Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
So, I finally have all my ducks in a row and barring any unforseeable delays I will be "minus my thymus" on 7/8/14. I will also be having my thyroid out at the same time, just to keep things interesting. I am having it done in NYC by what I read is the "best in the business" and just a great guy, along with his partner in neck surgery doing my thyroid. There is a part of me that is looking forward to putting this behind me, a part of me thats scared to death and another part that it just sick of thinking about it. In the end, it is what it is and this will be my course of treatment for now. Other paths have not been workable, so maybe this small thymoma is at the heart of the problem. Its been there now since at least February when it was discovered, so perhaps its the been the culprit all along. I have had many roadblocks to getting to the point of surgery, which almost made it like a goal to get here and now that I am here, I am not so sure this was a fun goal, like saving for a trip to disney.
So, as I take this leap of faith, and believe me I feel like its a leap of faith since it is the very LAST thing Iwant to do next week, can anyone share their experience with a robotic thymecotmy with me?? I have been told I can return to work in 2 weeks, but then its always followed up with.. a "but we will see how you make out" kind of answer. Getting back to work is of course, a priority but only as a 'part' of my life, its my kids and family adventures that I miss the most. The random trips to the grocery store. The fact that I want to do even the smallest things but save my energies for what I know I MUST DO.. that part is all encompassing and has taken over my life. So I go into this hopeful that I can just live and not "plan" every use of every bit of energy,not plan when my sight will be good enough to drive and when it may not, plan when i can take my litttle guy for ice cream. Its the little things you miss the most. My doctor actually used the word "cure" in a sentence last week.. that gave me hope.
Lastly, thank you to everyone who talked/supported and worked wtih me through the early stages of this disease. Yes, it gets easier, I don't cry everyday anymore, but its still awful. My hope is that I can move on from this very unproductive stage and somehow be a support to those just being diagnosed as they navigate through uncharterd waters that are unique to us all but share some common enough ground that we can share and learn from eachother.
A few more days of IVIG (I HATE SITTING THRU IVIG), A few days of family time and then we "do it"... finally...
Thanks for everything!!
Maureen
So, as I take this leap of faith, and believe me I feel like its a leap of faith since it is the very LAST thing Iwant to do next week, can anyone share their experience with a robotic thymecotmy with me?? I have been told I can return to work in 2 weeks, but then its always followed up with.. a "but we will see how you make out" kind of answer. Getting back to work is of course, a priority but only as a 'part' of my life, its my kids and family adventures that I miss the most. The random trips to the grocery store. The fact that I want to do even the smallest things but save my energies for what I know I MUST DO.. that part is all encompassing and has taken over my life. So I go into this hopeful that I can just live and not "plan" every use of every bit of energy,not plan when my sight will be good enough to drive and when it may not, plan when i can take my litttle guy for ice cream. Its the little things you miss the most. My doctor actually used the word "cure" in a sentence last week.. that gave me hope.
Lastly, thank you to everyone who talked/supported and worked wtih me through the early stages of this disease. Yes, it gets easier, I don't cry everyday anymore, but its still awful. My hope is that I can move on from this very unproductive stage and somehow be a support to those just being diagnosed as they navigate through uncharterd waters that are unique to us all but share some common enough ground that we can share and learn from eachother.
A few more days of IVIG (I HATE SITTING THRU IVIG), A few days of family time and then we "do it"... finally...
Thanks for everything!!
Maureen
I had trans sternal surgery, so I don't know anything about robotics. But I do remember the anxiety I felt before surgery. After a few sleepless nights, I decided I had done my homework, Trusted that my surgeon and the hospital was totally competent and that it would all be ok. And it was. Try to get as much rest before surgery. After surgery, remember to take it slow, let your family and friends take care of you.
I will be thinking of you on July 8 and sending you healing thoughts!
Judith
Having all the Ducks lined up is awesome so now just stay " healthy " between now and July 8th. There is a lot of hope for you and good things to come as for me personally the thymectomy exceeded my expectations for fewer meds , smaller dosages and ultimately "remission " the adjective we all hope for and I'm currently in.
So there is hope and before you know it your body will be the " object in motion that stays in motion " and all those items on your to do list etc you WILL slowly and patiently be able to accomplish.
You've got a good plan with your Docs so stay focused and before you know it this will be behind you and you'll be post opp patient.
Cj
I was shocked at how easy it went when I had it done.
Take care
Ann
If there's been one benefit of having this meningitis and the crisis that it caused (that's what neuro thinks happened: IVIG gave me meningitis and meningitis gave me the myasthenic crisis) it's that it's taken my mind off the surgery itself. I'm just getting over one mountain at a time.
Hugs to you, Maureen! I'll be sending good vibes to you on our shared thymectomy date. :)
Annette