[erkaderka]

hello all,
my name is erica, im 29, diagnosed with mg in july this yr and seeking advice on thymectomy. i've done as much research as a person can on the internet, spoken with a surgeon, my neurologist says its my best option for a chance at full remission (eventually). i've been reading posts and i kinda feel a bit guilty..I have acute generalized mg, over the summer my eyes, legs and both arms were weak, but it mostly effects my right arm and eyes constantly.
i can't see straight past 3 ft in front of me and i can barely lift my arm to brush my hair or open a cabinet. i work in a hospital lab, in the microbiology department as well so i refused immunosuppressant therapy, and no steroids. reading up on those drugs-i just can't deal with any more drug side-effects i take meds for bipolar and fibromyalgia and muscle spasms. i take mestinon as well. it works,then stops working. i take 60 2x's in the morning and 4 more every 3 or 4 hrs after-6 total. when i'm feeling better i take less. then sometimes its out of control and mestinon does nothing at all. i did IVIG in november and the 3rd day got a massive brain/headache so my neurologist told me to stop. i noticed a difference, then decline and the talks about thymectomy came around. they scheduled me 2 wks later and i freaked out and cancelled. I cant live like this though, im a single mom, i work full time... is acute generalized a good candidate for the surgery? i wish i could talk with someone who's gone through it and knows if it's worth it. -conflicted

[Brennan068]

Hi Erica,

Welcome to our little group.

I had a thymectomy but it was because of a tumour. Some of my MG symptoms were reduced almost immediately after the thymectomy, others took a while to show improvemnt. However, some symptoms continue to persist 4 years after.

When looking at a thymectomy for MG, you need to know that it is not a 100% cure. The question about if it is a good candidate doesn't come to what muscles are affected by the MG, it is what the Thymus is doing. If it is hyperplastic then there is a good chance the thymectomy will reduce your symptoms. There is also some evidence that there is a condition where the Thymus as a whole is not hyperplastic (CT scan doesn't show it as being hyperplastic) but enough thymus cells are that the thymectomy will help. From what I've read, it is also more successful if the patient is AchR positive .... but I've not read a lot that calls a distinction to which antibodies you're producing and success of the thymectomy.

Regarding your IVIG, I understand that the headache that comes with it can be helped by adjusting the speed that they do it... ask them to slow it down.

I hope you find the answers you're looking for and relief from your symptoms.

Cheers,

Brian

[wbdolphin]

One year ago this week I had a trans-sternal thymectomy. At the time all I had was 6 weeks of ptosis (eyelid drooping). Within 10-14 days of the thymectomy the ptosis was gone. I stopped taking mestinon about a month later and have been symptom free ever since. I have heard that if a thymectomy is done shortly after symptoms appear the chances of "remission" are better.
Every pain, painpill, every sleepless night recovering from the thymectomy was worth it if it meant going into remission.

[Southern Bell]

I also want to welcome you to this group. I've found it to be very informative and supportive.

I had a thymectomy in 2009. Had no choice because the thymus turmor was so large that it was attached to lung sack and heart sack. Usually when a turmor is that large it is malignant. Luckily mine was not although they wanted to start giving me radiation treatment right after surgery. Another story.

I saw no improvement from the surgery maybe because I have been diagnosed with both MG and Stiff Person Symptom. In fact my symptoms became worse. But it was worth getting the turmor out of my body before it caused more serious problems - like cancer.

Good luck on your decision. Sounds like you are doing a lot of research which is good. I had no idea what my problems was because I was in the ER 12 days after my symptoms started. My internest thought I had the symptoms of MS.

Please keep us updated.

Southern Bell

[erkaderka]

Originally Posted by Brennan068

Hi Erica,

Welcome to our little group.

I had a thymectomy but it was because of a tumour. Some of my MG symptoms were reduced almost immediately after the thymectomy, others took a while to show improvemnt. However, some symptoms continue to persist 4 years after.

When looking at a thymectomy for MG, you need to know that it is not a 100% cure. The question about if it is a good candidate doesn't come to what muscles are affected by the MG, it is what the Thymus is doing. If it is hyperplastic then there is a good chance the thymectomy will reduce your symptoms. There is also some evidence that there is a condition where the Thymus as a whole is not hyperplastic (CT scan doesn't show it as being hyperplastic) but enough thymus cells are that the thymectomy will help. From what I've read, it is also more successful if the patient is AchR positive .... but I've not read a lot that calls a distinction to which antibodies you're producing and success of the thymectomy.

Regarding your IVIG, I understand that the headache that comes with it can be helped by adjusting the speed that they do it... ask them to slow it down.

I hope you find the answers you're looking for and relief from your symptoms.

Cheers,

Brian

thank you brian! i am Achr positive, and the doc put me on for 2 days of IG instead of 4... today was my 2nd day and i can see straight and feel strength back in my arm a bit. i think i'd like to try the thymectomy. what have i got to lose!

erica

[erkaderka]

Originally Posted by wbdolphin

One year ago this week I had a trans-sternal thymectomy. At the time all I had was 6 weeks of ptosis (eyelid drooping). Within 10-14 days of the thymectomy the ptosis was gone. I stopped taking mestinon about a month later and have been symptom free ever since. I have heard that if a thymectomy is done shortly after symptoms appear the chances of "remission" are better.
Every pain, painpill, every sleepless night recovering from the thymectomy was worth it if it meant going into remission.

Really?! oh i've been waiting to hear something positive. it's a scary decision and i'm hitting a year now since symtoms began so i will not delay!
thank you
~erica

[erkaderka]

Originally Posted by Southern Bell

I also want to welcome you to this group. I've found it to be very informative and supportive.

I had a thymectomy in 2009. Had no choice because the thymus turmor was so large that it was attached to lung sack and heart sack. Usually when a turmor is that large it is malignant. Luckily mine was not although they wanted to start giving me radiation treatment right after surgery. Another story.

I saw no improvement from the surgery maybe because I have been diagnosed with both MG and Stiff Person Symptom. In fact my symptoms became worse. But it was worth getting the turmor out of my body before it caused more serious problems - like cancer.

Good luck on your decision. Sounds like you are doing a lot of research which is good. I had no idea what my problems was because I was in the ER 12 days after my symptoms started. My internest thought I had the symptoms of MS.

Please keep us updated.

Southern Bell

i don't have a tumor thankfully, i'm going to go for it. right now its hitting a year so what do have to lose (besides a thymus)
thank you~erica