Does anyone else have or have children with Neurofibromatosis type 1 aka NF1?!
Question:
My daugher has NF1 and only has the several cafe'o late spots and macrocephaly and family history of it. I would like to talk to others with children or even themselves that have this disorder. She has had her first MRI and shows no internal tumors at this time but they said that the neurofibromas usually dont form until puberty.
Answers:
I actually have (NF)2.Whitch of course is more rare.Also I do not have cafe'o late spots or macrocephaly.I actually did not know I had NF until my right side went numb 3 years ago.The 1st sign of NF was when I was 12 and I wasn't able to open my hand,my radial nerve had shut down.I had MRI after MRI but never an MRI of my Brain whitch looking back it baffels me.Now I am 21 and have had 3 brain surgeries.All Succesful except my first I lost hearing in one of my ears yet they took out 3 tumors.(Thats very typical for NF 2 patients) My 2nd surgery was a tumor behind my left eye(9 hour surgery),I kept my vision thankfully)Except my 3-6 nerves were damaged so I can't move my eye).My last was a the biggest surgery I have had.medulla oblongata.that could have cost me talking and walking.It was a miracle tho everything went well because it was by the brain stem wall.I have a really really really good neurosurgeon and he also is a good person.We will have 30 minute conversations about just daily life,he really cares bout me.
I don't mean to scare you,I actually have great news for you.The hardest part of all this was when I was at Texasw Lutheran University and got right side numbness.We did not know why.Even went to hospital and they did not help me at all.Not knowing really was the hard part.
That is why it is really good that you are already getting MRI's.When she hits puberty I recommend that she gets one every 6 months.I think everything will be fine if you monitor it.I will pray for your daughter.
Last about myself,I have been really strong throughout this process,and I only think I will have to deal with a gamaknife surgery for my last tumor left on my other auditory nerve.(right now it is tiny)
Ask me any other questions you have.
Artie
P.S. I descided to answer q's about this to help other NF patients.In fact,I am going to NF golf tournament in SAn Antonio on Monday,helping others in the community will make me feel better also.
Answers: