sudden surgery

October 9, 2009 1:44 PM

Sudden substernal thyroid surgery dealing with the now and the after.

I'm an overweight 36 year old male who has breathing issues for a few years now. I quit smoking a few years ago, hoping the breathing would improve, but it didn't. So I lost a lot of weight. That helped a bit, but not too much.

My GP thought it might be my tonsils, so she sent me to an ENT. The ENT found a "large mass" in my neck, so he sent me for a CT scan yesterday. The results of yesterday's scan show that my thyroid is massive and extends below my sternum. It is also causing significant compression of my trachea. My GP called in a surgeon who wants to remove my thyroid immediately because of the severe compression and concern over choking. I've been living with the issue for awhile now and have learned to compensate.

What it comes down to is:

Today has been a snowball of phonecalls and appointments and I am lost an terrified.

The surgeon has already scheduled the surgery for Tuesday (the day before my freaking birthday). He feels that it's urgent that the thyroid is removed.

1. I want some time, even if it's only a week, just to "get my affairs in order". Yes, whatever that means. I know surgery is risky business. I have never had anesthesia before and I am overweight, so that puts me at much greater risk. Can I push for that time?

2. This is a rollercoaster. How do I deal? If I don't get that time, do I just let go and roll with it?

3. Post substernal thyroidectomy recovery. What can I expect? Everything I've read applies specifically to women. Any male specific advice?

4. I'm not kidding. If they're taking it out, I want it. What can I do to let me keep my thyroid in some preservative fluid? It's mine, dammit!

Thanks, everyone. I'm so freaking scared right now, it isn't funny, but the surgeon and my GP assure me that I'll have an immediate quality of life improvement post-surgery (breathing!).

posted by Cat Pie Hurts to health & fitness (22 comments total)

Of course you can ask to wait (is it correct choice to do so? only your doctors can tell you)
As with any major surgery you should explore getting a 2nd opinion.
posted by bottlebrushtree at 1:51 PM on October 9 [1 favorite]

For #2, what are your options? If they don't give you that time, then I'd just suck it up — if they are that freaked out, and you trust them, then they might be right. Airway constriction is not your friend. I assume you have a second opinion, but if you can tell that you are having trouble breathing, that's a pretty solid sign of trouble right there.

As to #4, if you find a method, please let me know. I don't know under what situations something like that would not go to Pathology. My guess is that you would probably want to have a nice chat with someone there, which would result in you leaving some money behind if they did not take you seriously.
posted by adipocere at 1:53 PM on October 9

As far as your weight goes, try not to worry about it. The first surgery I ever had at age 15, I crash-dieted down to about 330 because I was worried about them needing horse-level anasthesia. When I got my gall bladder out a couple years ago, I weighed a good amount more than that. I asked the surgeon if I should try to diet before to lose some weight quickly, and he said absolutely not - it would make healing and recovery that much harder.

For #4 - I was shown my gall stones after but wasn't allowed to keep them because they needed to be analyzed at the lab. (Seriously? ALL of them?) Bummer.
posted by ferociouskitty at 1:59 PM on October 9

You're going to be fine. I'd tell you take a deep breath, but...well, you know. I think you should go ahead and have the surgery and just get it over with. Find a friend or relative to be with you in the hospital - it will make a huge difference to your experience.
posted by tamaraster at 2:13 PM on October 9

I had my thyroid out (cancer) just a little over a year ago. I had a pretty significant tumor (about two inches on one side) but not as large as yours. I can't answer all your questions (I am a woman), but here's my take on some of them.

1. I had much longer to prep for surgery, an agonizingly long time in fact. It took almost two months from the time I found out I needed to have my thyroid out, to my actual surgical date. I spent most of that time reading about the treatment, and not so much about "putting affairs in order". I think that you can push for more time, but really... just get it over with. I wouldn't put it off for more than additional week or so. As for being fat and having this type of surgery, I weighed about 290 at the time. And my surgery ended up lasting about 5 hours instead of 3 hours because they found that my cancer had spread to lymph nodes and attached to muscle. I sailed through with no problems.

2. I think you do have to just roll with it. Look to friends and family for support. If I was going to prioritize issues to deal with, number one would be making sure that your surgeon is good at what he does. That is by far what took the most time and energy for me (the top surgeons I was referred to wouldn't take my insurance, so I had to find one who would). I know a fabulous surgeon in NYC who specializes in cases like yours if you want a name.

3. Again, my surgery wasn't as involved as yours may be, but it was more involved than many thyroidectomies (16 lymph nodes removed, some muscle removed). I was hospitalized one night. Had lots of muscle pain for a few days, and a sore throat from intubation. But I was able walk down the block within three days. I didn't take any pain pills after the third day. I missed 7 days of work. I credit my speedy recovery to my good surgeon.

