[lolligrump]

I had a Thymectomy 4 weeks ago today, and for the most part, I am doing fine. The tumor was benign and I have been released from my surgeons care.

Here's the problem: My vision was a real problem before the surgery, (seeing double almost all the time), but right after surgery, I could see great! Now at 4 weeks out, I am noticing that my vision, (although not seeing double), is more like my eyes sometimes aren't working together. I called my neurologist and he wanted me to up my dose of the Pyridostigmine from 1/2 of a 60MG tablet with breakfast and lunch, to a whole table with all three meals. I have read online at several sites that taking too much of this medicine can make the symptoms worse? So, I'm not taking any of the medicine today, and so far I can see well. Does anyone else have experience with taking less or NO medicine and doing better after this kind of surgery? I actually have an appointment tomorrow with a neurologist ophthalmologist to rule out that my eyes aren't just needing some kind of adjustment, via my glasses, etc.

[AnnieB3]

Hi. I'm glad the surgery went well and that you don't have a malignant tumor.

Are you on Mestinon only or some other medications for MG? Any other meds for anything else?

What you describe, your eyes not "working together," is what happens in MG. There are a lot of muscles around the eyes and if they get weak to varying degrees, the muscles don't focus both eyes in the same way. That results in blurry or double vision. Is it better when you close one eye?

Do you feel dizzy or have any other symptoms?

It's possible that your MG is better. Did you have Acetylcholine antibodies? Have they rechecked them since surgery?

You have to let the experts figure this out. I hope that you will also see your neuro and talk about all this. They can't really tell how someone with MG is doing over the phone!

It would help to write down your symptoms and when they happen too. If you do get weaker, maybe you can take a smaller dose of Mestinon and see what happens. That way, you can figure out if it's the disease or the drug that is making your MG worse.

I hope you can figure all this out. It would be great if the thymectomy helped make you better. Still don't overdo things because the disease may get better but it doesn't disappear.

Annie

[lolligrump]

Originally Posted by AnnieB3

Hi. I'm glad the surgery went well and that you don't have a malignant tumor.

Are you on Mestinon only or some other medications for MG? Any other meds for anything else?

What you describe, your eyes not "working together," is what happens in MG. There are a lot of muscles around the eyes and if they get weak to varying degrees, the muscles don't focus both eyes in the same way. That results in blurry or double vision. Is it better when you close one eye?
Do you feel dizzy or have any other symptoms?

It's possible that your MG is better. Did you have Acetylcholine antibodies? Have they rechecked them since surgery?

You have to let the experts figure this out. I hope that you will also see your neuro and talk about all this. They can't really tell how someone with MG is doing over the phone!

It would help to write down your symptoms and when they happen too. If you do get weaker, maybe you can take a smaller dose of Mestinon and see what happens. That way, you can figure out if it's the disease or the drug that is making your MG worse.

I hope you can figure all this out. It would be great if the thymectomy helped make you better. Still don't overdo things because the disease may get better but it doesn't disappear.

Annie

I am only taking the generic Mestinon.

Definitely was better when I close one eye, as it was before the surgery. Now that I'm off the medicine, it doesn't seem as necessary.

I have been slightly dizzy, but don't seem to be now that I'm off the medicine.

Acetylcholine antibodies? I'm not sure about this question. Would this have been something given at the time of surgery or in the immediate aftercare? I'm not aware of anything other than the Mestinon.

I'm a little frustrated right now with the whole neuro and the office procedures. They are a big group and I don't have much contact with my actual neuro, except through his nurse and her giving him messages when I call. She calls me back with instructions. I do have an appointment at the end of the month, before I go back to work, but it's with his FNP - My neuro isn't available until the middle of January. Although I was told I could ask for him to stop in during my appointment for a moment or two.

I am keeping a medical journal. I decided to go for with not taking the medicine, and then back to say, 1/2 tab if I see any other symptoms. I pretty much only noticed the double vision before surgery, and was only made aware that I had some muscle weakness after the neuro testing that was done for my diagnosis. So, I'm not real tuned to those or other symptoms, but might be now without the medication. I plan on telling the neuro ophthalmologist tomorrow about all this and I'm sure it will get back to my neuro and I can talk with the FNP at my next appointment. Will certain start taking the medication again if I have any kind of trouble. Have to say it's such a joy to be able to type this and see!

I think I have been under the impression that if your symptoms were mostly with your eyes, that having the Thymus removed might just fix you up for good. I'm obviously leaning towards that! Thanks for your support and thoughtful comments and suggestions. I really appreciate it! Will keep you posted. As i think we all know, it's a long journey

[AnnieB3]

The Acetycholine Receptor Antibody test is one of two basic MG tests, not treatments. It includes binding, modulating and blocking antibodies. Did no one do that test for you? What about the MuSK Antibody test? The fact that you don't know that makes me wonder about the care you are getting. That's the least a doctor can do to test you for MG.

Ocular MG can progress to generalized MG. There's no way to predict if or when that might happen. A thymectomy might help but, again, it's not a done deal to keep MG from progressing. So stay aware of how your muscles are doing!

You have the RIGHT to sit down with your neurologist to go over your situation. I hate when they act like they can't be bothered. I feel like saying, "I can't be bothered to pay your bill either."

I hope you don't get worse. I wish we would all get better.

Annie

[Juanitad]

One thing that may have made you feel better right after the surgery was IV steriods they gave you during surgery - they last for about 3-4 weeks and then wear off.

I did the same thing after my thymectomy - I felt great even though I was in ICU - could breathe the best I had in several months. When I commented about it to the nurse, she kinda laughed and said it was due to the IV steriod (can't remember the name). She was right - I went back to my "normal" self after about 3 weeks!

