Thymectomy
 

Greetings all...

I was recently diagnosed (June 2013) with a positive antibody test and SFEMG. My first symptoms were a droopy eyelid and double-vision (May 2013). My current MG symptoms are ptosis, double-vision, face droop, some fatigue, and little swallowing issues. I'm taking daily Mestinon (60mg x 3) and Prednisone(10mg dose) and feeling fine for the most part.

I know that I am very fortunate to have been able to get diagnosed and tested this quickly. I've been seeing an Neurologist who has a specialty in MG and he fits me in to the MDA clinic for appointments. I just turned 41 and he recommends a Thymectomy (VATS method). My thymus is "normal" - no thymoma present in the CT but both he and the Thoracic Surgeon (who I saw today) recommend the procedure.

This is just moving so quickly and it is freaking me out :eek: They want to get me prepped for surgery with plasmapheresis or IVIg shortly after my family vacation in August.

WOW! ...this is fabulous! :) The sooner the better and believe me, giddy-up means you won't have as much time to worry about it. Boy, oh, boy, your doctors know their stuff....wonderful! :)

I had a VATT back in 2000. It was really easy for me. You'll likely feel more discomfort/inconvenience doing the pre-op treatments than the actual surgery.

Keep us posted! Good luck!

Your story sounds much like mine....trying to decide on surgery now...... Do I do davinci robot or not???? One dr says yes and one says no....urg!

I would go for the robotic surgery if I had the option. Recovery will be so much faster.

I wish that my doctor thought that a thymectomy would help me. Since I am seronegative and have no evidence of a lesion in my thymus, he doesn't see to think it would be of benefit.

So how did the surgery go? I'm similar in age as you and also have no thymoma. I just spent 7 days in the ICU and received 5 days of IVIG and am getting ready to start biweekly IVIG treatments this week.

I'm doing much better now with some occasional double vision, speaking and swallowing problems, and a droopy lid once in a while.

My neuro has me seeing another neuro next week for a second opinion who he believes will agree that a thymectomy is the best option long term with IVIG, mestinon, prednisone, and maybe cyclosporine in place of prednisone since I haven't responded to the prednisone as I ready for the surgery.

I hate to be a downer, but just because your CT scan doesn't show a tumor, doesn't mean there isn't one. I had my thymectomy in 2005 and even though the CT showed no problem before surgery, I had a stage II malignant tumor for which I had 28 radiation treatments. I would do the surgery because something is wrong with the thymus otherwise you wouldn't have mg. Good luck with your decision.

My opinion is to have the surgery as soon as YOU are ready and stable enough. If you think you could go under the knife tomorrow, then schedule it. If you don't feel comfortable with it yet then wait, but don't put it off too long.

My myasthenia was diagnosed after my neurologist didn't tell my orthopedic surgeon he suspected myasthenia. As he only suspected I had it and didn't want to hold up my hip surgery, he told me to have the testing done afterward. Which was really stupid in hindsight since the surgeon sent me to him for clearance. I stopped breathing on the table as a result of his neglect.

After hearing I almost died, he told me that he knew what my problem was. Immediately after this, he wanted me to have the thymectomy using the open chest method.

I didn't like the pace things were moving at, either. Instead of seeing his surgeon, I made an appointment at University of Maryland and met with surgeon there who does them through the ribs if you don't have tumor. He told me he'd do the surgery, but not until his neurologist cleared me.

I met with the neurologist, who specializes in MG, and she said I wasn't strong enough. She ended up treating it medically for two years, even though she had planned on doing it within six months. She kept saying we're missing something and she wouldn't risk the surgery until she knew what the complications could be. It turned out to be the SPS.

Anyway, when they finally did the surgery, the surgeon told me that there was no tumor, but the gland was slightly enlarge and he used another word to describe its abnormal appearance, can't remember it, though.

One year on, I'm definitely feeling better, but think it will still take some more time to see the full benefit.

If you don't feel comfortable with the pace your doctor is going at, definitely get a second opinion. My doctor later told me that if I'd followed the first doctors instructions, it could have turned out bad as you need to be stabilized to a certain extent. She would have preferred to do it a year or so sooner, but I'm a complicated case.

If you're on the east coast and want to know the name of my doctor and surgeon, let me know. Another place you could try, if you're not on the east coast, would be Mayo. I had a consult for the SPS and they really helped.

So you suggest surgery even if there is no tumor on the Thymus?

That is a decision only you and your doc can make. I am certainly glad I had the surgery. I think the younger you are (I was 55), the better the results. Maybe I had another incentive because the docs saw an enlargement of the lymph nodes in my chest and the original biopsy was non-conclusive. Since they felt it might be lymphoma, they wanted to go into my chest and do another biopsy (wanted to use microscopic procedure). I talked to my neuro and decided if they were going into my chest anyway, they were going to remove my thymus. I was having a bad relapse with the mg and had just started on IVIG in May, 2005. It helped but I was still extremely weak. At that time, I had read several stories of mg patients with ct scans that showed no problems with the thymus, but when they had the surgery, there were a lot of problems with the thymus. Adding everything together, I insisted they crack my sternum and do the open chest procedure (remember this was 8 years ago and the non-invasive surgery was in its infancy). So in Aug, 2005, I had the surgery which the results I noted above. I have never been sorry.

FYI - the swollen lymph nodes were sarcoidosis - another autoimmune disease where you grow tumors inside your organs (kidneys, liver, etc). Fortunately, I haven't had any additional problems with the sarcoid - I just have to have an annual checkup.\

Good luck with your decision.