[art chick]

I am really scared about having a thymectomy. General anesthesia freaks me out and with my new respiratory history and MG complicating things, it makes it all even potentially worse. And I am dreading the hospital: I have been in the hospital 15 days already in the last couple of months and it will be another 5-6 days with the transsternal approach that they are doing. And then 4-6 wks recovery. This has been the hardest, most exhausting year of my life. And right now I am feeling good with the IVIG so I have to go backwards to only potentially go forwards. . .

I feel like I am between a rock and a hard place. My MG is very severe so I am having IVIG every 3 weeks which is something that cannot continue indefinitely and so thymectomy seems to be the only hope. This just really sucks. Or is it that I am somehow not seeing it in the right light?

My family is not particularly thrilled with the one-third remission rates but that seems better than the "do nothing" rates. Is there another way to go about or understand this?

I think I need a pep talk, debra

[Stellatum]

Hi, Debra. I don't have any medical advice, but I can really sympathize with what you're going through! Having gone through so much uses up your strength--not just physically, but emotionally. It seems like you're expected to go through something extremely difficult exactly when you have the least resources to deal with it.

Your symptoms have been terrifying. I don't think anyone can overestimate the toll this has taken on you. Hang in there.

Abby

[KathyV]

Debra,

Do you have a surgery date set, or just anticipating?

I had my thymetomy last December. My MG is not nearly as bad as yours, but I did have a mild crisis just prior to surgery and had 4 plasma exchanges just prior to surgery. Mine was done robotically (vs. transsternal) which is minimally invasive, so my recovery was so much faster and less painful.

When they rolled me into the prep area just prior to the surgery, I doublechecked with the anestheologist to make sure he knew I had MG and that he was going to use the appropriate anasthesia (we have to be careful).

Good luck.

[ginnie]

Hi debie, I do understand your fear. I do not have what you do, but that fear of surgery, all the pain, even an IV start. It is alot to handle no matter what kind of surgery you have to do. I feel that there are others here that feel the same way we do. I have to have surgery too, I await my NS to call me. I sit worried, so I reach out to this list. Good luck to you in whatever has to be your direction. None of it is easy for sure. Ginnie

[brandonc]

I know that it can be scary but in my eyes the hope that I wont have to struggle out of bed in the morning seems a little bit much for me to pass up. Im only 20 though and i dont know if i could go on takeing 50 mg of pred, cell cept and mestinon for the rest of my life. I will be having the surgery soon too. Theyre sayin that they are gonna try to do the minimally invasive surgery but since im such a big guy ill prolly have to get cracked open and i wish that they would do it already so i can start recovering

[rezmommy]

Hi Debra,
I had my thymectomy in February 2009. It was something that was questionable to my family. It was my decision and I am glad that I did it. I am sero negative so my dr said that it was hard to predict my outcome. My dr did say that because of my age 37 at the time and being just diagnosed that my outcome could be good.
It has been a year and a half since my surgery and I am doing good. I have not been posting on this site as much because I have been feeling better and out doing more with my family. I am taking Imuran, Mestinon and I have IVIG once a month. It is hard to say what exactly is working at this time. I am not going to question it though. I am going to enjoy it.
I hope that you get to a good place before your surgery. It is a BIG decision that only you can make. I get to look at the reminder on my chest every day but it's a small thing to live with.
Take care Melanie

[AnnieB3]

Debra, It is a scary thought to have major surgery when you've just had so many close calls. Do they think you are stable enough now for surgery? That would be a big consideration. You went downhill pretty fast before. And it is a big recovery, not that I would know anything about it since they wouldn't do it on me (too many other issues).

You know the deal, it's a roll the dice kind of thing with thymectomy. The research is all over the place as to whether or not it increases the remission rates or if it's a thymectomy in combo with immunosuppressants that does it. Antibodies are not only "created" by the thymectomy. The immune system is a complicated issue. There are many who believe keeping your GI tract/mucosa healthy makes your immune system healthy. I tend to agree with that, in theory.

If you think that the surgery will do you no real harm and that it "may" give you a higher chance of remission, then you'll have to decide if it's worth that chance. You can read all the studies but it really comes down to whether you can physically handle it and what kind of risks you want to take.

I hope you can figure it all out. And I'm sorry your last IVIG was so bad.

Annie

[kimp]

Hi Debra,
I was diagnosed with Thymoma in March 2007 and had the thymectomy but was also tested for myasthenia gravis then also but was never told that I was positive for mg. Four years later started having issues with legs dragging eyelid not working then double and blurred vision where I couldn't walk or drive. I have a recurrent thymoma it took them 3mos to figure out what kind of tumor I had this time. Because recurrent thymoma's are not common. Know I am going for chemo and that will end in December (hopefully). I know you will be all right do what your heart feels but think very carefully.
Good Luck Kimp

[art chick]

Thanks for the support everyone!!

Abby-you are so right. . .you found the words to say exactly how I am feeling, thank you. . .

Kathy-I will find out the surgery date probably this week. I have been having a lot of side effects w/ IVIG and I did again this week and that is probably going to change the schedule again. I am down to 20mg pred and the surgeon said she could operate on 10 or less but I will probably push for 5 or less. . .so 4-6 wks??

Virginia-good luck with your surgery. . .and yes, the IV's! They had to stick me 9 times this week for 5 iv's and keep asking why I don't have a port. On pred, I think they just can't do that since you can't heal anything. . ..

Brandon-wow, being so young, I can understand why you are in a hurry to move on with your life and get the surgery done. This is going to be my 4th surgery.

Melanie-It is so great to hear that you are having a better time of it after surgery! That gives me hope : )

Annie-I am doing really great now and am stable enough for surgery. I have a really great team of experts on the case and I feel well taken care of for the first time in my life. Because my MG is so severe, the surgery really is a huge hope in my case to turn things around.

Kimp--sorry for your struggle. That is really awful you didn't know that you had MG. I was undiagnosed for 4 1/2 years and I couldn't walk and was in a wheelchair for 2 1/2 months at one point. I know how brutal this whole diagnosis situation can be and I hope your treatment and recovery go smoothly.

debra

[teresakoch]

Can't help with any surgery answers, but you and your family will be in our family's thoughts and prayers. If you need anything, please let us know!