Tumor wrapped around the brain stem

Does any one else have this? Also tumors wrapped around the carotid arteries on both sides of the neck. None are visible from the outside (yet). Those anyway, diagnosed NF1 last year 21 yrs old, doctors are guessing at having it for many years?? But does not know? This year small tumors are starting and more and more on scalp! Major surgery last year to reduce the size of the one wrapped around brain stem because it had pushed the spine over causing back/shoulder pain. Now have no feeling on the left side of head/ear and down neck, doctor severed a nerve while in surgery, but did not want to get any closer to brain stem in fear of ending up a paraplegic. Still able to walk and talk today, but have to go back and put in a Rod in the neck, doctor said they removed too many ligaments and she can not hold up her head, it is a daily struggle. Now after the rod is put in, that means they will not be able to follow the growth of the tumor on her brain stem, because that will mess up the MRI's..... This is my daughter I am talking about, I am incredably heartbroken. she has a large cafe au lait spot on her neck and down one arm. I never knew, no one, no doctor all these years told me to have her checked? One more question? She see's a Neurosurgeon because of the spinal surgery needed, that is where we started. Should we find another Doctor that specializes in NF1?

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If you haven't already been seen at an NF clinic then yes you should find someone who specializes in NF. Since you are in Alabama you might want to see about getting in with Dr. Korf at the University of Alabama, Birmingham. There may be a bit of a wait but it will probably be worth it in the end as this is one of the top docs where NF is concerned. Explain your daughter's situation and ask for the next available app't. They can help you sort out which NF specialists would be best for your daughter. Here is the information.

http://www.genetics.uab.edu/NeurofibromatosisClinic.html

Cindy

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Thank you Cindy

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No problem. How old is your daughter?

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22

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I would also recommend Dr.Korf is a leading expert in NF. I saw in Boston as a child until he moved to UAB. I am also 22, but luckily I do not have many complication I do have one 3mm tumor in my brain that is being monitored. I will keep you daughter in my prayers.

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