Thursday, November 28, 2013

Thyroglossal Cyst and Sistrunk Procedure - Post-Op DAY 1 and DAY 2

WARNING:  This is a very long post with lots of little details . . . it is intended for other Sistrunk procedure patients to read, but if you want to know more of the nitty-gritty about my surgery, here it is . . . and if you dare or care to look at my post-op photos, click on the tab near the top of my blog title, called "Surgery Photos".  I'm tracking my incision site's progress for one year post-surgery.

I don't have a very informative surgeon.  Maybe that's a good thing.  Prior to my surgery, I didn't know what the type of cyst was that I had, nor did I know the exact term for the type of procedure I was about to undergo.  I know my surgeon did tell me the name of the cyst . . . a thyroglossal cyst . . . at my initial appointment with him, but I didn't get him to write it down and so I left his office without remembering the correct name of the cyst.  I just knew that it was a cyst that I had since birth, it was located in my neck, and it needed to be removed.

Perhaps it is a good thing that I didn't know all the terminology before heading to the hospital.  Knowing the terminology would have resulted in my investigation of the surgery on the Internet,prior to my surgery, and I might have backed-out of the procedure after finding out everything I now know.  However, in my post-surgery research on a thyroglossal cyst and Sistrunk procedure, I have discovered that there aren't too many personal accounts of this surgery, and that is why I am going to document my personal experience here on my blog.  So, if you are one of those people who is trying to find out more about the surgery and the follow-up, you've come to the right place.  Of course, this is just my own personal experience, and obviously, results will vary.

I first discovered a hard lump in my throat at the end of January 2013.  This lump literally appeared overnight.  It didn't cause me any discomfort or pain, just some concern about what it was.  Because it was going to take over a month to see my regular doctor about this lump, I opted to book an appointment with another doctor in the same clinic that my regular doctor practices in.  Dr. R. ordered an ultrasound to investigate the lump further, which I had about 2 days later.  The ultrasound tech advised me immediately that it was a fluid-filled benign cyst, not attached to anything major, and that it would drain and fill periodically.  She said it would be up to my doctor about whether or not it would be removed or just drained . . . or possibly left alone.

Dr. R. decided to leave it be.  That was back at the beginning of February, and I didn't think much about it after that, although I did take notice of its size--whether it was shrinking or growing, over the next several months.  In August of 2013, I had my yearly check-up with my regular doctor, Dr. L.  She knew that I had been to see Dr. R. several months earlier, so we discussed my reason for that appointment and she immediately advised that I see a specialist about the lump.  She thought it would be best to have a second opinion.

Moving ahead to October 11, 2013, I was seen by the surgeon, Dr. G.  He immediately made a diagnosis and likely it is then that he told me the actual name for the cyst, and said that a minor day surgery would take care of the problem.  It was ultimately my choice to have the surgery done, but he strongly recommended it.  He also advised that these cysts have less than a 1% chance of being malignant, so that was good to hear.  He also told me that this is something I was born with, and in half of the cases he's seen, they appear in children.  The other half are in adults in their 20's.  Apparently a 41-year-old with this condition isn't as common.  Or maybe it's that it took 40 years to make itself known which makes it an oddity.  In any case, I agreed to the surgery and was told it would be at least 3 months before the surgery would take place, taking me to January 2014 as the earliest possible time frame for the removal of my cyst.

I was surprised to get a phone call on November 21st to advise that a cancellation in the surgery schedule had opened up an opportunity for me to have the procedure on November 26th.  After some quick consultation with my boss and family, I took the appointment and five days later I found myself at the hospital in the Day-Surgery Ward.  I am very grateful for an employer who is adaptable to change and made this work for me.  Initially I planned to return to work 2 days after (which would be today), even though the surgeon's booking personnel advised me to take the rest of the week off from work.  I thought to myself . . . "How bad could this be?  They're just making a small incision to remove this little cyst, sewing me back up and sending me on my way . . . I should be fine in two days."  Well, I should have listened to the lady who booked my appointment.  I am needing the extra time to recover, and wont' be returning to work until Monday the 2nd of December.  'Day surgery' can be a misleading term.  I've come to the realization that what is now considered a 'day surgery' was likely a 2 or 3 day stay in the hospital, 20 - 30 years ago.

So this now brings me to the day of the surgery and the actual surgery.  I had to be at the hospital by 7:00 a.m., but I arrived at 6:30 a.m.  I had been up since 5:00 a.m., which is the last possible moment I was allowed to drink any water.  I had been fasting since midnight.  My husband dropped me off at the admitting desk and he went to work for the day.  I was given my wrist band and signed some papers.  It was now about 7:15 a.m. and I was sent to Day Surgery to wait again, for about 30 minutes.  Around 7:45 a.m. I was taken to my "room" for the day, which was actually a huge room with one wall dividing it into two parts.  Each part had space for about 10 day-surgery patients, with only a curtain to separate me from the other patients.  So, for the morning, there were approximately 20 people waiting for some sort of minor surgery.

Since I had short-notice for my surgery, I was unable to have a pre-op examination by my family doctor prior to the surgery.  That meant a nurse did the pre-op, which was actually a good time-killer, because I found out that I wasn't scheduled for the actual surgery until 10 a.m.  I spent the next 2 hours chatting with the patient beside me, answering the nurse's questions, having my blood pressure, temperature, etc. taken, and basically just waiting.  I was also given some information about my surgery, at which time I found out the correct terminology for my cyst and procedure, was told about the possibility of a drain to deal with after surgery, and was advised of how the rest of my day would unfold.  My two-hour surgery was to begin at 10:00 a.m. and I would be in the recovery room from noon until 1:00 p.m.  At 1:00 p.m I would return to my Day Surgery bed for an hour, get some food, change into my regular clothes, and go home around 2:00 p.m.

Due to a fire alarm in the hospital around 9:20 a.m., everything was delayed and I didn't get taken to the surgical waiting area until 10:30 a.m.  Then I waited there for about 20 minutes, while the gurney, doctor, resident, anaesthesiologist and nurse came to ask me questions and get me to sign more forms.  Throughout the course of the day, I was asked about 6 or 7 times about whether or not I had any metal in my mouth, metal in my body, loose teeth, etc.  Other questions were asked as well, but for some reason I just remember that they were really concerned about metal being in my body.

I was wheeled to the operating room, and the nurse asked me if I was able to walk into the operating room myself, or if I needed to be lifted.  I assured him that I could walk.  I entered a very bright, white, sterile-looking room and laid down on the operating table.  After several failed attempts by a paramedic student to start an I.V. on me in the normal top-of-the-hand location, the anaesthesiologist took over and had to go in through an area on my wrist bone.  An oxygen mask was placed over me, I went to sleep, they put a tube down my throat, cut me open, performed the surgery, and the next thing I knew, I was struggling to wake up in the recovery room.

Apparently I was having breathing difficulties when I arrived there, and as I was trying to wake up and focus, the nurse kept telling me to take long deep breaths into the mask.  Eventually I woke-up more fully and my breathing returned to normal.  At 12:10 p.m. I was given 2 regular-strength Tylenol as well as 2 mg. of Dilaudid (another name for it is Hydromorphone) to help with the pain.  Taking medication in pill form immediately following a surgery that affects your throat is somewhat challenging.  My oral cavity and throat must have been swollen, because I could hardly get those pills down.  They felt like they were about 10 times their normal size, and that was probably the most uncomfortable part of my day.  At around 1:15 p.m. I returned to my day-surgery bed and had some water, orange juice and ice cream.  It felt good to drink, because I was SO dry.  The pain at this point was totally bearable, and all it really felt like was a sore throat.

I continued to rest for a bit and then the nurse came to review my continued care plan, which included the removal of my dressing at home the next day or the following day.  I was advised to avoid constipation, although I was told I could eat a regular diet, and to resume regular activity as I felt able.  Signs of infection and fever were to be reported to a doctor immediately, and Tylenol and the narcotic painkiller prescribed (listed above) were to be taken for pain as needed.  My sutures are to be removed in seven days following the surgery by my family doctor, and I was advised to book an appointment with the actual surgeon approximately 6 weeks post-surgery, or sooner, if needed.

That's all the information they provided me with, aside from advising not to drive for 24 hours, not to sign any legal documents for 24 hours, and to not care for children for 24 hours.  At approximately 2:30 p.m., I left the hospital under the care of my parents.  They took me to get my prescription filled, and while that was  happening, I began to feel very dizzy, light-headed and nauseous.  My mouth was also extremely dry . . . the driest my mouth has ever been in my life.  Painfully dry is the only way to describe it.  Thankfully, I was sitting and waiting while the prescription was being filled, so I had enough time to regain my composure and walk to the vehicle for my 45-minute trip home.  The ride home was bearable aside from the fact that my mouth was so incredibly dry, I could hardly stand it.  Apparently this is one side-effect from the painkillers.  I chewed some gum to help relieve the dryness, but that was only a temporary remedy.  I guzzled a lot of water when I got home, and that made me feel so much better.

My appetite did not return at all for the rest of the afternoon/evening, and it wasn't until 11:00 p.m. that night that I really even desired to eat.  Chewing was difficult, as it was tricky to open my mouth.  My neck/chin area was very swollen, and with the bandages on my neck, eating was a bit of a challenge.

After reading a bit more about the side-effects of the drugs the doctor prescribed for pain, I decided that my feelings of fatigue, dry mouth, dizziness, and general wooziness were not worth the pain reduction the pills were giving me, so I chose to only use extra-strength Tylenol and that seemed to work just fine.

