Painful NF with injury

[Rockypu]

I know that some of the NF tumors can be painful, and more so with even a slight bump to it.  But this pain always passes in a few moments.  What concerns me, is a NF on the scalp (near the temple) that was hit from a hard fall that has had continued pain.  It is mild to moderate pain, but unusal for it to be so consistant.  Should I be concerned for a possible problem?  How should I proceed?  A CT done at the time of injury was negitive.

[judy143]

A related discussion, DUB in NF patients was started.

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.      
   Neurofibromatosis (NF) results in the uncontrolled expansion of nerve and skin tissue in the form of neurofibromas.  These tumors can compress nerves causing dysfunction and pain. When a nerve is damage by trauma, then an infiltrating neurofibroma may make the pain longer lasting and even becoming chronic.  There are also other possibilities to consider, along with dysfunction in the nerve/skin tissues, patients with neurofibromatosis also have abnormal bone tissue and can also have defects in periosteum (the lining of the bone).  Due to these disorders, even minor trauma, can have major effects. For example, a good smack on the head, could cause a cervical spine fracture in a patient with NF, when another person would get a headache only.  On occasion NF can invade the periosteum and cause a loosening of the attachment of the periosteum to the bone.  When this happens, minor trauma can cause hematomas (blood buildup) inbetween the periosteum and the bone, which is very painful.  I would recommend an MRI of the brain/head to evaluate for any additional problems that could be leading to your pain.  If the MRI is negative, medciations for neuropathic pain such as neurontin, lyrica, elavil, tegretol, cymbalta, etc. will likely be helpful.  Also if the pain is located to one fibroma, you be able to try injection of local anesthetic (Marcaine) for temporary relief.
I hope this has been helpful.

[mike1105]

This is why i suggested the clevelnd clinic (in Cleveland-- not the other ones) or the mayo (in minnesota). everything happens in an expedient, orderly fashion, the way medicine should be.

[Rockypu]

There in lies the problem.  I did try to get in to see a neurologist... his office staff said to call the surgeon.... then the surgeons office said to call the neurologist (a catch 22).  My personal dr. has been tied up / out of town and has been rescheduling all his appointments.   His nurse said it was probably migraine..... I told her that I have had migraines my entire life and know that it was not that.  This pain is local at the site of the NF that was hit during the fall.  But thank you for your post. It's just sad that some patients fall through the cracks like this.  If it was something more critical, it may have ended differently.

[Rockypu]

Forgot to mention the fact that the ER instructed me to call a neurologist ..... they told me to call a neuro-surgeon .... that office told me to call a neurologist.  So I never had a follow-up despite my efforts.  Tried to get into my personal doctor, but he's been unavailable also.

[mike1105]

you should first see a neurologist-- and you may need a referral to one by your MD.
it msay be better to go to the cleveland clinic or the mayo-- your visits will take place under one roof, and more quickly.