eye pain and trigeminal neuralgia

[cjaylee]

I have a trigeminal neuralgia v1.v2 L.  It came on stereotypically but with eye movement pain. At present I am only with the eye movement pain, using the eye for any amt of time causes severe pain for reading, looking from one person to another and so on or if something moves in front of it. Also have severe photophobia.  It is at present sole reason I cannot work.
I have a partial sturge weber and first surgery of decompressing the vessels around the nerve stopped all pain including eye.
(have had repeated decompressions,rhizolysis with injury 7 and 9, MVD with 100% facial paralysis, , trigeminal tractotomy, dorsal column stimulator-lost to infection, (which helped), narcotics, psychotrophics, anticonvulsants biofeedback hypnosis acupuncture. (currently on neurontin)
The vessels grew back after first op and the pain returned. (verified by return vascularized hamangioma v1 v2.) No surgery was successful after. I am currently with a R cortical sensory stimulator implant and have been told motor stimulation is not worth doing.
We have considered blinding and paralyzing the eye.
Do you have any suggestions?
Thank you.

[cjaylee]

you might want to also consider my post under NUMBZ
about numbness in the face.

I am not a dr. but shared with her my expereince....

I have been recommended to cut the Trigeminal... but I am really wanting to rule out other pathological causes first... it is not always just the nerve as in my case

ANNG

Thank you for your reply.
As someone with a 25 plus year experience with trigeminal neuralgia I can tell you that no surgeon with whom I have ever spoken would agree to cut the nerve.  There are so many procedures out there that this is something that is rarely, if ever, done anymore.  The  attendant risks are too great.
That said I am not a medical person and you have to trust your own doctor.
You may be interested in my book, A Pained Life, a chronic pain journey, about my experience with TN. it is the first and only book written on the firsthand experience of living with and fighting against TN.
I do not know if you can post the addresses here but if you google the title you will come up with the book and can read the first chapter excerpted online.
Also Yahoo has a terrific online TN support group and you may find that of some help with your current situation.
Thanks again,
Thanks for your reply, Carol

[ANNG]

you might want to also consider my post under NUMBZ
about numbness in the face.

I am not a dr.  but shared with her my expereince....

I  have been recommended to cut the Trigeminal... but I am really wanting to rule out other pathological causes first... it is not always just the nerve as in my case

ANNG

[cjaylee]

Thank you for your reply.
All surgeries, etc have been done at Univ. centers.  The sensory implant in fact was experimental.
My understanding is that, since I cannot have an MRI because of the implant, a gamma could not be done.

[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.      
    The symptoms and story that you describe is complex.  Trigeminal neuralgia is a condition that causes severe pain in the distribution of the trigeminal nerve.  Common triggers are eating, talking, touching the face and unknown triggers.  The etiology of the condition is not always known, but at least some patients have arteries that compress a segment of their nerve causeing focal demyelination and pain.  Surgery to isolate the artery form the nerve, destroy the nerves sensory potential etc have been tried with some sucess.  From your decription it sounds like you have a vascular proliferation disorder (sturge-weber) that affects the trigeminal distribution and is causing your trigeminal neuralgia.  It also sounds like you have had quite an extensive workup for your pain, and I am not sure I will be able to add much to what you have already had.  One thing I dont think you mentioned is gamma-knife treatment.  This treatment focuses radiation on a small area and helped many people with trigeminal neuralgia refractory to other procedures.  I would suggest that you take your case to a major academic center for re-evaluation (if you have not already).
I hope this has been helpful.

[cjaylee]

Thank  you, I will look into him.

[robertmillerfoundation.org]

Hi, I know little about TN but there is a surgeon in Los Angeles that has been helping people with a unique surgery, his name is Shahinnian at the skull base institute.   This may not be helpful, but it may be something to keep in mind in the future.  I hope you feel better.