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,

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 -

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

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 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