Posted by Sandra Page on May 20, 2003 at 22:11:47:
Moyamoya Our daughter who was 38 years old and deaf since birth because of reubela and who also had NF was diagnosed with ovarian cancer stage 3 c on Jan 12 we were sent to our regional medical center in Lebanon, NH for the surgery the night prior to the surgery the anethesist came in to speak with us and asked me if we had ever been told that she had Moyamoya. I had never heard of the disease. He explained to me what it was and I told him that she had in fact had TIAs some years before and in 1995 she had a complete Thalmic stroke from which she recovered quite well I was led to believe that the reason for the stroke was the NF. She came through the surgery fine but shortly after waking up in the recovery room she had a massive cerebral stroke affecting both sides of the brain and did not recover. She was on life support for six days and the did numerous test but got no response and the damage was very severe. On the 29 they had to disconect and she passed away. I had asked the anesthesist the night that he was talking to us if perhaps we should contact Boston and he said he did not think that it would be necessary. I have since found on the web that anesthesia with Moyamoya has a totally different protocol from other paritnts. and that they should be hooked up to an eeg machine during the procedure. I know this was not done. I also have found information linking Moyamoya to people with NF. I have NF one of my other children have it and also two of my grandchildren have it. I am concerned about them and would like to hear from anyone else who has a history of NF in their family if they have had this problem or if anyone has heard of this. I do not want to alarm my daughter but wonder if perhaps I should make the childrens pediatrician aware of this.
Thank you for any information that anyone can send or post to me.
topaz_03561@yahoo.com.