Hi.  Daphne had an MRA and perfusion study yesterday, and her neurologist called awhile ago to tell me that they believe she has Neurofibromatosis type I (NF1).   I know a few people on this board have been diagnosed with the same thing.

Daphne had gliomas (small, hopefully benign tumors) on her optic nerve and  in her Hypothalmus.  She has also developed a few cafe au lait spots in the last year.

I am just learning about this disorder, so if anyone can share information, I'd love to hear from them.

On the other hand, her MRA showed that her right middle carotid artery has opened up.  This baffles her doctors, since they don't know of any other moyamoya case where an occluded artery opened back up  :)   Her doctor also said her left STA was huge, and that her blood perfusion has doubled since last year. He also said the tissue damage from Daphne's second stroke (on the left side) was minimal.

Jenny

  I wish I had some information ( I know nothing about NF1)for you but all I can offer is (((HUGS))) and prayers for your little Daphne.I'm sorry she has yet another stumbling block in her path.She's a fighter though and i'm sure with your love and support she'll get through all of this OK. I wish I could offer you more,just know she's in my prayers.Keep us posted.I'll be interest to read other post with information aobut NF1,I believe ther aer others here who also have this.Take care......
Mary Grace

Hello.I am sorry to hear about your daughter.My 4 year old daughter also has NF1 and Moya Moya.She was diagnosed with NF when she was 6 months old and just recently diagnosed with MM.She developed a tumor in her optic nerve(optic pathway glioma).It was actually in the optic chiasm(the part where the optic nerves cross).Her tumor started growing (from what I understand most don't grow).She underwent 8 weeks of chemo but we had to stop the treatments because she stayed sick alot.When the tumor started growing again,we changed hospitals where she underwent radiation treatments.The tumor is now smaller & has stopped growing.I don't want to scare you because everyone is different.With NF,the problems can vary from mild to severe.You can find alot of info on the internet about NF1.There is so much info about NF that I won't try to put in in here.What I can tell(you may already know)is that it does cause tumors to grow on nerves.Most tumors are benign and very rarely do they become malignant.My daughter only has the one tumor in her optic nerve & has MRIs regularly to monitor it & make sure that she doesn't have more.I will be thinking of you & your family & you will be in my prayers.If you would like to talk more or would like any more info,please feel free to email me at jnokes5@yahoo.com.
Jennifer