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atypical trigeminal neuralgia

How successful are botulinum injections to treat atypical trigeminal neuralgia?  My pain is centered in my left upper gums but spreads throughout the left side of my face below my eyes.  Throbbing pain with knife-like pain are the usual problems.  I always have some pain.  Wearing glasses triggers intense pain.  I've tried numerous medications with limited success.
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A related discussion, Could I possible have atypical trigeminal neuralgia? was started.
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Dear Cheryle:

There is always the possibility.  One thinks of diabetes, amyloidosis as systemic disorders that can manifest in polyneuropathies.  In addition, chronic alcohol use, autoimmune disorders, rare inherited disorders, etc can elicit such symptoms.  I would talk to your physician able the possibilities.

CCF Neuro MD
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I was diagnosed with trigeminal neuralgia(right side of face) in 1996 which I take neurontin and tegretol for.  The meds help a lot, though I have flare ups at times.  I also suffer from insomnia (recently diagnosed sleep apnea), a substantial case of TMJ (both jaws have arthritic joints), and chronic neck pain. At times my fingers or hands will jerk suddenly and I have extremely dry mouth all of the time.  I also had surgery for carpal tunnel and ulnar nerve, both right side, in 1992 and 1993.  Could all of these problems be related somehow?  I am depressed and exhausted all of the time.  Thanks for any help.
Cheryle
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thanks for the comments.

CCF Neuro MD
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I was finally diagnosed with your problem back in 1996. It took from Jan 96 to Aug 96 for someone to find out what was wrong. I was treated for everything from tooth related to pscyhiatric related until I found a Neurosurgeon who listened to me.By then the pain episodes were lasting up to an hour at a time.I had 2 MRI that showed nothing. He finally went in and did exploratory surgery and found that I had a mass of scar tisssue that had mangled my arteries and nerves together and was causing pressure on the trigemnial nerve on the right side of my face. I have had no more syptoms since I had this surgery. Thank god for my doctor!!!!!!My best to you and you have my sincere hope that you will find a solution soon. I have been there and know your pain.
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Dear Ann:

Alot depends on the surgeon. We have seen some patients with complete resolution of their problems after surgery and some that continued with their problems even with surgery.  We do not think surgery is the answer unless the situation dictates.  Something like hydrocelphalus would be such a circumstance.

Sincerely,

CCF Neuro MD
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Hi CCF,  Thanks for your response.  I hope to get answers with my upcoming Mri if it is definately a syrinx.  Also having the occipital headaches again that are triggered by vagal response. I have read up on "Cough Headaches" Mine of course is the symptomatic kind due to my ACM.  Each time I would cough I get sudden pain in the occipital/neck area stabbing like pain along with numbness in the neck and shoulders and tracking down my spine.  I really wonder if not having the dural graft with my decompression maybe the problem...still not enough room for my herniated tonsils with basalar compression. Is doing the dural graft with these decompressions kind of outdated for neurosurgery?  Wondering how successful these decompressions are with/without the dural graft?

Thanks for all your help with these questions.
Sincerely, Ann
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Dear Ann:

A shunt would be a relative safe procedure.  It would keep the syrinx stable.  However, the decompression should have stabilized the syrinx as the pressure from the Chiari I was removed.  What does your neurosurgeon tell you?  Shunt can fail, they can become infected, etc.  Make sure you find a good neurosurgeon who has done many of these before and make sure your syrinx is the etiology of your problem.

Sincerely,

CCF Neuro MD
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Avatar universal
Hi CCF,  I have ACM type 1 decompressed over 1 yr ago.  Now being looked at for Syrinx=Syringomyelia/hydromyelia.  Want to know what would be the treatment for a syrinx if found?  I have chronic terrible back/neck pain.  Scheduled for a three hour Mri Scan next wednesday.    I have read they can do some sort of stent/shunt into the syrinx draining in the abdomen...wondering how save this process is....what complications would there be with shunting a syrinx in the spinal cord?

Thanks,  Ann
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Avatar universal
Dear Bonita:

Sorry to hear about your pain.  The use of botox for trigeminal neuralgia is not a universal treatment.  True it will help with blocking nerve transmission, but it depends where the lesion in the nerve is affected.  Most of the time botox is used for muscle problems such as spasticity or dystonia.  I would be very hesitant to use botox for trigeminal neuralgia.  I would make sure that this is the last resort for possible pain management and this person has done this in the past with good results.

Sincerely,

CCF Neuro MD
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