4. I just wanted to see a picture of mine... and the resident HAD A CAMERA, and they still wouldn't do it. However, if you get a pathology report, it will have lots of fabulously gory details (color, texture, weight, size) so that's a nice consolation prize.

A year out... I think of the whole experience as a big inconvenience. As far as maladies go, it could have been much worse. And now that it's over with I feel a million times better, my energy has vastly improved, and you can't even see my scar. Feel free to MeMail me if you have questions.
posted by kimdog at 2:26 PM on October 9

Hey cat pie hurts! Sorry to hear you're having to deal with this. IANAD, but my thoughts are that since you've been dealing with this for a while and are compensating for the breathing issues, it wouldn't hurt to ask them to give you an extra week so you can get a second opinion and at least get some things in order - like finding someone to be with you after surgery, getting time off work, etc.

Take care and I hope everything goes extremely well and you heal quickly. <3
posted by garnetgirl at 2:33 PM on October 9

As far as what to expect afterwards, this is not a direct answer to all four of your questions, but an hour after my 19-year-old sister woke up from having her thyroid completely removed she was wolfing down a Big Mac value meal and a pint of ice cream.

It was malignant, metastatizing, and she went through three rounds of radioactive iodine -- and is now happily married and fine. She never complained about excessive pain and, five years later, is approximately the same weight she was before (a healthy one, albeit a bit thin) and we are both on thyroid medications. You just have to remember to take a pill every day when you wake up; don't worry about that.

As far as rolling with it; yes, ask for time, but the more time you have to be afraid and worry -- you probably will. I went to the dentist to check my throat because my infection wasn't getting better and 7 hours later was having an endoscopy and surgery for the first time ever. My ride home from the hospital was only notified 10 minutes before I went in and got there a few minutes before I was to be released because I couldn't find anyone to pick me up; I was grateful to have so little "freak-out" time earlier this year. YMMV.

You will have a wicked awesome scar and can make up amazing stories to explain it, if you are so inclined. I wish you the best of luck with the surgery and a speedy recovery.
posted by Unicorn on the cob at 3:17 PM on October 9

It is normal to be worried about any surgery, but thyroidectomies are pretty common and recovery should be straightforward. You will definitely need to to spend some time talking with your anesthesiologist beforehand. You say a couple of things that I would definitely want to know more about if you were my patient: your CT scan shows tracheal compression and you are having trouble breathing because of it. This combination of symptoms is potentially serious and it makes sense that your surgeon wants to operate sooner rather than later. The good news is that anesthesiologists are trained to deal with this problem and you will have not one but two airway experts dealing with you (the anesthetist and the ENT surgeon). So talk to your surgeon about delaying it or getting a second opinion, but take what he says seriously. As for your weight; unless you are well over 300 lbs. it is not likely to be a major issue. I see from your profile you are pretty young and live in an area with world-class medical centers, so you have a lot of factors indicating things will go well. Feel free to memail me if you want more detailed information or have other questions.
posted by TedW at 3:35 PM on October 9 [1 favorite]

1. I had my thyroid removed due to thyroid cancer, and by far the worst part of it was the freakout period while waiting to have surgery. I wouldn't delay surgery for the sake of getting your affairs in order--in the exceedingly unlikely event that you don't come out of surgery, your heirs will deal. What I would delay surgery for is tracking down the best surgeon. You want someone who removes thyroids all the livelong day.
2. Yes, let go and roll with it. My number one piece of advice is to get a grip on your internet usage. Remember, people with good outcomes are not in internet support groups. I had a good outcome and I haven't been on a thyroid cancer site since about a month after my surgery.
3. My recovery was pretty unremarkable. I woke up in my hospital room and was uncomfortable but not really in pain. My biggest problem was that I kept throwing up, which is not fun with a big incision in your throat, but they put a boatload of antiemetics in my IV and soon all was well. I was discharged the next afternoon and by the morning after that the cytomel had started kicking in and I had a bizarrely wonderful feeling of well being. Then over the next little bit my own thyroid hormone started washing out and I got profoundly tired and stayed that way for two months, until one Tuesday when I suddenly felt a lot better. I've been fine ever since.
4. Yeah, good luck with getting your thyroid. They wouldn't give me mine. I did have a fibroadenoma removed once and they showed it to me in a ziploc bag while I was still on the operating table, but they wouldn't let me take it home.

I wish you all the best. I know it's scary, but once it's over, I think you'll look back and realize that the experience itself wasn't that difficult, and that the hardest part was the fear and worry.
posted by HotToddy at 6:50 PM on October 9 [1 favorite]

You say that your thyroid extends substernally; does that mean you would have to have an open chest surgery? That is, would they need to crack your sternum apart in order to fully and safely remove the entire gland? If so, it will mean a much longer recovery time including quite a few restrictions and some rehab. I work in an ICU that does frequent open heart surgeries, so feel free to memail me with any questions (or just follow up in the thread).
posted by nursegracer at 2:56 AM on October 10

Thanks so much, everyone. Here's a quick update.

