[confused12]

Hello all...I havent been on in awhile...its been a bad few days. I went to the doc last Monday to talk about the thyectomy (that I finally decided to go ahead with). Turns out I have to go back the 13th for a scan. These past couple days have been horrible tired...weak..alot of trouble swallowing food..double vision. Symptoms have been bad. I slept almost 5 hrs yesterday and still went to bed @ 7:15 and slept all night long till 8 this morning. I wish I would have listened to the doc I went to a year ago that wanted to do the surgery then....maybe...just maybe... I would feel better now. Tomorrow is another day. Hope its a better one!!

[AnnieB3]

I'm sorry you're having a bad time. I know how much you want surgery but make sure your neuro thinks it's an okay risk, considering how bad you are. You don't want to have a crisis.

I don't know how much your surgery team knows about MG. I actually got this tip from my vet, sort of. She uses pediatric gas (Sevoflourine I think it's called) to intubate some dogs. It's easier on the system and wears off sooner. So I suggested that a doc of mine use that during a surgery I had a few years ago. They thought it was a super idea and did it for me! If it's good enough for my dog . . .

Whatever you do, I hope it goes well. Make sure you are prepared for the recovery time too. And have a good pillow around for your chest (in case you sneeze, etc.)!

I've never had a thymectomy, so I can't give you any advice other than to take as good care of yourself as you can. Including more sleep!

Annie

[ras1256]

I know it's hard to wait after all the agonizing over whether to do it or not, but as Annie said, it's important to be strong enough first. I didn't have my thymectomy until August after being dx'd in April because they had to do IVIG and meds to get my strength up. Hang in there and make sure you do get lots of rest - not just sleep but as little use of muscles as possible (I turn into a real couch potatoe when the weakness hits me). Keep us posted how you're doing. We'll be thinking of you.

[hcmiller92]

Thymecotmy is a virtually useless procedure in the treatment of MG, but a lot of docs dangle it out there for otherwise hopeless victims, telling then it may help. What scullduggery! Then there's the other issue: your condition for surgery.

Is someone nuts telling you that you are in any condition to go under the knife?! You need to be strong before surgery. I had major (they say - I say it was no worse than a scraped knee) surgery last October when my surgeon sliced open a 12" wound in my belly and ripped out my sigmoid colon. They then hung a bag on me. But, it was a major nothing because I had eliminated MG symptoms with prednisone beforehand.

Vive la prednisone!

Originally Posted by confused12

Hello all...I havent been on in awhile...its been a bad few days. I went to the doc last Monday to talk about the thyectomy (that I finally decided to go ahead with). Turns out I have to go back the 13th for a scan. These past couple days have been horrible tired...weak..alot of trouble swallowing food..double vision. Symptoms have been bad. I slept almost 5 hrs yesterday and still went to bed @ 7:15 and slept all night long till 8 this morning. I wish I would have listened to the doc I went to a year ago that wanted to do the surgery then....maybe...just maybe... I would feel better now. Tomorrow is another day. Hope its a better one!!

[confused12]

There must have been a misunderstanding...my symptoms wasnt this bad till recently...I have good days and bad days...just so happens these past few days were horrible. The surgeon isnt sure about the thyectomy until after my scan on the 13th. What I was saying is I wish I would have listened to the neuro(diffrent from the one I have now) long ago when he wanted to do the surgery, then maybe I would feel better now. Im aware it may not work for me....Im just sick and tired of being sick and tired, so Im hoping Ill benefit from it. I just keep praying....... Thanks for all the replys....they help me through all this.

[hcmiller92]

Originally Posted by confused12

There must have been a misunderstanding...my symptoms wasnt this bad till recently...I have good days and bad days...just so happens these past few days were horrible. The surgeon isnt sure about the thyectomy until after my scan on the 13th. What I was saying is I wish I would have listened to the neuro(diffrent from the one I have now) long ago when he wanted to do the surgery, then maybe I would feel better now. Im aware it may not work for me....Im just sick and tired of being sick and tired, so Im hoping Ill benefit from it. I just keep praying....... Thanks for all the replys....they help me through all this.

