Hello, I have 2 son's affected with different types of head/facial neuralgia/nauropathic pain.

My youngest son who is now 18, who fell when he was 6, was first diagnosed with various types of headaches after the fall including: CDH, cluster HA, migraines, intractable migraine, TN, 2008 suparorbital neuralgia and now atypical facial neuropathy. The supraorbital nerve was removed above the eye without any relief of pain. One year later, he had more surgery to remove neuromas off the nerve, still no relief. Since removing the nerve, the pain no longer travels up his forehead but stays localized behind the eye. We were referred to a neurosurgeon who does the motor cortex stimulator implant for neuropathic pain. He is in the 1 week trial period but we will have to extend that to 2 probably 2 weeks because he has now gotten a head pain he has not had in several years or a typical migraine from the stimulator.

I would like to visit with anyone who has had a motor cortex stimulator and maybe get some feedback on what to expect or if it has helped anyone in this group. We were not told this new migraine was a possibility. He is not willing to trade one bad pain for another and proceed with the implant if we do not get this resolved soon.

My older son, age 26, is affected with occipital neuralgia and we are working on finding a surgeon for decompression surgery. He also has a history of migraines, as does my oldest son and their father and their grandmothers on both sides. He is still able to work but it is getting harder to concentrate with the amount of medications he needs to take to control the pain in order to work. He is seeing doctor who has the same type of neuralgia pain and told him surgery was his only option after trying many medications the past 2 years without any improvement. Any advice for either son would be much appreciated or if you could recommend a good surgeon for his decompression surgery. We are considering a surgeon in Texas who you may be familiar with, but have not made a decision yet.

My older son's job and career may soon be in jeopardy if we do not get this resolved soon as he has having to take more sick leave, and my youngest son should be starting college and making a career for himself instead of so tired from various medications he can not do much of anything.

There has to be a better solution for people with neuropathic pain. I still wonder and believe my youngest son's problem could be corrected surgically, expect that it is directly behind his eye which is a risky area to work in according to an orbital surgeon we took him to. If the MCS is not successful, we will most likely continue to look for a surgeon who is willing to tackle a "difficult" and not a "textbook" problem as his diagnosis is rare and not the norm for facial pain. Any advice would be much appreciated. Pam

Welcome to NT!
I'm so sorry to hear what your sons are going through.
You've come to the right place to get support, understanding, and alot of valuable information.
Here's a couple of forums I know you'd benefit from:

Regarding the motor cortex stimulator - You'll get some good input from the Trigeminal Neuralgia forum:

http://neurotalk.psychcentral.com/fo...sprune=-1&f=26
Take special note of the 'Sticky' section clear at the top of the screen when you get there. You'll find some very valuable info on the stimulators


Also, the Occipital and other Cranial Neuralgia Forum would be good:
http://neurotalk.psychcentral.com/fo...prune=-1&f=105

My heart goes out to you as you reach out and seek information and support for your dear sons. I pray that you'll find the answers you are looking for.
Please holler if you need help finding your way around the forums. Everybody is caring and understanding of what you are going through.

Caring,
Rae

welcome to NeuroTalk Hi Pam I bumped up a post for MCS to top of page in the t.n. forum and I also sent you a message with info and a link about MCS. I hope you see this post . I noticed one of your sons is looking into MVD for his O.N.
does the MRI show a compression on his nerve? has the doc considered
a PNS ??
I am Keeping your sons and you in my prayers.Please let me know if I can be of help, I hope to see you posting soon this is a great place full of info , contacts and support all from the best people you may ever met online right here , Welcome to NeuroTalk.

PEACE
BMW

Pam,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here, just let us know how we can assist, you will see we are are supportive and relaxing place. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene