Has anyone had problems with mm and anestesia? My daughter had two procedures done that required her to be put under and after both procedures she had a stroke after. Just curious if there was anyone else out there with similar experience and what they have heard about it. she is supposed to have an angiogram done as well as another surgery and I am apprehensive about putting her under again.

My son has not had any issues with being put to sleep but I do know that anesthesia reduces blood flow to the brain so in people with moyamoya who already have restricted blood flow it can create problems. Anesthesia is a BIG concern for people with MMD.

I agree with Shari and Erinmom2 that anesthesia is a big concern for those of us who have mm. I have to go to our local hospital instead of the clinic where they do colonascopy or gastroenterology tests because they are concerned about anesthesia. I am lucky to have them.

As others have mentioned, anesthesia is a concern for those with MM.  My daughter's neurosurgeon stressed to me the importance of anyone who administers anesthesia to my child being trained in  moyamoya precautions for anesthesia.  Technically, I don't understand all aspects of the precautions, so in the past I have referred anesthesiologists to the neurosurgeon when they don't "get it", and have opted not to proceed with procedures until I'm satisfied that the anesthesiologist understands the importance.  If s/he is not willing to talk to my daughter's neurosurgeon about this (if they don't understand it), then they're not fit to touch my child...period.  This has really only been an issue for us when my daughter has had to have procedures at a facility other than the children's hospital where she received her MM surgeries, which is fortunately very few & far between.

Whenever Shelbi has had to be put to sleep, there has been someone assigned to only sit there to monitor her BP. And the medicine was ready to be administered if her BP dropped (which they had to give her on at least 2 occasions).  Her NS said during her MM surgery and angiograms and then with her Chiari Decompression surgeries, that the risk of her stroking from the anestetic was bigger then the risks of her surgeries themselves.  So if she ever has to have any other surgeries this will always be an issue.

Hey, Y'all!
I am so glad to be on the site again  - been offline for small tragedies since I got back from the Picnic.
I wanted to say Hey 2 u,, Shari, and send u kisses. I'll keep u posted re the other stuff we worked on but in the meantime?

I wanted to ask you guys about Anasthesia: (spelling grrrrrr!) Can you tell me why it is of particular concern for us? And did anyone figure out the different types (constrictors and non?)
Love,
Bee
(rebecca)

Hello All,

Hey Rebecca glad to see you posting again.  I hope all is going well and you need tocall me when you get a chance. 

Anesthesia and MM, definitly a tricky one but managable with the proper knowledge. 
Epinephrine is actually a hormone that is secreted from the Adrenal gland and a neurotransmitter.  It is used in our bodies automatic "Fight or Flight" response of the sympathetic nervous system.  It causes the heart rate to increase, brochials to dilate so we can breath better and blood vessels to constrict or contract.  It can be symthetically made and used to treat conditions such as severe allergic reactions, decrease bleeding, cadiac arrest and many other conditons.  Epinephrine is added in several anesthetics especially in dental procedures and local anesthetics. 

I will be having surgery for a stomach condition in July and just spoke with Teresa and Dr. Steinberg at Stanford because of concern with anesthesia.  Dr. Steinberg wrote a letter for me to give to my surgeon here and to the anesthesiologist that just simply states that hydration, blood pressure and CO2 levels must me monitored closely during surgery and while still sedated just following the surgery.  AS a MM patient I am always sure to be as hydrated as I can especially before having anything done with anesthesia and I tell the doctors to maintain my blood pressure at 110 systolic or higher (Systolic = top number).  This is different for everyone based on you body and its needs.  Many people with MM have high blood pressure, I have low and often fight to keep mine from dropping to low.  High blood pressure can cause stroke in anyone but low blood pressure in a MM patient = low perfusion of blood to the brain and possible stroke.  Again, always co-ordinate anything with your MM specialist.  The anesthesiolgists at Stanford are experienced with MM patients and know exactly what drups to use and how much, as well as how to monitor.  They are amazing and Dr. Steinberg only works with a certain group that know how to monitor a patient with MM.  I had to have a scope of my stomach done one week ago and it was awful.  The anesthesiologist was so afraid that my blood pressure would drop too low that he did not give me enough anesthetic medication and I was awake for the entire procedure and could feel everything that they did.  It hurt and I remember the entire procedure.  I have already met with another anesthesiologist for my up coming surgery and he has done his research, he had all kinds of information printed and in my chart when I arrived for my appointment and then we talked about MM for quite some time.  He feels very comfortable with handleing my sedation for surgery and I do now that we have met and he was willing to listen to me, read the information from Dr. Steinberg and do some research on his own. 
I personally have found that doing my own reasearch and arming myself with as much knowledge as I can has been very beneficial.  You can always call a pharmacist to ask about diferent medicaitons.  They are very heplful and knowlegable.  Another option is to ask specifically what drugs they are going to use before any procedure or surgery and then research then yourself or ask your neurosurgeon if those drugs are ok for someone with MM disease.  Just remember we are all different and what is good for one of us may not be so good for others. 

I hope this info helps, it is another of those unique problems that MM patients face. 

Shari - I am so looking forward to next year in Philly.
Rebecca - CALL ME, When is surgery?

Tracie

This is a delicate matter...Glad this information is being posted.

and super Hellos to Shari, Becca and Stacie.
Stacie --- Lots of Love and support for you.

This is an interesting post. Luca has been anaesthetized a few times since here bypass for scans, etc and we've never given special instruction to the anesthetist. But I will definately be paying more attention now.

Take care everyone
Mark (Luca's Dad)