Confused. Thymectomy is NOT the answer. It never works, no matter what you hear here or around other forums. There may be times of coincidence between a surgery and apparent recovery, but despite whatever your neuro tells you, there is no proof. What you will have is a miserable scar from where they crack you open, and a lot of pain for many weeks.

The course of therapy that will work is high doses of prednisone (>60 mg per day), couple with long term immunosuppression (Imuran is probably best). Most neuros don't prescribe these drugs in sufficient quantities to quell the symptoms so when their patients don't improve, they always suggest thymectomy.

Neuros are full of ****. Pardon my French, but these jerks cause more suffering sometimes than they fix.

I'm an MG survivor, in spite of the ******treatment out there and I lingered near death from the disease...and you could too, if you follow bad advice, and it seems like you might be doing that.

[AnnieB3]

HCMiller, I'm sorry you have had bad experiences with neuros. I have had some fairly horrific ones too.

The choice of whether or not to have a thymectomy is very personal. No, there's no guarantee it will help. Just like there's no guarantee chemotherapy will help get rid of cancer. But that's up to the patient to choose.

I chose not to have a thymectomy for my own personal reasons. Part of it was the lack of concrete studies on whether they do any good in the short or long term. But, again, it was my choice.

Confused, HC is right about being strong for surgery. You should absolutely not go into surgery with an infection. Whatever you choose to do with your body is your choice. I'm not keen on thymectomies but I would certainly support your decision to have one!!! You've obviously thought about this and are prepared to have it done. I hope it goes well.

Annie

[hcmiller92]

Originally Posted by AnnieB3

HCMiller, I'm sorry you have had bad experiences with neuros. I have had some fairly horrific ones too.

The choice of whether or not to have a thymectomy is very personal. No, there's no guarantee it will help. Just like there's no guarantee chemotherapy will help get rid of cancer. But that's up to the patient to choose.

I chose not to have a thymectomy for my own personal reasons. Part of it was the lack of concrete studies on whether they do any good in the short or long term. But, again, it was my choice.

Confused, HC is right about being strong for surgery. You should absolutely not go into surgery with an infection. Whatever you choose to do with your body is your choice. I'm not keen on thymectomies but I would certainly support your decision to have one!!! You've obviously thought about this and are prepared to have it done. I hope it goes well.

Annie

No, Annie, thymectomy is very public. And, thymectomy is ****** and doesn't work. Simple as that. Walk in my shoes before you suggest otherwise...and study the literature. but, for God's sake, don't believe a word of anyone telling you about positive outcomes from thymectomy, vis-a-vis recovery from MG. There's just no connection.

I will cajole anyone who talks about having or having had a thymectomy for treatment of MG. Why not try snake bite next? There are religious nuts in the south who swear by it. Just as efficacious as thymectomy.

[confused12]

Now Im REALLY confused....I wish I had the answer Ive read where its helped people...and Im aware of the outcome...........looks as if Im right back where I started. One thing is for sure...Im soooo glad Ive found this site.

[AnnieB3]

Confused, Curt's opinion is one out of thousands. It's neither right nor wrong. The only correct choice is the one you have to make.

I'm afraid if I comment on this further, this might become an ugly situation. I do not want to do that to you, Confused.

I've done tons of research on thymectomies, back when I was considering it eight years ago. And I'm talking research at medical libraries dating back to when they first started doing them. I am no expert however. And I have never personally had a thymectomy.

There are studies that show if you have a thymectomy within the first year of being diagnosed, especially if you are younger, that your chances of remission increase. They are doing new studies right now that I hope will provide concrete evidence, one way or the other, whether thymectomies are useful and to whom. Remission can take years and sometimes they are not certain if it was the thymectomy or the drugs given afterwards (like Imuran).

Since there is no right or wrong answer, it's up to you to decide what you WANT to do! No one has the right to tell you what you should or shouldn't do. Discuss this again with your neurologist if you need to. Put surgery off for a bit if you need to - or go ahead with it.

Please do not let ONE opinion make your mind up for you. Mine either. It is a tough decision and you are the ONLY ONE who can make it. I wish you the very best of luck figuring it out for yourself.

Annie