Hi Chip,
Thymectomy and Thymoma can definitely effect your symptoms. You had no choice of having a thymectomy due to thymoma. You had do remove it as it can be beastly. That being said, I'll quote from an NIH study about remission:
"....When remissions were evaluated for patients who had thymectomy, it became evident that the time from thymectomy to remission was significantly and independently influenced by the presence of thymoma, severity of disease, the surgical approach, and by the duration of preoperative symptoms......"
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1492935/?page=1
My oncologist told me that I am less likely to go into remission due to thymoma. My neurologist seems to think I can still go into remission. I am 1 year out from my thymectomy and still have symptoms with no real improvement. Of course, everyday is a new day with MG. My symptoms and severity of can change daily.
I take 90mg mestinon 4-5 times a day and have had IVIG or plasmapheresis on a regular basis. Still keeping my fingers for remission. I'll never give up hope.
Good luck
~Sherry

Hi ChipA, welcome to the forum. Sorry you are having to find a forum for MG. I would say definitely you are being way too hard on yourself at this point. It's only been 22 days since your thymectomy. I had only hyperplasia but was told it would take at least a year to see benefits from the surgery. You are certainly feeling the effects of the surgery. Thymectomy is major surgery and will exacerbate your symptoms. How long did you have symptoms before you were diagnosed and what kind of symptoms are you experiencing? I have heard that the more quickly you are diagnosed and have the thymoma removed the better the chances of improvement/remission, similar to what newmugg is saying. I also take 60mg of mestinon every 4 hours and have IVIG every month. I watch for improvement daily. I'm glad you found us here. Research when you have the energy and give yourself time to heal. Believe me, we all know how frustrating it is.
Cathi

Thank you guys for your response.

Sherry, That was discouraging but, don't worry...like you, I will NEVER give up hope. I was told the prognosis was very good by both of my surgeons and my neurologist and by both of my family member doctors. They all quoted 80-85% chance of remission after thymectomy. Finding the thymoma was the (smoking gun) and removing it should cause the disease to get much better or go into remission...yada, yada, yada. It appears your Oncologist has a different opinion. Maybe different facts?? Which brings me right back to my problem. I can't seem to get a straight answer from anyone. From everything I have read, it doesn't appear there is a "straight" answer.

Oh well, more research. And, thanks again for your responses

I do have one more question regarding work. All of my doctors are telling me this is controllable with medication and I should be at work now with no issues. I feel fatigued much sooner now than I did before the thymectomy. I assume this is due to my body still recovering from surgery? I was planning to return to work 3/28 (three weeks post op) but, I wasn't comfortable walking two blocks from bus stop to office in the morning then, three blocks from office to bus stop after working all day dodging Houston traffic when I have some difficulty walking around the house. Is there an average time when most people feel well enough to return to work without fear of falling and being run over?

Chip,
I didn't mean to be discouraging. They call this disease the "snowflake" disease because everyone is different in their
symptoms,treatment and remission.
I agree with Cathi---give yourself some time to heal and research when you can. Be sure to ask for a copy of your thymoma pathology report then research the results. (I had a thymoma)
I see that you are from the Houston area. I have heard there are some good MG neuros in the area.
Glad you found this forum...I have learned so much.
~sherry

Sherry, I know you did not mean to be discouraging . And don't worry, I am still positive and try to stay lighthearted about life. I have to be with my medical history. Problem is, everything that has happened to me in the past was due to something I caused. i.e. car accident, motorcycle accident, football injury..etc. This is uncharted territory for me.

I am glad I found this forum. It means a lot to me being able to communicate with other people who have experienced this.

Regarding returning to work, I was off work for four months but I had a partial sternotomy. I'm just guessing you had a less invasive surgery? I can't imagine your doc telling you you should be back to work already unless your sternum is intact or you have a desk job. Even with a desk job that would be difficult. I had to be able to lift if necessary and couldn't lift more than 5lbs for three months after surgery.

I do know of a woman in my area who also had a thymoma and thymectomy with the same surgeon I used. Her MG was diagnosed and the thymectomy done within three months of the start of her symptoms. She told me within a few weeks of the surgery she knew she was better and is now symptom free and considered in full remission. My surgeon told me this was a rare outcome and I should expect an 80% chance of improvement but not remission unless I'm extremely fortunate. So far I would say I'm improved but still in the phase of waiting for serious improvement. I like your attitude, there is always hope.
Cathi

Hi Chip

Well my full story is under my profile, so I wont re type it here. All I can offer now is hope, things do get better with time, I know that it is frustrating at the moment, I have or am going through the same thing. The issue is you never know if t is the post op recovery or the MG that is causing you to feel bad. It is a bit of a guessing game.This week I am 10 weeks post Thymectomy (I had the full sternum procedure) but still feel loads of discomfort, and have some good and some not so good days.

Regarding ther remission, well everyone I spoke to told me that it will get worse before it gets better, which it did, and there were NO gaurentees given tome regarding the possibility of remission, but as I had a Thymoma I had no choice regarding the thymectomy. All the research that I have done shopws me that there is little or no actually clinical results that prove a direct link between a Thymectomy and remission, and at best around 50% of patients do do into remission.
But Hey, like everyone else on this forum I too live in Hope !

Hang in there and be strong, it does get better

Regards
Christo

Cathi,
I got the full meal deal. Full sternotomy complete with #20 bailing wire. Can't lift anything heavier than five lbs for three more weeks. Guess the MG is a blessing in disguise. Otherwise, I might be out doing something crazy like...yard work. Add another scar to the list I can show my grandson.

My symptoms came on quickly...within a couple of weeks. I was diagnosed ~Feb. 10th and had the thymectomy March 7th. The last two months have been a blur for me.
That is encouraging to hear about the woman close to you.

Chip

HOLY FREAKING MOLY!!! Chip! Your surgeon or neuro or whoever is telling you you should be back to work has lost their mind, in my humble opinion. I'm thinking they've never had their sternum cracked much less undergone such a serious surgery and tried to deal with MG at the same time. Your response had me firing up the laptop again, dang!

On the subject of how quickly you had your symptoms start, were diagnosed and had surgery, I would count this a something to be optimistic about. I think you have the best chance of an excellent outcome. You just need time to heal.

I have to go lie down now, lol.
Cathi

Hi Chip,
I can not believe you had a full sternotomy and released the next day! I was in the hospital for 5 days and only went back to work part time, after 3 weeks .And that's only because I own my own business and had to.. Mg is a very frustrating illness at times. I had surgery 2 years ago and had to really search for an experienced neuro. Finally, I am starting to see a significant improvement in my sypmtoms. I have days when I feel almost pre mg. When I have a bad day, I always remember tomorrow can and will be better.Your body went thru major surgery and it needs time to heal. I was a very active person also, but have had to learn to take things a little slower. I I think the best thing you can do is go on the MGFA website and learn all you can. Find a dr. that is there for you. It will be a life long partnership. Keep looking until you find one. My new neuro is wonderful. She has me e-mail her with any minor questions and she always gets back to me within a few hours. If I feel I need to talk to her, she always calls me right back.

I had a thymoma also. Make sure you get your path reports and know what stage it is. Mine was Stage 1,B-2. Make sure you have follow up cat scans to check for reoccurence. Unfortunateley my last scan showed a suspicious lesion on my pleura, so they are considering surgery to remove it.

Stay close to the boards....they are a wealth of information and support. The one thing this disease taught me ( and I was never good at it) was to be patient with myself. Healing , body and mind, takes time....but it does happen!

Good Luck!

Judith

Hi Chip,
I can not believe you had a full sternotomy and released the next day! I was in the hospital for 5 days and only went back to work part time, after 3 weeks .And that's only because I own my own business and had to.. Mg is a very frustrating illness at times. I had surgery 2 years ago and had to really search for an experienced neuro. Finally, I am starting to see a significant improvement in my sypmtoms. I have days when I feel almost pre mg. When I have a bad day, I always remember tomorrow can and will be better.Your body went thru major surgery and it needs time to heal. I was a very active person also, but have had to learn to take things a little slower. I I think the best thing you can do is go on the MGFA website and learn all you can. Find a dr. that is there for you. It will be a life long partnership. Keep looking until you find one. My new neuro is wonderful. She has me e-mail her with any minor questions and she always gets back to me within a few hours. If I feel I need to talk to her, she always calls me right back.