My first night of sleep was spent on my couch, with my head propped up, lying straight on my back.  This was an easier position to be in, rather than my normal on-the-side sleep position, which is how I sleep in my bed.  I took Tylenol before I went to bed, and didn't  wake up until 6:00 a.m. the next morning.  The pain was manageable when I awoke, but I took 2 extra-strength Tylenol to remove all pain whatsoever.  It did the trick just fine.

Eating continued to be somewhat challenging 24 hours after the surgery, but thankfully, my appetite returned by noon Wednesday, which would have been about 24 hours after the dose of Dilaudid that I had been given in the hospital.  I actually attribute most of my feeling horrible the following day to the side-effects of the pain meds.

From about mid-morning until I went to bed Wednesday night, I was in quite a bit of discomfort and pain.  Since I had been resting after returning home, I was frustrated by what seemed like a lack-of-recovery.  I know I needed to rest, but that's hard to do when you're a person who is normally very active.  I've had some minions helping me out since returning home from the hospital, namely my husband (when he's not at work) and my two teenage sons.  They do their school from home on-line, so it's been fantastic to have so much assistance readily available to me.

So, if I call Day 1 of the surgery from Tuesday noon to Wednesday noon, then Day 2 is from Wednesday, November 27 noon to Thursday November 28 noon.  The latter part of Day 1 (Wednesday morning) and the beginning of Day 2 (Wednesday afternoon) were the worst for me so far.  There was quite a bit of pain and general discomfort during that time.  My second night of sleep was almost non-existent, even though I remained in my upright position on the couch.  My best sleep came between the hours of 6:00 a.m. and 10:30 a.m. Thursday morning.  I continue to take regular doses of extra-strength Tylenol to help with pain relief, although I am now down to 1 pill instead of 2.

My initial dressing is now off and I was able to see the incision.  It looks pretty ugly, but I don't have as much bruising as I thought I would.  My chin and neck are very swollen and were initially numb.  The numbness has been reduced slightly, and the swelling has gone down somewhat, about 5 hours after removing the dressing.  In place of the dressing that the hospital put on me, I am now sporting a lovely over-sized band aid, about 6 inches long, which seems to barely cover the incision site.  This over-sized band-aid is much more comfortable than the dressing bandage that I came home with from the hospital, and perhaps the next time I change this band aid, I'll get my son to take a picture of my incision and I'll post a picture so you can all see it.

I was planning to return to work on Thursday the 28th.  However, after the way I was feeling Wednesday afternoon, I opted to make the decision to not return until Monday, December 2nd.  I think in the long run, this is going to be better for my body.  It will provide more opportunity to rest and relax before returning to my classroom of students.  I feel okay to be up and around, but committing to a 7-hour day of work (including travel time) seems daunting right now.  My voice is quite weak and I'm not sure how long it is going to take for it to return to its normal volume.

One concern I have since having the surgery is a cough that was pretty-much gone the day of the surgery . . . it has now returned.  I can only imagine the impact/force my coughing is having on the incision-site, and I pray that no damage has been done as a result of my coughing.

Until next time . . . **Please note--there is more . . . follow these links to read more about the days following my Sistrunk procedure. In order to view these pages, search the dates or title of my post in the search engine on my sidebar . . . 

(I also have a page tab just below my blog title, called "Surgery Photos".  This will give you a photo synopsis of my scar from two days after surgery until 1 year post-surgery.)

Post-op Day 3 - November 29, 2013

Post-op Day 4 - November 30, 2013

Post-op Day 8 - December 4, 2013

6 Weeks Post-Op "Thin White Line" - January 9, 2014

2 Month Post-Op - January 26, 2014





139 comments:

Liz said...

Hi Thank you so much for your blog and all detail you put into your Sistrunk procedure. I was struck by our similar stories. My cyst also 'blew up' in January 2013, and I am also in my forties (late!) but from there are stories differ. I had to wait 7 (yes SEVEN) months before I got an ultrasound scan of my cyst (the wonderful NHS in the UK), by which time I had already diagnosed myself! That was in early September and my procedure is due to finally take place next Tuesday 28th January which is pretty much a year since it all started. During this year (unlike you) I have had loads of symptoms and pain from the flaming thing and I will be very glad to be rid of it!

So anyway thanks again for explaining what you went through and although I'm not looking forward to all the pain, I will be very glad when this is all over.

Kimmy said...

Liz, I'm so glad that you found the writing of my experience helpful. That was my goal when I wrote about it--that perhaps it would be informative for others who were experiencing a similar surgery. I've noticed there isn't a lot of "personal experience" stories about this surgery on the Internet, which is why I felt compelled to write about it. I hope and pray that your surgery will go well and that you recover quickly and easily from it.

Kimmy said...

Liz, if you're ever back here, I'd love to hear how you are doing after your surgery. I hope it all went well for you and that you are recovering successfully!

Anonymous said...

Thank you, for the "insider's" view!
I'm 42 and my cyst showed up after my second child was born. I never knew what it was, and thought it was wierd, but thought it was just swollen glands or something.
My cyst got "very angry" in Nov 2013 after I got a flu shot. It got super infected, red, swollen, hot, and really uncomfortable.
That's when it got diagnosed.
After antibitics, it calmed down, but now it's infected again. More antibiotics for me and a surgery in Mar 2014.
Thanks for outlining the recovery, it's just the kind of information I was looking for.
Karen (and my cyst)

Kimmy said...

Karen, I'm glad that I was able to be helpful--that's exactly why I wrote about my experience--so that others could benefit from it if they have to have the procedure done. I hope and pray that everything goes well with your surgery next month. If you get a chance, please comment again after it's done and let me know how you're doing.

Alison Brown said...

Hello! Thank you so very much for posting about this! I am 21, and am in need of this procedure, as well. I'm really scared, because I live alone and have no family in the area, and I really didn't know what to expect. Plus, I was too emotionally distraught to ask the questions I should have today.

Did your voice change after the procedure? How is everything now?

Kimmy said...

Alison, I'm glad you found my post helpful. My voice was initially very weak for about 1 1/2 weeks following surgery, but now three months later, my speaking voice is pretty-much back to normal. However, my endurance level for being able to talk or sing for extended periods of time have not reached the level they were at prior to my surgery. My doctor told me that it would take a year for my body to completely heal, internally and externally (i.e. the redness of the scar will not turn to white until about a year later). I just published a two-month post-op writing, which discusses my voice struggles. I'm sure each person is going to experience this in a different way, and I only share what it's been like for me. Perhaps since you're 20 years younger than I am, your recovery and side-effects won't be as drastic as mine were. I'm praying that your surgery is successful and that your anxiety will be non-existent as your surgery day approaches. Feel free to keep commenting here, as I check back now-and-then for updates from my readers.

kaitlyn leveck said...

Hey!! I've been looking all over for somebody's blog. I'm 18 and found out about my cyst about 8 months ago. I'm waiting to have surgery but I had so many questions but nobody to answer them. What about showering? Even though your voice isn't as strong as before does it sound different? And am I the only one that finds myself clearing my throat ALL the time? Lol thanks! :)

Kimmy said...

Kaitlyn: I actually haven't had a shower since my surgery, which was just over 6 months ago . . . ha, ha, I've been bathing instead. Initiallly it was just easier to bath because I was concerned about my incision site getting wet, especially with all the bandaging and during the time my stitches were in. I bathed instead because it was easier to keep the incision site dry. Now I have stuck with the bathtub because it is way more relaxing. Regarding my voice--I don't know if you have read my post from the end of January, but my voice is still "recovering". I used to sing on a worship team at my church, but I no longer have the endurance to sing for an extended period of time. My surgeon told me I'd need a year to heal completely and so I don't think I'll be singing or talking for long periods of time until next Christmas! However, I haven't noticed that the sound of my voice permanently changed when I speak--my voice just tires out more quickly. If you would like to ask me more questions and have a one-on-one conversation, feel free to e-mail me at wkarendt at yourlink dot ca and then I can answer more of your questions. I hope your surgery goes well. Thanks for commenting on here. :)

Elizabeth said...

Thanks for your detailed description of what you went through. My son is 4 and he is having his surgery done this month. As a parent of a little one who can't really describe what they are feeling, this information very helpful to know!

Anonymous said...

Hi I have just been discharged after having Sistrunk procedure yesterday morning. Codeine and paracetamol controlling the pain, but as the swelling and bruising coming out the pain is increasing. Hardest thing is getting comfortable to sleep.

Kimmy said...

Elizabeth: I hope and pray everything goes well for your son with the surgery and his recovery.

Kimmy said...

Anonymous: I know what you mean about getting comfortable to sleep. I think I mentioned this somewhere in one of my posts, but I actually didn't go back to my regular bed for several days, and opted to be partially-propped up with pillows on my couch, which I found to be more comfortable. I hope and pray your recovery goes well. Sounds like you have different pain meds than me, so maybe they'll be more effective than what I had.

Anonymous said...

Day 6 and still really struggling. The pain is getting worse at night, and my neck is still massively swollen. Getting very fed up now :-(

Kimmy said...

