Im going to meet with a surgeon next week to discuss a thymectomy. Are there any questions you wish you had asked before doing yours? How many thymectomies is enough for a surgeon to be experienced at this? Would appreciate any thoughts, i don't want to think of stuff after the appointment!

Weekends are sometimes slower for replies.
If you don't get any right away don't be discouraged, you can also do some forum searches for thymectomy - the search link is in my siggy.

Hi Jam - welcome.

I have not a thymectomy - but many folks on here have..and lately there has been some discussions on what kind of procedure, the pros and cons, etc.

Use the search for that JoMar provided - and you will undoubtedly come up with more info than you may have wanted.

Are they removing you thymus because of hyperplasia, tumor, or neither?
What work ups have you had that make a thymectomy warranted?

Of course every doc is different..but sometimes the reason to remove and the size of your thymus are the driving factors for what kind of surgery is an option for your case.

If it were me, I would want to know all the details: procedure, recovery path, length of time in hospital, length of home recovery and what to expect, range of outcomes. Worst case and bet case scenarios. The pros and cons of doing nothing (not particularly relavent in case of tumor).

While I haven't had a thymectomy, I have had enough other surgeries to know that you need to go to your appointment with your questions WRITTEN on a paper. Otherwise, you will forget something you really want to ask. And be prepared... many surgeons get a bit ruffled when asked too many questions...so your diplomacy must be superb!

Good luck with apt - - let us know how it goes.

Hi, Jamh1. Welcome. I'm sorry, I haven't had a T either.

Is your MG well-controlled right now? Many people have plasmapheresis before a thymectomy to help keep MG under control.

There are drugs that can make MG worse. Muscle relaxers, which can make MG worse, will often be used to intubate patients. A pediatric gas can be used effectively instead of that, such as Sevoflurane. Morphine will more than likely be used for pain but they try to take MG patients off of it as quickly as possible since it can greatly reduce breathing capacity.

As far as how many thymectomies, you have to ask how many they've been in charge of, not only been involved with! There aren't a lot of MG patients, so it's hard to say if the number of them is the key to feel reassured. They should have enough knowledge to patiently explain the procedure to you. If they get flustered, it might be because they don't have the knowledge or don't feel confident in doing it. Did you research the surgeon(s)?

You should talk about drugs, procedure, recovery time, complications, drug interactions (tell them everything you take, including OTC's), other conditions you have and, perhaps, if they have references from other patients.

What your instincts tell you might be the most important indicator of the confidence you feel during the appt. with the surgeon. And don't feel shy about making a phone call after the appt. if you have more questions. Ask them if you can call them!

When is your thymectomy scheduled for? Is it soon?

Many people have had it and done fine. You'll need help afterwards. Depending upon what type of thymectomy you have, you'll have physical restrictions for a certain period of time.

I really hope it goes well for you. More people should be here to help you soon.

Annie

thanks for the feedback so far.
i am newly diagnosed with mg. i have a large thymoma so i think the sternum splitting is the way to go for me from everything I've heard and read. good point about asking how many they have been in charge of, wouldn't have thought of that. thanks all for any other questions which might help me make sure that the surgeon is on the right track!

I was diagnosed in Dec and had my surgery in April. A thymoma was present, and I had a full median sternotomy. I also had a round of plasmapheresis immediately prior to the surgery. You have gotten good advice from others in prior posts, I would add that you should ask how closely your surgeon has worked/will be working with your neurologist. You certainly want them to have a good working relationship.