Unhappy with the neurologist, I went to a pain management doctor. My pain was a 12 out of a 10 on the pain chart. The doctor diagnosed me with ATN and CRPS Type I. The doctor stated that I was not a good candidate for MVD and we would have to find a drug coctail that worked. So far we haven't. Does anyone else have this diagnose? If so, what coctail is working for you?
I know this was Posted nearly a decade ago, bit just in case you are still here, or someone else searches for this. I recently had CRPS added to my ATN diagnosis. I have had incredibly severe constant crushing/aching pain for almost 6 years. And I finally found a pain doc who could help me. Nortriptyline and Oxcarbazipine were my best drug combo, but the side effects made me have to keep the doses low, so I never got full relief, only what I called “livable” levels where I could eat, sleep, and live, but not work full-time or have the life I did before.
2 weeks ago I got my first Trigeminal Ganglion Nerve block with Lidocaine and steroids. I have been nearly pain free for a week and a half and I couldn’t be happier! My pain doc says the nerve blocks.are.mich more successful than medications for CRPS type cases. And eventually I hope to get a neuro-stimulator implanted for more lasting treatment. Gamma knife is also an option, but it scares me to maybe damage the nerve more.
I am reading this Feb 1st and wondering if you still have relief from that block or have you moved on to the stimulator?
If this is about my comment, the nerve block stopped working after 28 days. The doctor was only willing to do them every 3 months, and they cost $1000 after Insurance paid their part. So the doc and I agreed they were not lasting long enough to justify the cost. And they would not be an effective treatment if it only gave me relief for a little less than one month out of every 3.
I had Gamma knife in December. I currently have elevated pain levels since doing that, but it is still very early in the waiting period to see if I get relief from the Gamma procedure. So I don’t know if it will work or not.
If it does fail my next options are very limited and I don’t yet know what I will do.
I had a block last week with absolutely no improvement at all. The doc mentioned a stellate block possibly for next time but I am still leaning on a stimulator. I have continued to read and be discouraged to have a nerve destruction procedure like a MVD to only have the pain return worse at a later time.
Actually I should have said Gammaknife and not MVD. However, MVD is not recommended in my case since I have ATN and not the classic type. How did they explain that a MVD would work for ATN for you?
I’m not sure I understand your question. My Neurologist suggested MVD early on before my diagnosis was more up in the air (I currently have idiopathic facial pain/ATN from trauma/CRPS on my official paperwork.) At the time I had not even convinced her that I didn’t have classic TN. The 2 neurosurgeons that I have consulted with at that time and another later, saw that I had Atypical pain, and a history of oral trauma and said I was NOT ever going to be a good candidate for MVD. For me MVD is off the table, because there is visible damage to the nerves in my jaw and no sign of blood vessels behind my ear. So we assume the damage is in my jaw and MVD would be pointless money and damage to my body.
I’m sorry, I switched those around. I meant gamma knife was not recommended especially for me as I have type 2 and more destruction to the nerve was not favorable. Have you had any relief yet?
Basically all I have left are destructive procedures and expirimenal treatments. I chose to try gamma knife honestly because it was less destructive than say, a lazer riytsotomy, and multiple doctors said it was the only standard procedure left available to me.
My sergon literally said, “you are not the ideal case, I wish you were classic TN because I would say you have a 85% chance of it helping, but as Atypical I would estimate a 50/50 chance it helps or does nothing, but you don’t have many options, so I would give it a try.” So I did.
What I really want is an implanted neruo stimulator. But insurance will only help pay for that if you fight them because it is considered expirimenal, and the best way to fight them is to show proof you tried everything else that is nonexpirimental and it failed.
So if the gamma knife fails, I will begin my fight for the stimulator.
So far I have not noticed any reduction in pain levels. If anything my pain levels are higher, but it is hard to tell if that is from Gma knife, or my usual increased winter pain.