Anonymous: I certainly feel for you and I wish I could tell you that the swelling goes down immediately. Mine didn't. I wrote a post 8 days post-op and I remember lamenting over this huge "turkey wattle" I had to deal with. My solution was to cover my neck with a scarf, but it was winter here, and cold. I can imagine having this surgery in summer will make it more difficult to "conceal" the effects of the surgery. I believe it was at least 2 weeks post-op that I felt comfortable to reveal my neck--my incision still looked pretty horrible at that point, but the swelling in my neck was more reasonable. Now, 7.5 months post-op, I can say that the area around my "Adam's Apple" still looks a bit swollen to me, but I have reclaimed the definition along my jawline and things look so much better now. I hope you find some comfort in your pain meds and that the swelling will diminish soon for you.

Anonymous said...

Wish I would have found your blog earlier, would have helped with realistic expectations. I am 46 and @ 7 days post-op for TGC removal. I am so disappointed with the scar across my throat after going thru everything related to the surgery. It looks like an undulating mess. Hoping it somehow looks presentable over time. Does anyone have any images to show 1-2 months, 1 year out?

Kimmy said...

"Anonymous" who most recently posted . . . I have been thinking about posting my photos pertaining to the surgery. They are quite graphic, but it might be helpful for those undergoing the surgery to know that it won't always look as bad as it did at the beginning, which is what I think you are feeling. I am almost 8-months post-operation now, and I am pleased with the progress my scar is making. I take a picture of my incision each month on the 26th of the month, since I had my surgery on the 26th of November. I want to check the progress as the year goes on. I've searched the Internet for post-surgery photos, but they are few and far between, if any at all. Actually, there isn't much personal experience regarding the procedure at all, which is why I wrote about it on my blog. I'll try to get the pictures posted within the next week, so please keep checking here.

Anonymous said...

Thanks so much for your reply. I am now on Day 13 and I have made tremendous progress with healing. What a difference a week makes to the appearance of the incision scar. I finally took my first picture of the incision site and the ruffling effect has subsided as the swelling has gone down. There is still quite a bit of redness around the scar, but I can now see that with time, this may actually look acceptable. I do not consider myself a vain person, but it is hard as this is the first thing I see. Good idea to take a picture at regular intervals to check progress. Thanks again...SB from Florida.

Kimmy said...

SB in Florida: I'm glad that you are able to see progress. I know that the initial look of everything was quite scary for me and with time, I've gotten used to having this scar. My doctor assured me that one year post-op it will just be a thin white line, so I hope that is the case for all of us. Take care! Thanks for the update.

Anonymous said...

Than you for this blog. It has been the only place i could get realistic expectations for recovery.
Im on day 8 postop. Pain is very tolerable now. Similar to a semi severe sore throat, causing slight difficulty swallowing. I have terrible feeling of acid reflux. I plan on doing not strenous excersize soon.

swelling has started to subside about 30-40%

thanks for your writing. Was feeling lost till now.


Watch "Sistrunks Procedure for Thyroglossal Duct Cyst. J…" on YouTube
Sistrunks Procedure for Thyroglossal Duct Cyst. J…: http://youtu.be/0oxhRpSq850

Anonymous said...

Also, something i noticed post op... days and years prior to surgery, i suffered from chronic fatigue, symptoms of poor circulation, chronic allergies, chronic sinusitis, and chronic upper respiratory infections.i woke up from surgery and immiediately noticed i could breathe better. On day 3, i noticed a surge in energy, nomore naps needed despite pain meds. Not a sign of allergies. And my body is showing signs of better circulation.
My cysts was approximately golf ball size.

I feel/believe the cyst was blocking my airway enough to cause me to suffer the above problems. Oxygen (or lack of) seems to be the common denominator for above ailments. Im glad to have the cyst gone despite the current discomfort and just as happy that i can improve my health condition on so many levels. I used to jog about 4 miles a few times a week and would finished very winded even after months of training. I now feel lime i can easily get up and go run about 6-7 miles. I will try at about 3 weeks!

Kimmy said...

Anonymous from November 11/14: Thank you for your comments. I am glad that you are overall in better health. Wow, I didn't know that a thyroglossal cyst could have such an effect on other parts of our system. I knew about the potential breathing difficulties, but not the other things you mentioned. I hope and pray your recovery continues to go well for you.

Anonymous said...

Greetings from Spain. Thanks for your blog. It helps a lot. I have this tyroglossal "thing" too, and am terrified. What scares me the most is the anesthesia, if i´ll be able to breath when I wake up, or if I´ll be able to piss it out.
Good luck, and many many thanks!!!!

Kimmy said...

Anonymous from Spain: Wow, I can't believe this information has reached your part of the world! I hope what you have read is beneficial for helping you know what to expect. I came out of my anesthesia just fine--it was a really quick surgery for me, and I pray yours goes well for me. If you get a chance, please come back and give me an update. Thanks!

Anonymous said...

I will tell you Kimmy. My name is Ginés, I just forgot to mention.
Thanks so much for your answer.

Anonymous said...

Thank you for this blog! I am 40 years old and am having this surgery tomorrow. I noticed a hitch in my throat when swallowing about 5 months ago...and here I am. I was worried about my voice, so I'm glad I found your blog. I have been clearing my throat for many years, and lately my voice has been weak. I'm hoping this surgery will relieve my vocal cords and lessen the throat clearing. It will be nice to get the giant marble out of my throat too. Thanks again, Melissa

Anonymous said...

I had my procedure last Wednesday, and it's struck me just how much if a difference the drain I had must have made. I wasn't allowed to leave the hospital until I was draining a maximum of 3ml over a 12 hour period, which for me meant a 3 night stay! Since then there's been next to no swelling, very little pain (I'm off painkillers completely now), and the only long-term side effects I've had are tiredness and the hole left by the drain itself - though that's now healed over quite well. Just thought it was interesting how much difference it seemed to make. X

Jesse said...

I am having the Sistrunk procedure this Thursday and I am really scared, I am hoping to be out the same day, however I have been reading about a lot of people that have been staying over night or longer. I wonder about the seriousness of mine because it is about the size of a baseball. It has been drained twice and surgery put off for a week due to the infection still being pretty bad. I was wondering if anyone had any insight about the size and seriousness of this procedure being this big of size. Really hoping that everything goes smoothly. Please keep me in your prayers.

Kimmy said...

Anonymous (Melissa) from January 28/15 - Sorry, I didn't see your comment sooner. I hope and pray your surgery went well, and that you are on a full road to recovery. :)

Kimmy said...

TO: Anonymous from February 12/15 . . . I'm glad the drain helped you. My doctor advised that a drain was not necessary for my procedure, but it sounds like for you, it's helping a lot. And that's great that you're already feeling so well after just a couple of weeks! Thanks for sharing your experience. :)

Kimmy said...

Jesse: Yes, I'll be praying for you for sure! I think the hospital stay is determined by how well the procedure went and/or whether or not a drain is necessary. I didn't have to have a drain, so I went home the same day. With yours being the size it is, it's hard to say what they'll do. I don't know if size has anything to do with it, but perhaps your surgeon can give you more insight when you arrive for the surgery. And in your case, since you've had it drained already and had infection, it might be a better thing if you have to stay in a bit longer. That way the medical professionals can monitor infection--it sounds like you're at a risk of that. Hopefully they send you home with some antibiotics in addition to the pain killers. Again, I'll be praying for you on Thursday as you go through this. :)

Anonymous said...

This is all such great information. Thank you! I am meeting with a surgeon next week to schedule this surgery. I am concerned about the recovery time and how much time out of work it will take. I have a week vacation coming up and I am thinking of scheduling this the week before. That would give me two weeks healing time before returning to work. I am a kindergarten teacher which requires a lot of talking! The only thing is I have airline tickets to Florida that second week. I am wondering if traveling so soon is too ambitious.

Kimmy said...

Dear Anonymous from February 17/15 - I think your plan for scheduling is probably perfect--especially when you have a demanding job like a Kindergarten teacher (I work in a school as well, and working with kids can be exhausting at times). I am not sure about the trip to Florida--I'd have to say that you could check with your surgeon, and it probably depends on whether or not you have to have a drain, and when you need to get your stitches out. Also, I wore scarves for several weeks following surgery, for two purposes--one was to hide the incision and swelling; the other reason was to protect my incision site from getting infection. I wore a bandage/band-aid over my incision for close to two weeks, but you may not have the need for scarves, depending how your body heals. I also know that for two weeks especially, following the surgery I was very tired. I only took one 6 days off work from the day of the surgery til I returned, and I wish I would have doubled that time, just so my body could rest more at home. Hope this helps you with your decision! :)

Unknown said...

I had my Sistrunk a week before I turned 60. I had this cyst for years and it was probably missed when I was a child. I seemed to heal well but wonder about surgical adhesions as the nature of my cough has changed since the surgery. This latest bout of flu/cold/virus gave me a bad cough which seems around the area of the surgery. It sounds like a freight train going through my neck. My lungs are clear. I think the Sistrunk removal of hyoid bone changed the vibration in my neck when I cough. Bizarre. My voice has never been the same either since the surgery. I have a constant rasp. I am now 6 months away from 62. Get this surgery when you are young. Do not wait even if docs say it is okay to wait. I was told to wait by too many doctors over a 30 year period. In other words, neglected. They say they never see it go cancerous but my endocrinologist has. Not an easy surgery to do but worth it. Now if this cough would just stop.....thanks for your blog. There is hardly any info on the internet for Sistrunk. I too thought it insane to swallow pills after throat surgery. Does anyone know about surgical adhesions with this surgery? I suppose I should call the ENT who did my surgery. Thanks.

Farah Razavi said...

Hello all, I am three days post op. I am not feeling too good at the moment. I wish I knew about this site sooner. I will write once i am able to. Keep up the good work.

