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!

Kelmo,My daughter had surgery in Bosotn in April 2002.She too had a very severe stroke between surgeries. AS for other surgeries we've been lucky enough to avoid any so far.But in conversations with Dr.Scott he said his anasthesiologists could always consult with anyone local if it was ever needed. This may be one wasy to put your mind at ease(I know that's not easy when your child is facing surgery).
Mary Grace

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

Hi Kelmo,
Yes I have since undergone anaesthetic since my STA-MCA bypass surgery in 2001.
I underwent some major surgery on the 26th July (not to do with MM) and I had my anaesthetist liase with my neurosurgeon, who said that the Co2 levels had to be kept higher and no fluctuation in blood pressure at all, and I have since had a couple of minor surgeries after this operation (to put grommets in my ears and take them out again) but with these 2 procedures I was breathing on my own under anaesthetic. With the he major surgery the machine took over my breathing.
You should also check with the anaesthetist to see if Kelsey is going to be breathing on her own or if the machine is going to take over her breathing. If she is going to be breathing on her own  under anaesthetic, the brain regulates it's own Co2 levels so there is less chance of something happening.
Hope this helps
Moira

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.

Dear Kelmo,   Since my sta-mca surgeries in 1998 (I was diagnosed with mm in Aug., 1997 with a major stroke), I have had 2 major heart surgeries (a 3-way beating heart bypass which failed & a 5-way standard (stopped heart) bypass 3 months later).  Before my surgeries, I asked my surgeons to speak with Dr. Steinberg re: anesthesia, how to keep blood pressure at the optimum level during surgeries.  My 2nd bypass was 5 1/2 hours long & I did have some problems with speech & eating after. It took a couple of days to be able to eat again. After surgery, the hospital's speech, physical & occupational therapists all  were part of my recovery.  By the time I was released (5 days later), all my neurological problems (speech primarily) were much better.  

My heart goes out to you during this stressful time.  deb

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

I am only taking 81mg of aspirin/day, and for all my surgeries, I was advised to stop taking it for one week prior.  I never had any problems with this "break" from the aspirin.

Renee

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

Hi Shan (Or Aloha!!!)
I might be a different case to everyone else but after my STA MCA bypasses I was only on Aspirin for about a year or so and have not needed to take it since, but with the surgery I recently had, I was told to stop taking any medication a week before (I had had a cold a couple of weeks before and they were concerned about antibiotics and antihistimines.) I was also taking some homeopathic tablets and was told to stop this as well, but my surgery was cosmetic and I had to also stop my weight training at the gym, to limit bleeding during surgery
Moira

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   [smiley=heart.gif] 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!  ;;D

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

Take care,
Shan

Kelmo~

The only surgery i have had after MM surgery was the removal of my wisdom teeth. Not a major operation but i was put under anesthesia. My oral surgeon made sure that my MM doctors approved of my anesthesia before he would do the procedure. Everything went very well but like i said getting my wisdom teeth out is very very minor compared to what Kelsey is having done. I hope all goes very well and i will keep you and Kelsey in my thoughts and prayers!!!

Christy

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