Our daughter Kelsey had indirect revascularization surgery in 2002 in Boston and suffered a  bilateral stroke that left her unable to walk,talk and eat.Our recovery is very slow,she is still on tube feedings and learning to stand with help.We are now facing spinal fusion surgery in Nov. due to scoliosis and are scared to death of the anesthesia issue.The surgery is 5-6hrs.Has anyone undergone any other major surgeries post moya moya surgery, and were there any problems undergoing anesthesia?Help!

This is definitely not the same thing, but after my daughter's surgeries, she did get general anesthesia for a couple of hours during an MRI study, and she did OK. (Daphne is only 22 months old, so she has to get anesthesia for any studies, because she doesn't know she's supposed to lie still)

My daughter had two strokes before her moyamoya surgery, so I completely understand your fear.  Everytime my daughter has any type of sedation or medical procedure, I worry about a stroke.

I think it would be a good idea to find out who is doing the anesthesia, and to make sure that they know the issues with Moyamoya  --- mainly, keeping the blood pressure within a certain range.  If the surgeon is aware of your daughter's issues, he may be able to request an anesthesiologist who is experienced and has a good reputation.

Good luck with the surgery.  Kelsey will be in my prayers.

Jenny

I, too, have had several surgeries years later after my indirect bypass by dr. scott.  I've always discussed with the anesthesiologist my medical condition prior to the day of surgery RE: CO2 levels, no hyperventilation, and BP regulation.  Luckily, there were no problems...and my breathing was regulated by the venilator both times.

Just wondering, aside from the concern regarding the anesthesia, did anyone have any problems with their "blood thinning" medications (i.e. aspirin, Aggrenox, Plavix) to prevent excessive bleeding during the surgery?  Is it safe to stop taking these meds for the surgery/operation?  I'm just wondering because it seems that ever since my double bypass (STA-MCAs), my other doctor's think twice about procedures that may require me to stop/alter my medications for my MM.

Please let me know...

Thanks,
Shan

Shan,   Before my 2nd heart bypass operation, I was in the hospital for 1 1/2 weeks taking lovenox shots to really thin my blood because of continued heart problems, as well as taking plavix.  I lost so much blood during a regular mentrual cycle that I needed 2 transfusions.  Three days later I had my 5-way heart bypass.  I ( I mean my blood) was truly a mess!!  I think that anesthesiologists adapt their medications based on individual blood tests.  I know Teresa (Dr. Steinberg) told me not to go off aspirin before sta-mca surgeries.    (Back in 1998, before my first mm surgery, I took myself off aspirin therapy for a few days by listening to "normal" pre-operation advice.  My mm "blips"  came on strong, I called Teresa, & went back on aspirin therapy that day.) This past spring, I had a colonoscopy & e-mailed Teresa again.  Since it was going on 8 years since mm surgeries & I haven't had any major problems, she said I could go off aspirin therapy for 2 weeks. 

It still worries me every time I'm faced with the surgery situation, though.  I trust my surgeons, working hand in hand with mm specialists & anesthesiologists will do the best they can.  Good luck!  deb

Thank you for sharing your experiences and insight to my question....  I know that our medications play a factor when deciding/preparing for other procedures or surgeries.

Renee:  I'm also now taking only 81 mg of aspirin.  Initially I was on 325 mg, plus Plavix, Persantine and Plavix.  It was then that I had a 4 1/2 hr nose bleed which is understandable.  I had just a little scratch and to finally go and have it catorized to stop bleeding...I could just imagine the danger I would've been in if I had a bigger cut or underwent a procedure...

Deb:  You are truly a survivor!  I too am under the care of a cardiologist.  I've had a handful of treadmill/thallium tests and one angiogram for my heart.  Before I could have my double STA-MCAs for MM, I had to obtain a clearance from cardiology to show that my   could withstand the surgery.  Ironic you mentioned colonoscopy.  That's what my dr. was thinking of doing since it's been 5 years since my last one.  Instead, he ordered a CT w/dye which came out normal and increased my Omerprazole which seems to be helping.  He believes I have an ulcer from all of the medications I'm taking....not to mention all the asprin.
Blessings to you for all that you've been through!!

Moira: Wow....Looks like you're doing great after your surgery.  I haven't read before that anyone was able to stop taking medications (even after a year) after their MM surgery.  You must be doing awesome!  Amen!  ;

Thanks again for your replies...I truly appreciate it. 

Take care,
Shan

Dr. Steinberg took Mandy off of Lovenox injections and asprin a week before her surgerys.