Kimmy said...

Dear Anonymous from March 11: Thanks for posting about your experience. I am not sure about adhesions . . . maybe there are others who could give you info on that--or like you say, contact your ENT about it. My voice has changed as well, but it's more of an endurance thing as opposed to how it sounds when I talk. When I sing, that's a different story--I do not sound the same anymore, and I definitely cannot sing for as long.

Kimmy said...

Farah: Thank you for posting your comment. I hope you are beginning to feel better. My only recommendation is to rest and do as little as possible for as long as you can. I wish that I had spent my second week resting, but instead, I returned to work. Please give an update if you are able at some point. I'll be praying for you!

Ryan Renee said...

Thank you for posting such detail on your surgery. I have mine scheduled next week. I'm very nervous because my son is only 14 months old and this will be the first time going under. I know I'll be fine, but still... I am a teacher and I'm hoping 2 weeks off will be enough. I am nervous about my voice: projection and quantity in class, and then quality with my son.

Kimmy said...

Ryan Rene: Thanks for your comment. I hope and pray all goes well for you. I think the 2 week recovery time will be good, and hopefully you'll be good to return to the classroom. :) God Bless You!

Anonymous said...

Thank you so much for posting about this. I was recently 'diagnosed' with a thyroglossal cyst and I'm terrified because this will be my very first surgery. I'm a 23 year old law student with a super exciting internship this summer so I have no idea when will be a good time to schedule the surgery seeing as how the recovery time seems appears to be more than just a three day weekend haha. Maybe when school starts back up...is this the type of thing that needs to addressed ASAP? I would rather wait a few months but don't want to risk any potential complications.

Kimmy said...

Anonymous from April 8/15: I'm so sorry it's taken me so long to respond to your comment. I actually just noticed it here today. Usually I get an e-mail to advise of comments posted, but for some reason I missed yours. I am not a doctor, so I'm not sure about the level of urgency for you. Mine was minor, and not an urgent matter. And I also had the option to just continue on and not have the procedure done, but taking a risk that it could become larger and create more problems in the future. I opted to have it removed due to the level of discomfort I was feeling in my throat as a result of it, as well as the slight risk of cancer. Apparently having a malignant type of cyst is fairly uncommon, but you just don't know if you're going to be the "One percent" who has cancer from this cyst. It sounds like you are very busy with life, so I would suggest having it done whenever you know you will have at least one week (preferably 2) to recuperate properly. I wish you all the best. God bless you!

DK said...

Hi Kimmy,

Thanks for such a nice blog and great information. I had my Sistrunk procedure last Monday. I am still feeling discomfort while swallowing. Can you please share your experience about how many days it took for you to back to normal in eating or drinking?
Thanks again.

Regards,
DK

Kimmy said...

DK: Thanks for your comments. If I can remember that far back . . . I think I was drinking quite normally by the end of the first day (I found the cool or warm liquid, depending on what I was drinking, to be soothing). It probably took me 4 - 5 days before I really even had my appetite back, and even then, I wasn't eating anything too rough. Hope that helps--and I hope and pray your recovery goes smoothly.

DK said...

Hi Kimmy,

Thanks a lot for your update. It's third week and I am feeling better. The only problem I have is surgical bandage on my neck. The beard is grown and it's getting painful while removing the bandage. Rest looks good, but after doctor appointment only I will know how's the healing process going on.

But I would like to big thank you for such a nice posts about surgery and other posts. You are doing a great job, not only for you for rest of us who either gone through surgical process and planning. It's not an easy job to write down all the things and replying to queries for people like me.
I think I am out of words, but in nutshell you are awesome in what you are doing.
I wish you a happy journey of life. take care.

Regards,
DK

Kimmy said...

Hi, DK. Thanks for the update. I am glad you are doing well so far. As far as a surgical bandage--I didn't wear any bandaging after the first 10 days or so, and I didn't have to contend with a beard :) Thank you for your kind words about what I've written. It really makes me feel like the time I took to document my journey for the sake of others, was beneficial. I hope you fully recover!

Anonymous said...

Hi so glad I found your blog I'm nervous about having the procedure done. Having it in 2 weeks ND this cyst is so painful. I'm on antibiotics to help with the infections. I was misdiagnosed by 1 dr before actually finding out. Thank you for writing about this

Kimmy said...

Dear Anonymous: That's horrible that you were initially misdiagnosed. My cyst was initially diagnosed by another doctor who was filling in for my regular doctor while she was on a leave of absence, and the initial doctor wasn't concerned about it AT ALL. When I went to see my doctor about 8 months later for my annual check-up, she immediately sent me to a surgeon to have it removed. I will be praying that your surgery goes well and that your recovery is successful also. Thanks for posting your comment. :)

BRANTONPHOTOS said...

Thanks for this post. I'm 34. My TGC is high up and really affects my voice. I've been ignored by my doctors for 7 years. I was really concerned I might lose my voice altogether. I'm not sure when my surgery is yet but it's so good to hear this story it's a little scary and hearing your story eases my tension :) Thank you

Kimmy said...

Dear BRANTONPHOTOS: Wow, 7 years is a long time to wait. My initial diagnosis was not done by my regular doctor, as she was away on holidays when I first went to inquire about the "lump in my throat". The original diagnostic doctor said it didn't need to be treated and it could just stay in my body. Thankfully, when I went to see my regular doctor for my yearly physical about 8 months later, she immediately referred me to a surgeon because she didn't feel comfortable with what was going on. I hope and pray your surgery is scheduled soon and that you have a full recovery. Thanks for sharing your story.

Anonymous said...

7 years is a long time. I waited 30 years from the initial diagnosis because no ENT would do the surgery. It definitely changed my singing voice having the surgery. It is comforting to know that this will not pop up again. My former endocrinologist said that someone came in with a cancerous thyroglossal cyst. They keep saying it is uncommon but in my case how would they have known since the doctors seemed too lazy to take it out.

Kimmy said...

Dear Anonymous from June 12, 2015: Wow 30 years IS a long time. I'm glad they finally took it out for you. I have heard of these cysts being cancerous, which is one of the main reasons I wanted mine to be removed. I would rather have a scar on my throat than to risk having a cyst turn into cancer at some point in the future. Thanks for sharing your experience.

Anonymous said...

Thank you very much for this blog. I've got my Surgery on Monday and though I am not too scared of the surgery itself I am terrified about being "put under". It's good to get the layout of how things might feel after. I've been very lucky as my Cyst was diagnosed and being treated within three months. I am looking forward to getting it out and hopefully having a normal looking neck one day. I really appreciate your input. Many thanks.

Kimmy said...

Anonymous from June 20/15: Thanks for sharing your comment. I'm glad that you are able to have your surgery so quickly after being diagnosed. I'll be praying that your surgery goes well for you on Monday.

Sherado said...

I am scheduled to have this surgery this week. I am 32 years old and I have had this cyst since I was a child. It never bothered me, but for some reason now it appears to look bigger at times and others around me are noticing it as well. So to cut along story short the doctor wants to take it out. I am nervous and a bit afraid. Your. Blog has helped me tremendously. I pray all will go well with the surgery. Keep me in your prayers .

Sherado Gibson
Nassau, Bahamas

Kimmy said...

Sherado: Thank you for sharing your story. I am glad that my blog was a help to you. I will pray for you this week as you go through this experience and surgery. Take care.

Anonymous said...

Hi Sherado and all, oddly enough my last name is Gibson as well and as per my recent comment I had my surgery on Monday. It went ok. The Surgeon didn't tell me a lot just that my surgery went on two hours longer than it should have done and I had a drain inserted. I was still able to go home after about twelve hours in the hospital though and am on my second day home. I am swollen and to be honest the biggest problem that I am having is that I can't wash my hair! LOL. Stiff but not that sore. Swollen but have no problems swallowing. I think the recovery is going well. Kimmy, Thank you for your prayers. I felt much better going into surgery knowing what to expect.

Kimmy said...

Thanks for the update, Sherado . . . I will continue to pray for your complete recovery. I know what you mean about the hair-washing. My hair wasn't that long when I had the procedure done, but if you have long hair I cannot imagine what that must be like to wash.

Anonymous said...

Hi, I just went to the ENT Dr. today and was told that I need to have this surgery. I'm so glad that I decided to research exactly what this entails. I'm so thankful for your blog and your post-op pictures. I think it has helped me to understand exactly what this is going to be like. My Dr. told me to plan on staying overnight in the hospital, that I will have a drain put in and that I will have a 1 - 1.5 inch incision line. He also told me to expect to have the worst sore throat of my life. None of that prepared me for what I just read and saw on your blog. I'm thankful for your real life testimony of your experiences. I have been dealing with this "lump" in my throat for at least the past 5 years. They have always put my on antibiotics and steroids and told me I had an inflamed lymph node. Not until this past July did they even suggest having a CT scan to find out just what was going on. That is when I found out that I have this "thing" in my neck that needs to be removed. I am going to schedule my surgery for October. I also work in an elementary school and we go back to school next week. I feel I need to be there for the start of the school year and to get things going before taking some time off. After reading everyone's posts, I feel like I want at least 2 weeks off before going back to school. Thank you once again for your honest portrayal of what this surgery is all about.

Monica J said...

