Something new maybe for treating TN or ATN

I have been to so many specialists to try and find out what type of cranial neuralgia I have.

Regardless of the dx what I have found out is MVD is the standard for treating TN, the stabbing pain. But it does not always work and can lead to more pain...they are calling it TNP, a broad term for Trigeminal Neuropathic Pain...this might be ATN pain too.

I took a research I had done on "invasive neurostimulation in facial pain and headache syndromes" to a pain management doctor recommended by a neurosurgeon from this site in Tampa at USF. He was very interested, asked if he could copy this and send it to another neurosurgeon at USF who works with the neurosurgeon at USF-Tampa from this site. He did not think it was being done here in Florida. I have not heard back yet but I did find several other doctors in neurosurgery and pain management in the U. S. that are trying this. This research was being done in Belgium. He actually told me I should jump on a plane and go to Belgium. Not so fast for me, I still have a negative brain MRI.

Getting a diagnosis has become a ruling out process for me. The most interesting aspect of this type of pain control is yes, it is invasive but infection or lead migration are the only risks. What I have learned is anything that is destructive in nature like gamma knife or RF, actually all the alternative treatments for TN other than MVD are not advised to do by the neurosurgeon from this site...only MVD for true TN. If you are atypical, or possibly have anything that might prove you have damage this treatment has been around for awhile. It is just hard to find where it is offered. There are references to something called "motor cortex stimulation", "peripheral nerve stimulation" and "trigeminal stimulation". Motor cortex has been something reserved for parkinsons but is now being looked into for pain control.

If we go back 20 or more years ago, pain management with medtronic pumps was only done for cancer pain. This nerve stimulation was done for neurological disease but is being investigated and done now for chronic pain for cranial neuralgias like TN or I think if you are atypical or ATN it may be this TNP. Certainly done for damage after an MVD.

I was only trying to find out if SCS, "spinal cord stimulation" would help me but I am not a candidate for that because of extensive scarring from surgery. This may be something that could help those who have negative brain MRI's, no blood vessel compressing a cranial nerve but still have cranial neuralgia. I do believe there are some of us that have true TN, negative brain MRI but surgeons will not go in to investigate without a finding on MRI.

I myself think I have atypical GN, but a neurotolgist believes my past tmj surgery could be causing me problems with CN V, it can cause ear pain and the bitter taste. All my MRI's for the spine at 57 from all the fusions I have had are coming back with this thing called "bony hypertophy" which is simply arthritis. So, on to a tmj specialist, another moving MRI to check my joint out as I was told it is only 1 mm away from CN V. If I have bony growth, no way is a surgeon going to try and cut it away from that nerve. I would opt for this other treatment.

A surgeon in '05 made an adventurous mistake trying to give me my lumbar curve back again by cutting a fractured L4 and it was not an exact science. The bone came down crushing my L4 nerve root and caused me permanent nerve injury called a dropped foot.

When I hear back from this neurosurgeon that works closely with the neurosurgeon recommended on this site in my area I will let you all know. I do have 3 other doctors that may do this in the States. No, I am not jumping on a plain to Belgium...I do not have a DX yet after searching for almost 2 years.

I read so many entries of all who suffer from facial pain, no matter the dx, many of you have been searching much longer than I have been. Some a decade or more....hmmmm, that does give me realistic perspective on this baffling disease and the run around we all seem to get running from one specialist to another.

Just a some words to think on. My daughter asked me if I could learn to live with this and quite frankly I have been for almost 2 years. Maybe time to settle down and do nothing. I could do that but then again I am healthy enough to keep searching and not just for myself but for all that suffer from facial pain. If this type of treatment has been posted somewhere on this site please point me in the right direction Red!

And, has anyone tried a drug for neuropathic pain called nucynta? Not covered by my insurance, the copay is over $200 a month. I have found some responses on other sites that it is just a trumped up tramadol and does not work.

Still searching....always hoping someone will be pain free! Sharon

Sharon, you have been through so much. Thank you for still searching as I just learned a great deal from your comment. Thank you for taking time to inform us. I hope your search is positive! I am investigating the P-Stim now, also called NIPP device for the ear. Very good results with Migraine pain and non-invasive from what I have read and what the doc says. Thank you again, Daryl

Yes, that is what is so great about these approaches. The risks are infection which comes with anything you try, and once you find what works for you just lead migration if you get a permanent system implanted. Is yours a pheripheral stim? Is your ear pain a type of GN? Or is it coming from your neck C2-C3? Who is doing this and where? Too many of the other things done for cranial neuralgias like MVD, which can be successful some of the time but if not leads to this other pain, TNP. And anything destructive to the nerve or cutting is a big risk. By the time we get through failing all the meds our options are limited especially if you are negative brain MRI. My regular pain doc copied this research, knows about it and I think this is something that will be done my pain management doctors or neurosurgeons that want to take the time to do it. I am in SW Florida and have not found anyone that does it here. Waiting on this neurosurgeon at USF-Tampa that works with a neurosurgeon from this site. I will look up NIPP...thanks, Sharon