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Neurofibroma in 9monthold DS...anyone had any experience with this?

(2 Posts)
hackneyzoo Wed 11-Nov-09 20:01:32

My 9 month old DS has had limited use of his left arm over the last four months with no obvious birth trauma/ nerve damage to cause this. After numerous tests, scans and visits to different Drs he has just been diagnosed with a neurofibroma. He has a (probably)benign tumour onhis neck that is pressing on his nerves.He is due to see a neurosurgeon at GOSH next week to talk about surgery and the removal of the tumour in his neck.
I was wandering if anyone else had any experience of this? How quick is the recovery? Did any subsequent neurofibromas appear? How did you DC cope with surgery at such a young age?

hackneyzoo Thu 12-Nov-09 20:23:40

bump

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