Hi Kimmy,

Thank you for this post. The comments are informative, also. I had my surgery on August 3rd, 2015, at the age of 53. I wish I had read your post prior to the surgery! Like you, I assumed that since it was "outpatient" surgery, I would be up and about in a day or 2. At my10-day followup visit, the surgeon said all was well and that I could return to all normal activites. Ha!! I've found myself so worn out after a 6-8hr day, that I crash around 7 or 8pm. Pre-surgery, my normal bed time was between 12 and 1am. Have you experienced any exhaustion? If so, how long was it before you felt "normal," assuming you feel normal. :-) Thanks for your openness and willingness to share. God bless you!

Kimmy said...

Dear Anonymous from August 20/15: I am so glad that my blog has helped you prepare for the surgery. I am sure it will go well and taking 2 weeks off (especially from the type of work you do . . . I work as an Educational Assistant in a school, so I know how exhausting working in that setting can be) is a good idea. I'll be praying that your procedure is successful.

Kimmy said...

Monica: Thanks for leaving your comments. I hope you continue to heal properly from the procedure. Regarding my level of exhaustion . . . yes, I did experience less energy and a bit of "body drag" for about a month or two after, but my surgery also took place one month before Christmas, so the busyness of Christmas season may have also affected my ability to feel my regular level of energy again. I'm glad that my posts and other comments have helped you.

greg botos said...

I just had my Sistrunk procedure a week ago - 8/17/2015. I am 60 years young. All went well. I was in the hospital for 23 hours. Pain was moderate post-surgery - 6/10. Dermaplast was used to seal up my neck instead of sutures and bandages. I was pleased at how easy this was to maintain.
Now 1 week later my post-op stamina is back to about 90%, however in the days immediately following surgery I got tired fast.
I still have swelling and a sore throat - 2/10 on the pain scale. I'm told the swelling will continue to decrease, as will the pain. No real change yet in the appearance of my neck - the Durabond is looking the same as Day 1.

Kimmy said...

Hi Greg. Thanks for posting. I am very curious about how your surgery site will look after the healing process has happened. I would imagine Dermaplast would leave a smaller scar behind than if sutures had been used to seal the wound. It's good to hear that your pain level has decreased since your surgery. Take care, and God bless you!

Anonymous said...

Hello. I am 34 yrs old and since February I have been misdiagnosed. I have been having sore throats with swelling every month since February like clock work. Everytime it happens I end up in the er. In july I had my adenoids removed because they thoughts what was causing all my sore throats. 2 days after the surgery I ended up back in the er with a sore throat and swelling. The dr gave me a Ct scan and noticed the cyst. He sent me to another dr who said I had to wait until it flared up again so I could get an mri done. A wk later it did and as of today she confirmed it. I am glad to finally know what is really wrong. I was tired of getting sore throats and ending up in the hospital because I couldn't breathe. I go back nxt Wednesday to talk about my options. Thank you so much for your blog. It has answered many questions I could not find online. Not much info on this with adults.

Kimmy said...

Dear Anonymous from September 4, 2015: I am so glad that this blog was helpful for you, and I hope your doctor is able to get your surgery done soon so that you no longer suffer the side-effects of having this type of cyst. Keep me posted on how everything turns out if you can. :)

Anonymous said...

Update....I went to see the ent dr and found put that the thyroglossal duct cyst is way up in there and back. Also found out that I have another cyst begind that one. So the dr gave my case to another dr since she has never experienced something like this. Now I'm waiting for the new dr to call me and go from there. I have to admit I am scared that this will be a risky surgery. I hope and pray all will go well. Thank you.
Stella

Kimmy said...

Stella: Thanks for the update. I had more than one cyst too--the "extras" were lodged in the hyoid bone, which was also removed during my surgery. I have read that without the removal of this bone, the risk of a recurrence of thyroglossal cysts in the future is greatly increased. I would check with your doc to find out if they plan to remove the hyoid bone during your procedure. I don't think my surgery was any more complicated with these extra cysts than if they hadn't been there, so I hope that makes you feel better. If you have future updates, please let me know. I'll be praying!

Anonymous said...

Hello again. Thank you for your response. That does help to know that I'm not the only one that had multiple cysts. I haven't heard from the dr yet so it's a waiting game. Right now the swelling is not wanting to go down which not normal for me. It usually goes away after 3 to 5 days. Not this time. I'm worried something is wrong. Should I be concerned? Sorry for all the questions but this time I'm alot more nervous since its not going away.
Thank you,
Stella

Kimmy said...

Hi, Stella. I'm no doctor, so I wouldn't take everything I say as the absolute truth. I can only speak from my own experience. I would say that if something doesn't seem "normal" to you, perhaps you should make an appointment with your doctor again. I hope it is able to be rectified sooner rather than later. The waiting is always the worst part with anything medical, I find. I'll be praying! Please keep me posted. Thanks. :)

Billie said...

I just had this procedure done on 9/21. Everything went well & I didn't have much pain afterwards, especially after the drain was removed the next day. But it's 6 days post-op & I have so much swelling that it looks like they didn't remove it at all! The swelling didn't start until two days later, the day after I had my drain removed. It's a bit awkward to swallow & the back of my tongue is a but tender but that's about it. No change in my voice. No pain after the drain was removed. My concern is how long it's gonna take the swelling to go down! :o/

Kimmy said...

Hi, Billie. I'm glad to hear that for the most part, your post-surgery experience has gone well. Regarding the swelling, if you've had a chance to look at my photos on tabs at the top of my page entitled "Surgery Photos" you will be able to see what my swelling looked like. I'm assuming most people look like this following this procedure. I was shocked about the swelling. My doctor did not prepare me for how my entire throat/chin/neck area would swell up like a grapefruit, and even worse initially. I think I remained swollen for at least two weeks, and the large "ball" that seemed to grow around the incision site lasted for about 10 days, if memory serves me correctly. I know I was very self-conscious about the swelling--more than I was about the incision or scar. I was fortunate that I had my surgery in the winter in a cold part of the country, so I could get away with wearing scarves all day long and no one really knew why. I was doing it to hide the swelling. I hope this helps answer some of your questions about the swelling. I'll be praying that you fully recover. Thanks for visiting my blog.

Robert Hughes said...

Thxs very much for sharing your experience of this .i myself have just gone through the same cyst removal and found your account to be genuine and indeed very helpful for others going through this this again rob

Kimmy said...

Robert: You're welcome. I hope and pray your recovery is successful. :)

MihaelaMaria said...

Hello Kimmy, I had the Sistrunk procedure two weeks ago, I am also in my 40's, just wanted to ask if you had this sore throat for so many days after the surgery. Actually, beside pain with deglutition, I am feeling quite good and energetic.

Kimmy said...

Hi MihaelaMaria: Glad to hear you are feeling so well. My throat did hurt, but I think it was only a few days. At the time I wasn't really sure if it was a "sore throat" internally, or just pain in the area due to the incision. I hope your sore throat goes away soon!

Anonymous said...

I finally had my surgery on the 12th of this month. They were able to remove the 1 cyst but the other one was attached to my tongue and they didn't want to risk removing it. I stayed in the hospital for 3 days until they removes the drain. I ended up getting some stomach issues after I went home that last 5 days. The swelling is finally going down now. I was lucky and my voice did not change and the sore throat lasted a couple days. Now I just have to hope and pray the other cyst does not cause me any problems. Thank so much for your kind words and getting me through the nervousness I was having. Stella

Kimmy said...

Hi, Stella! Thanks for posting and giving me an update. I too hope and pray that the other cyst doesn't create problems for you in the future. I'm glad you found a place here to help you get through your nerves. God Bless You!

Anonymous said...

Greetings from Nigeria, West Africa. Thanks for all these informative posts. I am 43 and had my Sistrunk Procedure in the night of 31st October, 2015, after leaving with it for 3 years. I passed 2 nights in the hospital. The first few hours after the surgery was hell. Unbearable pains, sore throat of the highest order and excessive fatigue. 36 hours after the surgery, I was discharged from the hospital. Bandage was dropped and the drain pipe removed. Pains also reduced greatly and could swallow with little difficulty. No swelling of neck, my voice was not affected in any way. Also, the site and size of the incision were not too bad but there is this ridge around it{skin elevation}. My surgeon told me that this would thaw away in not too long time.
Up till this day, everything is OK except this feeling of exhaustion, which I do not know when it will go.

Kimmy said...

Dear Anonymous from Nigeria, West Africa! Wow, this blog is reaching far and wide. I'm so glad you took the time to share of your experience. It's interesting to hear how everyone has a different outcome, especially regarding your incision. Hoping and praying your exhaustion is replaced by energy very soon! God Bless!

Unknown said...

My 11 month old daughter has to have this surgery. We go on the 8th for the cat scan and to set up the surgery.I am terrified. This blog eases my mind a little. I am worried for her were she is so small. She will have no idea why she is in pain and what is going on . I hope that it goes as well for her as it did for you.

Kimmy said...

Dear "Unknown" from February 26, 2016: Oh my, I definitely feel for you. I will be praying for your baby daughter and for you as you face this surgery. Thank you for sharing your story on here.

Mark Toronto said...

Hi , thanks for sharing - I got diagnosed with TGDC, just wondering if anyone can comment on long term effects...i.e... After the 6 months of healing is up - do you feel 100% normal again.
Thanks so much ,
Mark, toronto CA

Mark Toronto said...

Thanks for this blog so much- I recently got diagnosed with TGDC- can anyone help with following?
1) after sistrink procedure do you feel 100% again (I.e. After 6 months, 1 year etc.?
2) has anyone had successful alternative treatment that did not involve surgery, if so details?
Thanks again so so much - I feel alone on this and would send out as much good karma as I could should anyone reply.
Thank you,

Kimmy said...

