Recently I’ve had a huge number of new visitors to this blog and, probably correspondingly, a great variety of new health-related search terms that have brought people here. To all of these visitors I want to take this one post to say welcome and more importantly, I get it.
When you’ve got a diagnosis of a rare condition and are advised to have a rare operation to possibly help the rare condition you can’t just call up a friend to hear about how her roommate dealt with it or ask a colleague what his brother did to prepare. Sure there’s tons of medical information out there about what it all means and how it all works, but more often than not these sources don’t answer the burning questions: What’s the pain like? How much time do I need off work? When can I go swimming again? Trust me, I get it. I hunted around the Internet for tales from those who’d done it too. And now, in the interest of good karma, I feel like I should add my own experience to the mix.
*Remember, I am not a medical professional nor do I work in healthcare. These are just my own thoughts.*
Search terms: Thymectomy, recovery
My recovery has been ok. The worst part was actually in the hospital before my myasthenia meds were adjusted so I’d advise you to talk to your neurologist to figure out your schedule for after the surgery. My worst day by far was the second day after surgery when a couple of doses caught up with me all at one. Scary slide towards crisis. But my neuro came immediately and we fixed it. Other than that I was out walking around the corridors and before heading home I was able to walk up two flights of stairs. Other than that, life returned to normal (myasthenia normal) pretty much the week I got home. I didn’t do any work for about 4 weeks and really didn’t get back into the swing of things until about 6 weeks.
Search terms: Sternotomy, bra
DEFINITELY bring bras to the hospital. I wasn’t able to wear one until the drainage tube was removed but once everything was all held up and tucked in like it should be I felt a lot more comfortable. Also, bring at least one bra that is a size larger than normal for the first week or so when there’s some pretty noticeable swelling. My bras all had underwire (I wouldn’t really recommend trying to wrestle yourself into a sports bra those first few weeks) so the nurses and I just used gauze to slip into the middle to keep everything nice and soft against my skin. When I got home and realised how expensive gauze is at the chemist I just switched to cotton cosmetic pads. I stopped wearing them everyday at about 6 weeks, but I still have a supply on hand depending on the bra.
Search terms: Sternotomy, swimming
Maybe it’s because it’s the summer, or because floating always feels amazing for my muscles, but that was one of my big questions too! At the hospital I was told not to swim until I saw the surgeon for my post-op check-up so I didn’t. I saw the surgeon at about 7 weeks post-op and he said no problem, I could go whenever I felt like it. I’ll probably give it another few weeks, bringing me to about 10 weeks post-op. I know on the Web I saw a few places advising 3 months, but for me it’ll be a case of the sooner the better. I can’t wait!
Search terms: Thymectomy, scar
There’s no getting around this one: good god is there a scar. About a foot long, but thin, and slightly leaning (not straight down the centre as I had envisioned). It’s ok though, the worst part is when it itches. Other than that the swelling was down by about 5 weeks post-op and at 8 weeks post-op about half of the scar had already faded to white. Personally I’m not changing necklines or anything because of the scar, though on really sunny days I do keep it covered. On days that it’s exposed I spritz on some sunscreen, even if it’s raining out.
Search terms: Myasthenia, thymectomy
I had a very enlarged thymus so a thymectomy was advised to me on the day of diagnosis. In terms of day to day routines it hasn’t yet helped (still on same meds, same number of times per day) but I’m keeping the faith. As my neuro said, this was a long term investment. I did have about four good weeks before things began to backslide, and in a way it was almost cruel – particularly my eyelid. I got to remember a bit of what it felt like to feel good and then it all went downhill again. But I live in hope.
Search terms: Thymectomy, pain AND Sternotomy, pain
I was never in any real pain. I approached discomfort a few times but just said I wanted more morphine and that was that. In fact, I left the hospital with paracetamol as my only painkiller. And honestly the worst discomfort wasn’t from the surgery sites it was because I could only sleep on my back for the first few weeks (not natural for me) and I’d wake up after just a few hours frustrated that I couldn’t change positions. It took about two weeks before I could turn on my side and about a month before I could sleep on my stomach for any real amount of time.
Search terms: Thymectomy, packing for hospital
Bring wipes. Face wipes and hand wipes. There were a couple of days in there when I had all sorts of lines connected to me and getting up to use the sink was just not happening. Also, my iPod was invaluable when I was in the step-down ICU and people were out and about at all hours. Books (light reading) and card games were really useful later in the week and lots of trashy magazines. I never used a bathrobe but I did use slippers. I also only used pjs the first few days, after that I preferred getting dressed (much to one particular nurse’s horror) but only in comfy clothes like yoga pants. Oh, and bring all meds in the prescription containers. Easier that way.
Search terms: Thymectomy, intubation
Yeah, there’s obviously intubation. But I don’t know a thing about it because the tube went in after I was out and came out before I was ever awake. I know exactly how lucky I was. When I came to I just had an oxygen mask on and got off that after a little while onto just the nasal cannula for a couple of hours. I’m pretty sure that when I was breathing well enough to curse the guy moaning in the bed next me in the ICU I was deemed well enough to come off of oxygen. (He was really loud and dramatic, and when his family was in the room he was chatting away just fine. Faker.)
Search terms: Thymectomy, visitors
I’m guessing this one will differ based on hospital policies. I woke up with Laurence next to me and no one ever kicked him out. I know, I’m also aware that I was very lucky on this one.
Anyway, those were the terms that I found repeated over and over to bring people here so I figured I’d get all the info in one post. If you’re heading in for a thymectomy, good luck! If you’re not, hope you enjoyed my over-sharing!
Well done!
Glad it’s behind you.
And speaking as someone who had major incisions, I highly recommend that once the wound has completely closed that you put a very good moisturizer on the developing scar at least twice a day for a very long time. Otherwise the itching never quite goes away. Even years later. Found that out the hard way…
Hi Beth! I came across your site when searching for “bras after sternotomy”. I too have MG and am having a thymectomy Aug. 3, 2009. I am writing this from my hospital bed while receiving day 3 of my IVIG treatment to prepare me for surgery. Anyway, I can’t say that I loved reading your posts b/c it forces me to think about what I’m about to face, but it was very informative and your attitude regarding your MG journey makes me want to be more positive(sort of!). Make any sense??? Anyway, good luck to you and I’d appreciate a prayer and good thoughts sent my way!
Beth-
You are a lifesaver! I am set to have a tumor removed via Sternotomy in about a month and I have NO idea what to expect. I have been looking all over the internet but seem to only find medical info. That’s all good and helpful but your “what to bring” and “bra” parts of this were things I never would have thought of. I’ve never been in a hospital overnight so I probably would have shown up with a toothbrush and that’s it. Thank you for your heads up!