I've read that some of you had to have surgeries on both sides.  I'm really worried that I may soon have join you.  I had a DOUBLE BY-PASS on my right side on May 27th, 2005 at WakeMed in North Carolina and am still recovering, so the thought of another surgery is unbearable to even think of.  I'm still swollen, and last week's MRI/MRA still showed blood in the area.  I'm also still getting minor symptoms like I did before my surgery...Is this normal?  

What scares me is that it feels like I'm getting the same symptoms except now on my the opposite side.  Now my right side corner of my mouth and sometimes my hands/fingers have a "tingling" sensation that my left side did.  My left side started off with my upper left lip getting numb, then the bottom, then tongue, then both upper/lower left lip..then spreading to my cheeks.  It wasn't until it spread to my cheeks that I sought my THIRD opinion and was diagnosed with MM.

How long does one usually have to wait to have the second surgery?  Can it be done even if the first one isn't healed?

Please give me some insight if you have experienced this...

I'm hoping it's just my imagination....but I also don't want to be in denial...

Take care,
SFH

Hi Shan,
My thoughts are really with you at this time. I have had STA MCA bypasses to both sides within 6 months of each other and have not experienced symptoms since - only had a few problems after each surgery due to it all settling down. Did you have STA-MCA bypasses done or just normal bypasses?
Moira

Hi Shan,

I did have numbness on my left hand sometime after the surgery, which was on the right side of my brain. Then I did not feel any  numbness for a while  but yesterday morning, the numbness appeared on my right hand. It worries me a lot, too about the possibility of another surgery on my left side. The angiogram test I took before showed I have some moyamoya vessels on the left, but still no occlusion yet. I think that I will wait until the follow-up angiogram to know what to do next.

I don't have any experience about the second surgery but  Rene, another  moyamoya patient who had the second  surgery as the same time with mine had her first one just a week earlier.

Take care and my thoughts are with you.

Ha

Hi Shan,

To answer your question about a second surgery before recovery from the first - YES!  Dr. Steinberg at Stanford tends to do surgeries on his patients just a week apart.  My daughter was one of them and had her surgeries a year ago at age 17.  Since then I've met at least 10 MM patients who have had surgeries a week apart (the youngest was Jenny's daughter, Daphne, who was 17 months old).

I wouldn't jump to conclusions, but you definitely want to be on the safe side.  My personal advice is to have it looked into.  The time it takes for the MM to go to the other side varies from patient to patient, so that part of it is impossible to say with certainty.  And, I can understand the dread of another surgery, but . . . it's better than the alternative, right?

Please keep us posted as you can.  I'll be thinking of you and sending up a prayer!

Jill

 

Hi Shan -

Dr. Scott did my surgeries a week apart as well.  I know what you mean about the dread of another surgery.  
I remember about 2 days into my recovery from my first surgery I thought - this is too much - no way can I go through another round!  But everyone told me - it's better to just get it over with.  Jill is right - better than the alternative!  Hang in there, Shan!  

-Shari

Hi Shan:

It sounds like you are on top of things and it's a really good thing that you ca verbalize how you feel. My son, Brian, had 3 STA-MCA's doen by Dr. Steinberg in a 3 1/2 week period. He did amazingly well and almost 5 years later, never ceases to amaze me. Feel free to e-mail me at kathyvanmeter@cox.net if you'd like to talk.

Thoughts and prayers.................Kathy

Wow.  Thanks for all your replies.  I know if a second surgery is needed, then I will definitely have it done. It's just the thought of it when I am still hurting from the first one that makes me cringe!  My HEART goes out to all of you that have had both sides done!...especially a week apart, or in Kathy's son's case..3 surgeries in 3 1/2 weeks!  Oh my!  God bless!

Well...I called my neuro today, and he thinks my new symptoms may be from the Topomax (25 mg) he started me on.  He said to "drink lots of fluids" and monitor the symptoms.  I know, I know, you've all heard that before.  

I'll keep you updated.  You all play a BIG part in the success of my recovery by your kind words, advice and most importantly...by sharing your personal experiences.  I truly appreciate it!!!!  ;)

Take care,
SFH