Hi Mark Toronto: I had my surgery just over 2 years ago and I honestly feel 100% now, with the exception that I was once a singer and now do not have the stamina to sing for extended periods of time. That has gotten better as the years go by, but I don't think I'll ever get my original singing voice back. The other obvious post-surgery change is the scar that I have on my neck. I don't really think about it too much anymore, or even really notice it; but sometimes I notice complete strangers (in a grocery line, etc.) staring at my neck and I remember that there's a scar there. It's healed up as well as one can expect, although my surgeon told me that one year later it would just be a "thin, white line". That is not the case, but I've come to terms with having this scar on my neck. I'm not sure if you were able to link to any of my "Surgery Photos" (check the menu bar at the top of my blog, right under my blog name and click "Surgery Photos"). I find that seeing these photos are a good way to prepare for what your incision site may look like after the procedure. I was very surprised at how swollen the affected area became, but there is definitely a light at the end of that tunnel! Regarding alternatives, the only thing my doctor gave me as an alternative was to just live with the cysts. Mine would build-up with fluid and then drain internally, then enlarge again and build-up with fluid. This was a continual process prior to surgery. I know another alternative is to have it drained by a medical professional on a regular basis, but if your doctor is suggesting surgery, that's probably what is going to work best for you. I wish you well in the process. Thanks for posting here. Feel free to follow-up with comments after you have your procedure (if you go ahead with it).

Anonymous said...

Hi! Thank you for your blog, it has given me so much information in regards to this procedure. My son is 6 years old and is having this done in about 2 weeks. I am extremely worried! Do you know if this is a bit easier on kids than adults as far as recovery goes? He has had 2 infections in the cyst since December. Just as any mom, I don't want to see my little one in pain.

Thanks again :)

Kimmy said...

Dear Anonymous from March 9, 2016: I am not a medical professional, so I'm not sure if and how it would affect kids differently. For me, I chose to avoid the narcotic painkiller because I knew that it was making me feel worse. For you son, he may not recognize pain the same way an adult would. In my case, the extra-strength Tylenol combined with Ibuprofen was enough to take the edge off my pain and make it tolerable. For a 6-year old that dynamic might be different, but it's hard to say what they prescribe for children for pain after this surgery. The most difficult part for me was the amount of swelling I experienced at the incision site, as well as the area surrounding the incision (i.e. my neck/throat/chin area). I'm not sure if you've had a chance to look at my surgery photos, but they will help prepare you for the appearance that you can expect to emerge after this. I was not ready for that, and at the time didn't think I would ever look "normal" again. But alas, I am back to "normal". One benefit of having this surgery young is that he likely won't scar as badly as I have as an adult. Thanks for posting. Hopefully this has given you some insight into what to expect. I'll be praying that all goes well for your son, and that you are able to endure the process as well. As a mom myself, I completely understand where you're coming from.

Anonymous said...

Thank you for your response. I will prepare myself for this and take a look at your photos. Thank you for your prayers. I do believe that children are much stronger than we give them credit for.

Again, I truly appreciate your response and this blog. It is the only personal experience on this problem that I have found.

Regards!

Anonymous said...

My son had this procedure done yesterday (on his fifth birthday ��). I don't know how other children typically recover from the surgery, but he hasn't stopped eating or drinking since he woke up! He even ate a cookie in recovery. He is a very active child and this did NOT slow him down. He was bouncing and playing at the hospital last night before bed. He was discharged this morning after his drain was taken out. I asked the doctor about pain management and she said he shouldn't be in any pain and that even Tylenol wasn't necessary. They did mention something about a nerve block on his neck before the surgery so maybe that's why he isn't on scheduled medication. I was searching today because he is very swollen, it looks like he has a double chin. Thank you for reassuring me that swelling is normal. His incision is more on the underside of his chin, I don't think people will notice it too much when it heals. He has dissolvable stitches with some steri-strips over top. We were told not to worry about getting it wet. Funny how medical advice varies depending which part of the country you are in. Thank you so much for sharing your experience, it helped ease my mind.

Kimmy said...

Anonymous from March 11, 2016: Thanks for posting your son's experience on here. Yes, it is interesting how different doctors approach this. I would've much rather had dissolvable stitches . . . maybe that's what they do for children. It's probably less painful. I'll be praying that your son heals well from this procedure. Thanks again for posting.

Carol S. said...

Hi Kim, I originally found your blog by typing in GOOGLE SEARCH, "recovery from Hyoid Cysts". I was so amazed to find a person so willing to share her experiences, along with pictures too! : ) I just wanted to thank you and tell you your posts really encouraged me. I had surgery 2 weeks ago so your post from several years ago are still reaching out... I also love your 2016 verse. Thank you for that especially today, as I had a teary spell because I am seeing my energy level just isn't coming back as fast as I want. I needed the reminder, "The Lord will fight for you; You need to only be still." Wow! May the Lord continue to bless you.
Carol S.

Kimmy said...

Carol S. Thank you so much for your kind and encouraging words. When I decided to write about my sistrunk procedure (hyoid cyst) experience, it was for people just like you . . . who needed information regarding the procedure based on personal experience. Of course no two experiences are the same, but hopefully what I share here gives some perspective and reassurance that we can all make it through this surgery. I am so glad you were encouraged by my verse as well. It was actually a good reminder for me to remind myself of that verse today as well. Life is never easy, but for me it's easier knowing that I've got God fighting my battles (both seen and unseen) for me. God Bless You too!

Unknown said...

Thank you your blob was very helpful thank you so much.

Kimmy said...

Dear Unknown from March 17, 2016: I'm glad my blog helped you. :)

Kblogger said...

My daughter just had this surgery 10 days ago! Her swelling has been an issue. Doctor says its normal. I was really worried about it until I read your blog and saw your pics today! Hopefully we will see improvements. I saw where one person said the swelling was so bad that it looked like they didn't remove it at all. It's more my mind than anything because I have checked her neck for the last three months and the swelling around the incision this morning was eerily similar to how it looked before surgery! I feel a lot better now! Thanks and God bless! I'm also thinking about sharing a blog about my daughters experience to help other parents that have little ones going through this. My daughter is only two but has handled this incredibly!

Kimmy said...

Dear Kblogger: Thank you for your comment and kind words. I am so glad that my photos helped you feel better about what's happening with your daughter. I remember thinking to myself at the time of my enormous swelling, "Will I ever look normal again?" Well, I must say that the swelling is now gone and aside from my scar, I look "normal". But my neck with a scar is my "new normal". Looking back on photos that were taken up to two months after my surgery, my neck was still more swollen than normal, but now over two years later there is no swelling at all. The fact that your daughter is so young will probably be beneficial in the healing process of the incision site as well. I think it's great that you are considering posting information about your experience as well, especially as it pertains to young children having this procedure done. I hope and pray she continues to heal successfully.

harley5933 said...

wow..same age as me when mine started up. 2013 an 41 years old.
i had nothing up until the summer of 2013, eventually it got so bad i went to doc, a couple months later an scan the mri, i then saw consultant in the nov of 2013 an op was booked
for march 2014.

i had my op, woke up fine, ate lots of food as i was starving lol. then i fell asleep, when i woke up i was ill, they still sent me home.
i stayed at my friends house that weekend as i was to ill to go home. the sunday came an i had to go home an by then i was very ill, she kept telling me i need to back to hospital but i wouldnt go. op was on the friday, by monday i was so ill my neighbour called NHS 24 who in turn called an ambulance an i was rushed in with a massive infection an spent week in HDU. Hooked up to monitors and slept solid for 2 days, my neck was huge and red, from top of my chest up to top of my chin.
Im fine now, just the same as any op there are risks, but still glad i got it done :)

Kimmy said...

Dear harley5933: Wow, what a story! I am so glad you were able to recover from that. It's amazing what an infection can do to one's body. Thanks for sharing your story on here.

LM said...

Hi Kimmy. I am having this surgery on Wednesday May 4th and I am terrified! Like everyone else I really can't find much online but your blog was helpful. I am afraid of the swelling but I think my Dr told me I would have a drain in that I can remove myself the next day at home which really freaks me out. Most of all I am afraid to be put under. If you have any advice for going into this surgery and what to expect waking up please let me know! Thanks :)

Kimmy said...

Dear LM: I did not have a drain to deal with, so I'm not sure what that will be like for you. However, I'm sure the nurses at the hospital will give you instruction on what to do. The swelling is quite scary at first, but if you are able to check out my surgery photos in the tabs at top of my blog, you will see that there is nothing to get too concerned about, because eventually everything turns back to normal, minus the scar that will result due to the incision. Having said that, I certainly feel for you and if it helps to know this, I will be praying that your surgery and recovery go well. I believe in the power of prayer. You had a question about going under for the surgery and waking up afterwards . . . if you haven't been under anesthetic before, I can understand your fears. I was given an IV and the anesthetic was delivered to my body that way. I had to count down from 100, and I don't think I even made it to 97 and I was sleeping. Sometimes a mask is used instead of an IV, so I'm not sure what the case will be for you. Waking up was okay . . . I was very groggy and they immediately gave me pain killers. I stayed in the recovery room for about an hour and then I returned to the day surgery ward. I left there about 2 hours after getting out of recovery. That part was hard, because I reacted badly to the painkillers they gave me. I am hyper-sensitive to pain medication, and as soon as I was in control of my options, I disregarded the opium-based painkillers and just stuck with ibuprophen and tylenol. However, it was good to have the option for something stronger. I just chose to not take it because I found that it made me feel worse in other ways than the pain I was having from the surgery. I'm not sure what else to tell you. You will likely be very thirsty when you first wake up but of course it's sort of uncomfortable to swallow right after. Having ice chips was a bit better for me than actually drinking.

LM said...

Thank you so much for your response! I really appreciate your prayers. I will let you know how the surgery goes.

Anonymous said...

LM, I had a drain bag. THey kept me overnight as the hospital was an hour away. You do have to empty it when it gets full. See if you can get an overnight stay as my drain bag was removed the next morning. This also enabled me to have leg compression stockings and this vibrating device on my legs. Make sure they give you those stockings. It helps ward off blood clots. If you walk around a lot after, the blood drains faster. No big deal but I did not want to go home with it either as we have 3 cats. If you need the pain meds, put half a pill in pudding and swallow it that way. Then do the next half. My throat was very sore. Going under? No big deal. Ask for a relaxer before they take you in. You will be out like a light in seconds. There will be an anesthesiologist right next to you monitoring you. I had a whiskey sherry voice for a few days but it was an okay surgery and I had worse ones. GOOD LUCK TOMORROW!!!!!
Veronica

Kimmy said...

Veronica (anonymous): Thanks for sharing your experience for LM.
LM: I'd love to hear how you are doing once you're feeling up to it.
Take care!

Veronica said...

Hi Kimmy, I posted a while back. I had mine in Sept. 2013 after living with it for too many years. I am 62 now so that was 2 1/2 years ago. My ENT did a great job. That dang cyst caused really bad vertical neck wrinkles which went away by 70 percent! I have a weird cough now when I get sick. It rumbles in my throat like a runaway train. Not sure if anyone else has experienced that. Almost like that hyoid bone removal changed the vibration of my cough. Other than that, glad I got rid of it. Thanks for doing this blog site because there is so little internet information from people who had this surgery. How are you doing? I am thinking that I had this as a kid in the 50s and they took out my tonsils instead! Best, Veronica

Veronica said...

PS I have severely compressed neck vertebrae so after my surgery, my upper spine hurt more than the incision! Probably from the hyperextension of my neck. They said they were careful. It LOL. Veronica

Kimmy said...

Hi, Veronica. Thanks for the information you provided. It's interesting how everyone's body reacts in a different way to this surgery. I am doing okay. I rarely remember that I have the scar, until I notice a complete stranger staring at my neck . . . :) Then I remember and am thankful that I am alive. :)

LM said...

Hi Kimmy and hi Veronica! Thank you both so much for your helpful information. I had my surgery yesterday and it went great. I took my drain out today a nurse friend of mine did it and it wasn't that bad. My voice isn't different or hoarse I am not sure if that will change at all. I've been icing my neck so it doesn't look to swollen as of yet. I do have some pain but I am keeping up with my pain meds so it is bearable. Funny thing is you don't realize that when you move to get up out of bed how many neck muscles you use. I hope every one is doing well. Thank you for the prayers :)

Kimmy said...

LM: I'm so glad to hear you are doing as well as you are. Thanks so much for the update!

Veronica said...

I am so glad to hear this LM! Keep up with those pain meds so you don't get any breakthrough pain. Yes! LOL. Getting out of bed is a hard thing. It is all behind you now. It took me 20 years to find a surgeon who strongly suggested the surgery. I am so glad I finally did it too. YAY for you! Thanks again Kimmy for providing THE only forum for us rarities. lol. Veronica

sQuish said...

Hi there. Thanks for your blog! I'm going to see the ENT in a few days, I've just started dealing with this whole thing. My ultrasound came back that I have a throglossal cyst, I've already been told that I need this surgery. I'm 35 and so scared. Did you use ice to help with the swelling? And I am very active and into fitness, I and lift weights, I'm assuming I'll have to adjust that for the healing and recovery, were you given any physical restrictions? This is so stressful but thank you for telling your story.

Kimmy said...

Dear sQuish: I'm glad that you have found this blog helpful. Regarding the ice . . . yes, I did use ice for the first day or so, but I'm not sure how much it helped because I had a bandage over. I'm sure it was somewhat effective, but I think there is going to be some swelling no matter what you do. Regarding physical restrictions, none were given to me directly, but I know from my own experience that for at least 2 weeks I would not have been capable of doing anything really strenuous. I am sure your doctor will be able to give you instructions on how much you can or cannot do. I'm sure the biggest risk is affecting the incision and not "breaking it open" due to strenuous activity. Hoping and praying all goes well for you as you prepare for and have the surgery.

LM said...

Hi everyone! I wanted to give an update with my recovery. I had my surgery on May 4th 2016. I've been off of my pain medicine for two days. I do have swelling and honestly I think I look pretty bad right now. What the scar is going to look like scares me but I can't really see it as there are still steri strips over the wound. I also am numb under my chin to the wound, has anyone else experienced this and does it go away?

SQuish my DR told me not do lift or bend down and also no gym for two weeks.

I hope everyone is doing well!

Anonymous said...

Hi, I am so glad I found this post. I am 30yrs old and mother of 2.I had severe infection in my cyst that was then we came to know about the cyst.I had my operation on 28th April and was in hospital for 2 nights. Stiches were cut a week after and have still not washed my hair :((when can I wash them). Still there is pain and could notice some swelling. And after eating something tells like something is stuck in my throat.

Kimmy said...

Dear SQuish: Thanks for posting an update. I've been wondering how you're doing. Regarding the numbness . . . yes, I do recall that feeling. And don't be too terrified about how the incision looks. Have you had a chance to look at my pictures of recovery over the span of a year? If not, the pics are located in the tabs at the top of my blog, right under my blog heading. Click on "Surgery Photos" and you can see the process. 2.5 years later and mine is probably not noticeable to people who are taller than me . . . there definitely is still a scar, but I think considering what it once looked like, it's looking great now. I'm glad to hear your doc was able to give you specific instructions about the gym, etc. It's so great you are already off you pain meds! I hope and pray that your recovery continues to go well.

Kimmy said...

Dear Anonymous from May 10, 2016: I'm glad you were able to find this blog. Regarding washing your hair . . . yes, I do recall that being a challenge at the beginning. I used a bathtub and just lay down in the water. Of course that didn't do a great job of rinsing, but at least it was better than not doing anything about it at all. Your surgery was still fairly recent, and while it was some time ago that I had my surgery personally, I do remember being in pain at times at least a month later, also, I know what you mean when you describe the feeling of having something stuck in your throat. I would think that's due to the internal swelling that is happening, but I would advise you to check with your doctor if you think it to be abnormal. Thanks for posting here. Hope and pray you continue to heal well.

sQuish said...

Hi. I haven't had the surgery yet. I go in to see the ENT this Thursday. I have to say tho that I'm sooo scared. I just want to get this done and over with.

sQuish said...

Oh I I really apprieciate that you have been so awesome with this blog especially since your surgery was awhile ago.

sQuish said...

Thanks LM for the gym info

LM said...

Thank you Kimmy :)

Kimmy said...

sQuish: Sorry if I misunderstood something I thought you had written . . . I may have addressed a reply to a comment to you and it should have been addressed to someone else . . . sometimes I cannot keep everyone straight! :) I can understand why you want to have this taken care of as soon as possible. I'm glad the blog and comments from other surgery patients has helped answer some of your questions.
LM: You're welcome! I know from my own experience that there is very little written about this, especially first-hand information, so that's why I started writing about it on this blog. It seems that many people have benefited from it and that makes me SO GLAD!
Take care, all!

Anonymous said...

Hi, just wanted to know when did your swelling go as it's been 2 weeks since operation and I could notice lot of swelling..tia

Kimmy said...

Dear Anonymous from May 12/16: It took at least a month before I noticed the swelling reduced. The major swelling was gone within 2-3 weeks, but my neck really never did start returning to "normal" until around the time of my 6 week check-up. I think everyone heals at a different rate, but I'm sure it's just a matter of time before yours lessens. Thanks for posting here!

LM said...

Hi Kimmy,

It's LM again I posted about a month ago in May. I had my cyst out on May 4th and as you can tell from my pervious posts that everything went very well. But now it seems I have gotten very unlucky. I have another cyst that formed right behind my incision. I can't get to the doctors until next week. This lump I have is hard but when I push on it I can move it around just like I was able to with my other cyst. I think if this was normal swelling, I wouldn't be able to move the ball around. The cyst is in a completely different spot this time though. I had the sistrink procedure done where they removed the hyoid and tract. My doctor said it wouldn't come back and now I am really confused. I am also very upset because I do not want to have to go through this surgery again. Has anyone ever had their cyst come back? And is there any advice on something else this could possibly be (although I know what the cyst feels like and this new "lump" feels the exact same). Thank you.

Unknown said...

