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...

1,709 Members
7,414 Posts
0 Online
Muscles & Bones
/ Myasthenia Gravis Support Group

Thymectomy Anxiety

Rankin
Rankin
Hi Everyone,

I need the group's best cheerleaders to talk me off the ledge. My teenage son is scheduled for a trans-sternal thymectomy on July 18. All other methods of treatment aren't working on his double vision and his neuro wants him to have this done before school starts up. We received a second opinion about treatment and this procedure seems to be next on the list. Being a mom just got harder.

Thanks for your support. I love this group. Don't know what I'd do without you.

Best,
Maureen
Cj416
Cj416
Hi Maureen ,

Anxiety is perfectly normal emotion as we know you want nothing but the best for your son. As a matter of fact I'd be concerned lol if you didn't have anxiety so having said that without a doubt the thymectomy is the next logical step to take.

Your surgeon and neuro are on the same page and he's got your support and the fact being he's young are all positives leading up to surgery. I'm a big advocate of this surgery and I'm no Doctor but the pros out number the cons in my opinion besides he's going to get an opportunity for less severe symptoms and potentially remission .

As far as a Mom , keep doing what your doing support , love goes a long way as many here will tell you and the fact that YOUR here says so much.

Cj
carolela
carolela
Best to your son! Thymectomy sounds like the best choice. Stay strong, we are here for you and your son!
annkemp
annkemp
It really is easier than I expected.
I certainly hope you did try no technology for a day.
I was out of hospital in 2 days.
Ann
deleted_user
deleted_user
Im sending prayers and good wishes to your son..he will do fine and agree with rest thymectomy especially at his age is the best choice for his recovery and heres hoping for remission!! With your wonderful support and we are ALL here for ya he will be aok..CJ is right anxiety is all part of it..Between neuro and surgeon on same page and all in place it will go great..Hugs and best wishes coming your way..Keep us posted...! BIG HUGS
Tim62
Tim62
Wishing your son, and you all the best during this time. For my double vision, I went to an acupuncturist. She was born in Taiwan, trained there etc. She put needles around the eye area, attached small electrical leads for stim. After the first treatment my double vision went away for ten minutes, after the second, for an hour. After the sixth treatment it was pretty much cured. I believe I am the only person on this site that tried this. Sending calming thoughts your way.
DEEW4
DEEW4
Send a private message to Seattle Writer. She is getting out of hospital today or tomorrow after Thymectomy on Tuesday.
Maureen from NY is having surgery this week or next.
The best to all. Prayers going up.
I am a little jealous. I was told I am too old to have the surgery (72) However, if I ever need heart surgery they would do then.. Since my heart seems to be the only thing working in my body, no surgery for Dee
sharonmartin
sharonmartin
you've got the worlds authority on MG----in a wonderful hospital----bet ya got best surgeon-----but nothing in the world can stop a mom from worrying about her child----best of luck to your son for a speedy recovery-----and don't forget he may go into complete remission---may take awhile but complete remission is real possibility!!!!!!!!!! huggables sharon
SeattleWriter
SeattleWriter
Feel free to ask me anything you'd like-- I'm recovering from the surgery right now, so it's all fresh for me. I'm not as young as your son, but at 31, I'm at least closei-sh.
annkemp
annkemp
Even if the other treatment are helping you will glad this is done when it is over.
I was really quite shocked t how well and smooth this procedure is.
Recovery does take longer than I had hoped but it heals as they predicted.
MaureenNY
MaureenNY
They aren't interested. In doing it robotically? I'm sure it's been discussed, but after much research and meeting with some surgeons I couldn't come up with a good reason not to take the easy way out and have less of an incision.

Maureen
cgreens
cgreens
When you say all other methods of treatment, what do you mean? Has your son had IVIG for fast relief?

What else?
Prednisone, Cellcept, Imuran, Rituxan?

Best wishes,
TJ
Rankin
Rankin
50 mg of Prednisone, Cellcept, Mestonin, eight plasmapheresis treatments, and five IVIG treatments.
Bamboolilly
Bamboolilly
When you are younger the surgery is easier. I had transsternal too, and because I had a thymoma. The first couple of days in ICU they take really good care of you. Afterwards, it's a healing process. My scar is almost gone. Used Mederma cream. 2 years next month. All good. Still symptomatic, and get monthly ivig. The IVig took a while to kick in. The biggest thing is to be sure he gets his medtinon on time in the hospital.
Wellness,
annkemp
annkemp
Did he ever try to rest his eyes by not using computer and games etc?
Resting eyes always helped my double vision.