I (and my tonsilitis and fever-ridden body) have put my foot down. No surgery on my birthday.
I've been dealing with various breathing problems my whole life (childhood asthma to morbid obesity to heavy smoking..I've never really known -good- breathing, so after quitting smoking and losing weight, I just got used to it). I can deal with it for at least another week without issue.

My surgeon is highly recommended, out of one Boston's best medical centers(I'm starting to understand what "world class" means.). He performs thyroidectomies "all the livelong day", so I feel confident with his abilities :)

I still have tons of questions for him and the various other people involved here. They are pushing for a total thyroidectomy, even though it is not cancerous and has no nodes; it's only a diffuse growth. I'm looking into whether or not there are non-surgical options, now for shrinking the goiter.

I was also extremely upset on Friday because I received a phone call for the anesthesia prescreening and kind of freaked out on her when she mentioned "Tuesday's surgery". Someone had gone ahead and scheduled surgery without my consent. So, I haven't had that conversation with the anesthesiologist yet.

TedW - The ENT is actually no longer involved. Once it turned out to be a thyroid issue, it was shuffled off to the thyroid specialist. Though, I am seeing an Interventional Pulmonologist for a bronchoscopy tomorrow morning.

nursegracer - Right now, open chest surgery is a possibility. The surgeon says it's a maybe - he's not 100% sure yet, though. I was getting comfortable with the thought of the thyroidectomy until I started reading about open chest surgeries. That was a mistake!
posted by Cat Pie Hurts at 10:07 AM on October 12

Something worth adding:

I was going through my old AskMe's. Here's one I posted from 2 1/2 years ago from right after I quit smoking, detailing the same exact breathing problems that I've been having for the last, well, 2.5 years that have led up to the current situation.

At least now I have my answer.
posted by Cat Pie Hurts at 11:03 AM on October 12

I hope you'll come back and let us know how the surgery went, after you have it.
posted by tamaraster at 9:30 AM on October 14

The surgery is happening Tuesday afternoon and I will definitely post an update as soon as I am able!
posted by Cat Pie Hurts at 3:37 PM on October 15

Hi folks, for everyone still following:

The surgery was yesterday. I spent the night in the ICU because there were fears about my trachea collapsing. The surgeon saw me this morning and told me, in his words "surgeries like this make men like me very humble". Apparently, it turned out to be significantly more complicated than anyone initially expected (initially scheduled as a 1.5 hour procedure, it took 3.5 hours). While it was substernal, he didn't go in through my chest (but it looked like preparation was made considering my freshly shorn torso.). I was told that during the procedure, there was some blood loss (1/2 liter).

In the end, the thyroid they pulled from me was larger than a softball. It's down in pathology, and I've been promised photographs and exact stats (initial estimates were 4lbs).

Now I'm home, resting with family looking after me. I'm in a fair bit of pain, but wow, I can breathe in a way that I've never been able to to! Thanks for everyone's help and advice in the thread, now I get to heal and get strong again.
posted by Cat Pie Hurts at 4:36 PM on October 21

Wow, I'm glad you're okay! Four pounds is amazing. Please let us know when you find out the results; meantime, lie about and let everyone else take care of you. Wishing you the best!
posted by HotToddy at 5:34 PM on October 21

Thanks for the update; it sounds like you were in good hands. Glad to know things went well and I wish you a speedy recovery!
posted by TedW at 2:24 AM on October 22

Congratulations on coming through it. Breathing well sounds awesome. Best of luck in the healing process. And thanks for letting us know!
posted by tamaraster at 10:32 AM on October 22

Regarding my #4: If anyone is interested, I was able to sweet-talk one of the surgeons into sweet-talking Pathology into sending me a couple of pictures of my thyroid. I think the secret was to a) have a "ginormous thyroid" (surgeon's words) and b) demonstrate a disturbing excitement at the prospect of seeing that which has been removed. and c) Pester, pester, pester starting with the initial IV and not stopping through the last blast of post-op morphine

I'm not normally grossed out by images like this, but considering that this came from inside of me, I am officially Seriously Grossed Out™. These are DISGUSTING. One image is whole and dyed (it did NOT come out of me that color!) while the other shows a cross-section.

Pics
posted by Cat Pie Hurts at 2:32 PM on October 25

Wah, your link doesn't work! Please fix it, I'm dying to see!
posted by HotToddy at 4:02 PM on October 25

Sorry..still woozy :)

Pics
posted by Cat Pie Hurts at 5:19 PM on October 25

OMG, you're right, it's horrible! Good riddance, eh?
posted by HotToddy at 8:27 PM on October 25