Hang in there!

[lolligrump]

Originally Posted by AnnieB3

The Acetycholine Receptor Antibody test is one of two basic MG tests, not treatments. It includes binding, modulating and blocking antibodies. Did no one do that test for you? What about the MuSK Antibody test? The fact that you don't know that makes me wonder about the care you are getting. That's the least a doctor can do to test you for MG.

Ocular MG can progress to generalized MG. There's no way to predict if or when that might happen. A thymectomy might help but, again, it's not a done deal to keep MG from progressing. So stay aware of how your muscles are doing!

You have the RIGHT to sit down with your neurologist to go over your situation. I hate when they act like they can't be bothered. I feel like saying, "I can't be bothered to pay your bill either."

I hope you don't get worse. I wish we would all get better.

Annie

I had a blood test for MG when I first started showing the drooping eye and when that came back positive, I had the resistance test done by the neurologist - Where he pushed down on my arms and legs and had me resist. After several repetitions showed muscle weakness, and confirming the drooping eyelid, he agreed that the blood test was right, which led them to send me to get an MRI, that showed the Thymus with a tumor. I then got a chest X-ray and had surgery. After surgery another chest X-Ray, before I was released from the hospital. One week home and I ended up with a CAT SCAN which showed I had a small lung infection. That cleared up after two rounds of antibiotics.

Now I just have the vision problem where by eyes are not always aligned correctly. This is a new development but after seeing the neuro ophthalmologist on Friday, she thinks I might be having complications from Lazy Eye surgery that was done some 20 years ago. One theory is that I had MG even back then, and now after the Thymectomy, the results of that Lazy Eye surgery, (which tightened up my eye muscle), may now be too much of a correction.

Will wait a bit and see if things straighten out before I consider surgery to help my eyes align better. My eyes are much better without the medicine. Don't notice any other weaknesses. As I think I mentioned before, I will meet with the assistant to my neuro at the end of the month, and I will be asking lots of questions, and also requesting to see my actual neuro at that time. I would like to have a complete workup again, and I will ask about the
Acetycholine Receptor Antibody test, as I would like to know if I am in remission or perhaps cured. Won't that be wonderful?

[lolligrump]

Originally Posted by Juanitad

Hang in there!

Thanks! I will indeed!

[djvallejo]

My husband had his thymectomy 1 yr ago. Like you, he mostly had vision problems prior to surgery (droopy lids & DV) and was taking only mestinon. His surgeon told us that sometimes surgery can cause the antibodies to release into his system causing his MG to worsen before it got better & that was definitely the case with him. His vision was great for about 4-8 wks (due to the plasma transfers prior to & after surgery) and then we saw it get bad again along with other, generalized symptoms appearing. It got a little scary so we went to his neuro who recommended plasmapheris which was done in April. We opted against any pred, cellcept or imuran for now - don't really like meds and the side-effects that go with them. He had alot of improvement from the plasma transfer, but eye issues continued with some relief. He also has quite a bit of jaw strength issues that did not improve much. Last month he had 3 rounds of IVIG to see if he could get some vision & jaw improvement (other symptoms are still manageable) but saw little improvement. He has an appt next month with his neuro to see what we should try next. All in all, he is MUCH better 1 yr post-op but it is still very frustrating living with this crazy disease and the limitations that come with it.

I'm with Annie - you have every right to see your neuro not just the FNP. We have a standing appt to see my husband's every 3 mos and when he was having so much difficulty this past spring, I got him it within a week. Normally it takes 4 wks to get an appt. Keep pushing for what you need! I hope hearing someone else's story helps you. Good luck on your journey through this craziness! Alison

[lolligrump]

Originally Posted by djvallejo

My husband had his thymectomy 1 yr ago. Like you, he mostly had vision problems prior to surgery (droopy lids & DV) and was taking only mestinon. His surgeon told us that sometimes surgery can cause the antibodies to release into his system causing his MG to worsen before it got better & that was definitely the case with him. His vision was great for about 4-8 wks (due to the plasma transfers prior to & after surgery) and then we saw it get bad again along with other, generalized symptoms appearing. It got a little scary so we went to his neuro who recommended plasmapheris which was done in April. We opted against any pred, cellcept or imuran for now - don't really like meds and the side-effects that go with them. He had alot of improvement from the plasma transfer, but eye issues continued with some relief. He also has quite a bit of jaw strength issues that did not improve much. Last month he had 3 rounds of IVIG to see if he could get some vision & jaw improvement (other symptoms are still manageable) but saw little improvement. He has an appt next month with his neuro to see what we should try next. All in all, he is MUCH better 1 yr post-op but it is still very frustrating living with this crazy disease and the limitations that come with it.

I'm with Annie - you have every right to see your neuro not just the FNP. We have a standing appt to see my husband's every 3 mos and when he was having so much difficulty this past spring, I got him it within a week. Normally it takes 4 wks to get an appt. Keep pushing for what you need! I hope hearing someone else's story helps you. Good luck on your journey through this craziness! Alison

I wish your husband well and yes, the journey is indeed crazy!

[AnnieB3]

Lolligrump, Do you have an informal name?

Well, amblyopia/lazy eye is not a disease in and of itself. There's usually a CAUSE like strasbismus or ptosis. I was diagnosed at age ten with lazy eye. NOT an accurate diagnosis. I never had surgery because lazy eye is supposedly permanent by age 10. I had glasses, which didn't help my undiagnosed MG.

It probably is still the MG causing the focus issues. I hope you don't have any more issues with MG.

Alison, I'm glad your husband is better.