I had a thymoma also. Make sure you get your path reports and know what stage it is. Mine was Stage 1,B-2. Make sure you have follow up cat scans to check for reoccurence. Unfortunateley my last scan showed a suspicious lesion on my pleura, so they are considering surgery to remove it.

Stay close to the boards....they are a wealth of information and support. The one thing this disease taught me ( and I was never good at it) was to be patient with myself. Healing , body and mind, takes time....but it does happen!

Good Luck!

Judith

Hi Chip,
I can not believe you had a full sternotomy and released the next day! I was in the hospital for 5 days and only went back to work part time, after 3 weeks .And that's only because I own my own business and had to.. Mg is a very frustrating illness at times. I had surgery 2 years ago and had to really search for an experienced neuro. Finally, I am starting to see a significant improvement in my sypmtoms. I have days when I feel almost pre mg. When I have a bad day, I always remember tomorrow can and will be better.Your body went thru major surgery and it needs time to heal. I was a very active person also, but have had to learn to take things a little slower. I I think the best thing you can do is go on the MGFA website and learn all you can. Find a dr. that is there for you. It will be a life long partnership. Keep looking until you find one. My new neuro is wonderful. She has me e-mail her with any minor questions and she always gets back to me within a few hours. If I feel I need to talk to her, she always calls me right back.

I had a thymoma also. Make sure you get your path reports and know what stage it is. Mine was Stage 1,B-2. Make sure you have follow up cat scans to check for reoccurence. Unfortunateley my last scan showed a suspicious lesion on my pleura, so they are considering surgery to remove it.

Stay close to the boards....they are a wealth of information and support. The one thing this disease taught me ( and I was never good at it) was to be patient with myself. Healing , body and mind, takes time....but it does happen!

Good Luck!

Judith

Chip -- I think we are twins! I was diagnosed on February 18 (symptoms started Feb. 14), docs discovered a thymoma and I had my thymectomy on March 8. The surgery really knocked me down for a while, but I went back to work on March 22 -- still have MG though. But I get a little better every day -- I am very impressed that you were discharged right after your thymectomy -- I was in for 5 days in cardiac recovery.

I am much too fidgity to be a home for more than a week, and I'm glad to be back at work (where I have no physical requirements and my commute is a 2 block walk). I am on 60 mg of prednisone, and take about 450 mg of mestinon over the course of a day (90 x3 and one 180 at bedtime).

I find eating is quite a challenge, swallowing takes more concentration -- the double vision is bearable and in the morning I am pretty near normal. My voice has changed. This thing happened really quickly, and it is a life-changer, but people seem to think I'll be okay. We just need to give it time, you and I! Stay healthy and avoid sugar while on the prednizone. ~joe

Joe,
Good to hear you are back to work so soon. I was ready to try 3/28 but, I have been feeling my body is on the verge of crashing for the past two weeks. I am taking up to 300 mg of Mestinon twice a day then 180mg at bedtime. I think I am getting better now as I am able to do a few more things before having to stop. I stare at two computer screens all day at work and didn't think the double vision would work out too well for me. I am planning to try it next Monday.

As for the thymectomy, I was shocked when the Dr came in and asked me to leave. My primary surgeon had told me I would be in for four days. His associate came into my room 24 hrs post surgery and took off the bandage then started poking around on my chest asking me to cough. She asked when I wanted to go home and I jokingly said "how about now"? Dr said she would write the discharge orders and have me out within an hour. My primary surgeon told me he was shocked when I went to see him for a follow up a week later.

You didn't have your sternum split like I did -- I'm guessing. Did they go in through the neck or the side? I had two drainage tubes in my chest for days afterwards --

I am also worried about falling down, and I wear an eyepatch when I am outside and it helps -- it gives my eyes a rest and they are stronger as a result. Also earplugs when I sleep help a lot! I wish I had them in the hospital...sometimes I look in the mirror and see a new person -- sort of like Bill the Cat from the old Bloom County comic strip.