Hello my name is Jennifer and I had thyroid cancer in 2013 I recently went for my yearly ultrasound and while I was there I told the lady that I was having trouble swallowing that it felt like something was in my throat so she end up doing a different ultrasound where she was able to see it and boom there it was even have an ultrasound since 2013 and they'd never seen anything because she was never looking further into the neck she was only looking through the where thyroid was which sucks because I recently had an MRI in 2015 which show that I had a little tiny cyst in my neck which in 2016 my recent ultrasound for my thyroid it showed that it was a little bit bigger and millimeter something with a millimeter I would always go for my thyroid ultrasound because I took up my whole thyroid because I had cancer in it which the operation is the same as the one with the cysts will they have to cut your neck and I was in the hospital for 2 days that's just because my vitamin D was low a lot of times when they take out your thyroid they can mess up your vitamin D which brings as well so now I have to take 2000 milligrams of Vitamin D everyday but yes so I had my ultrasound done now they want me to get a CT scan with iodine I guess just to see if there's anything else that swollen lymph nodes are very swollen which in 2013 they took a couple of those out to with my thyroid but today I'm feeling on my left side underneath my chin it feels like a ball and it's very painful so I'm looking for a ENT doctor I live in the Skokie Chicago area if anybody out there knows a good doctor that I can go to I want your doctor Tojo at Lutheran General Hospital in DesPlaines which he no longer takes my insurance he's the one that did my thyroid surgery cancerous thyroid surgery he's a very good doctor very very good but for some reason he's not taking my insurance anymore and he's not taking any new patients so I can't go to him or I have to pay Outta pocket which I don't have any money because I'm not working right now so I'm kind of out of luck right there so if anybody of you out there that lives in that area that knows a good ENT doctor please let me know so my next step I guess now is getting a CT scan with iodine getting an appointment with the ENT doctor and see what he says if I need an operation to take it out or just to leave it in I am having swallowing difficulties not all the time sometimes when I swallow I feel like a little lump in my throat but I heard that if you leave it and it gets bigger you can cause you to have breathing problems so I'm not really sure what to do but this is a very good site I really appreciate everybody putting in their remarks in their experiences that they had with this procedure it really helps thank you very much and have a great day

Kimmy said...

Dear LM: Sorry it took me so long to reply. Thanks for the update. I hope and pray that you do not have to go through another procedure like your previous one . . . I thought that once the hyoid bone and tract was removed, this type of cyst would not return. Perhaps it is something else . . . in any case, please report back after you've seen your doctor, as I am concerned for you.

Kimmy said...

Dear Jennifer: Thank you for commenting here. I hope and pray you are able to find a doctor that is able to help diagnose your problem. Please feel free to provide updates as you can, and maybe there is someone else who reads this blog that could give you the information you are seeking regarding an ENT doctor.

Anonymous said...

Hi Kimmy,

My 3 1/2 year old daughter likely has a TGDC. Has seen pediatrician. Her ENT appointment is next week and I'm anticipating a Sistrunk Procedure surgery. Did your doctor discuss with you the long-term implications of removing part of your hyoid bone? I'm most concerned about this. Have read how this bone is crucial to speaking, swallowing and breathing. Just worried about long-term complications, i.e., surgeries later in life requiring intubation, increased risk of sleep apnea, etc. Would appreciate any light you can shed. Also, if anyone else's toddler has undergone this procedure, would appreciate hearing how it went. Thank you.

Kimmy said...

Dear Anonymous from July 11, 2016: I am unsure of the long-term implications of removing the hyoid bone. I was in my early 40's when I had this surgery, so it probably hasn't affected me as much as it would a toddler/pre-schooler, since they are still growing a lot. I think your concerns are valid, and I would ask your doctor more about that. I haven't had any isssues iwth speaking, swallowing or breathing since I've healed from the surgery; however, I used to sing for long periods of time and I am unable to do that now. My endurance to speak for extended periods of time has likely been compromised as well, although I don't notice that as much as how the surgery affected my ability to sing. I appreciate your comment here on my blog and would like to know how everything progresses from here for your daughter. I'll be praying for success for her!

Unknown said...

Good luck with your daughter's surgery. From what I read, children have an easier time of it. I had my surgery at 60 after many bouts of swelling. I do notice that what singing ability I had is gone. I retired from teaching art and it was harder to speak for longer times too. When I get a cough, the vibration in my neck is now like rolling thunder too. Scary sounding. Worth having done though because a former student just hugged me and hit my scar tissue. It hurt so I advise putting up an arm to keep a hug from hitting the neck. That was what kicked the cyst into high gear again 3 years ago and when I had it taken out. I am grateful for your website as there is so little about this subject. Veronica

sQuish said...

Hi there. So I had inquired a few months ago about this surgery on your blog and I actually just had the procedure done yesterday morning. I was soooo scared and nervous. However my ENT Doctor was amazing. I stayed in the hospital over night and I am now home. I have to go back in the morning to have my drain tube removed. My cyst was very large and they had to remove part of my Hyoid bone. I have to say how pleasantly surprised I am with everything. I have no swelling what so ever and the Doctor doesn't anticipate any. I'm quite shocked about that but in a good way. I am sore but I expected to be sore. I have no dietary restrictions either. My ENT happened to be a plastic surgeon as well. He has been doing this procedure for many years and said that mine was one of the largest thyroglossal cysts he's seen. It was behind the bone and was getting bigger. I get the stitches out next week. If it weren't for the tube and bandage you couldn't tell I had surgery. And again my thyroglossal cyst was a monster. I truly believe that choosing the right Doctor makes a difference. Thank you for your blog, I appreciated all the info.
Again I can't believe the amazing results of my surgery.

Kimmy said...

Dear SQuish: I'm so pleased to hear that your surgery was so successful! Thanks for providing an update. I hope and pray your healing continues in a positive way.

JennyP said...

Hi. I am pretty nervous about having this done on Monday. Thanks for all the posts! What has everyone used to help with scarring? Are there any creams/oils that help reduce scarring? Thank you!

Kimmy said...

JennyP: I'm glad these posts and comments have been helpful for you. I used a vitamin E cream, and I've heard that Bio-Oil and Maderna (sp?) are likely a better choice. They are more expensive, but I would say it's worth it in the long run to spend more on something like Bio-Oil if you can. Hope and pray all goes well for you on Monday.

Unknown said...

Has anyone noticed problems with aspirating food or water after Sistrunk? The cough that I get may not be viral at all. Ever since I had this surgery, my cough is like rolling thunder in my throat. Yesterday, I got the cough again after some water went down the wrong pipe. Anyone else? I notice that the hyoid bone is integral to eating and swallowing. Thanks. Veronica

Teresa Webster said...

My 5 year old daughter had her cyst removed on Friday it's now Sunday and after surgery she ate like never before just needed some water sometimes to help the food go down but kept saying I'm fine.Next day was painful for her and the swelling was very noticeable but today she is definitely feeling much better which I am very shocked at but extremely pleased about.

Kimmy said...

Veronica: I have not experienced what you mentioned, but I do agree that the hyoid bone serves a purpose. Removing it will likely have an affect on some people, and others not. I hope it gets to be better for you over time. Thanks for posting!

Teresa Webster: Sounds like your daughter is recovering quite well, and that's great. Thanks for posting! God bless, and take care!

sue said...

Hi my name is Sue and I am 50years old and I live in England.I first noticed a lump in my throat in March of this year.I went straight to my doctor ,who set me up for various blood tests and then I was sent to an ENT specialist in Taunton,Somerset.He was able to put me at ease straight away by telling me that it was not cancerous but a THYROGLOSSAL CYST.I went in for my op on Friday September 23,I was very nervous,but the staff were great.They gave me a brief dicription about my op,I didn't want to know all the ins and outs as I was feeling nervous.It only to 30 seconds to get me under,with a gass mask,an hour and a half later and it was all over.They did say that I might need a drain in ,but it was not needed.My wound was glued ,so no stitches.I was able to go home at 8 oclock that night.Initialy I found it difficult to swallow,mouth very dry and sore.I am not getting great sleep,but I am not taking painkillers now and it is only sunday pm.My face and neck has started to get pins and needles now and the bruising is going .My doctor has told me to stay off work for 2 weeks which I think is a very good idea as I have a physical job .Thank you so much for your information site and kind words to all that you are in communication with .

Kimmy said...

Hi Sue: Thanks for sharing your story. I'm sure it's been a help to others who have been reading all the comments. I wish I could have had my incision glued instead of stitched--I think there would be less scarring. And the fact that you were advised to take 2 weeks off from work is a great idea. I wish my doctor had given me the same instruction. I returned to work too soon and that is one regret I have . . . not taking more time off right after the surgery. I hope and pray you heal successfully. -Kim

Anonymous said...

Hi Kimmy,

Thank you for sharing your Sistrunk Surgery story. There are not many people that have had this done, so it seems a little daunting when there is no one that can offer any first hand experience.
I have been having thyroglossal issues for the last few years, and it seems to be getting progressively worse. I went to my ENT last year, and he recommended that I get the procedure done. I chickened out after hearing what was involved.
However, this past March, it reared it's ugly head again, and I had to take antibiotics for the infection to go away. The infection has caused a scar to appear on my skin, right in the middle of my throat, and I can now feel and visibly see the cyst through my skin.
I have built up the nerve to go ahead with the procedure, as I do not want it to get worse, and then make the surgery more complicated.
I'm still very afraid and anxious, and worried about any complications that may occur during or after the surgery.
Thank you for your posting your story and pictures for others to read. It's much appreciated! Also, your scar line looks amazing a year post-op. You wouldn't notice anything unless you knew what to look for.
All the best!

Kimmy said...

Hi Anonymous from May 29, 2017: I'm glad you've decided to have the procedure. You commented on my scar--it looks even better now, more than 2 years later. I still get strange looks (especially from people who are shorter than I am--I suppose they can see my neck better than someone who is taller than I am), but I don't feel as self-conscious about it anymore. I hope all and pray your surgery goes well. Take care!