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Old 11-09-2010, 11:55 PM
ronKJ6KAI ronKJ6KAI is offline
Junior Member
 
Join Date: Oct 2010
Location: Lancaster, CA
Posts: 6
10 yr Member
ronKJ6KAI ronKJ6KAI is offline
Junior Member
 
Join Date: Oct 2010
Location: Lancaster, CA
Posts: 6
10 yr Member
Post There are options other than SRS or MVD such as PENS/SCS

I had successful Micro Vascular Decompression surgery in CA in July 2009 to clear my original constant and shooting pains but it caused a new constant left cheekbone pain (Anesthesia Dolorosa reported by other MVD surgery patients on the TNA and Neurotalk web sites). The left cheekbone pain is my main pain marker but its pain is accompanied by all left side upper and lower teeth , left side of tongue and left side lips in aching, burning pain. The pain has never gone below level 4 and increases every day to level 6 in mid morning and goes up to level 8 if I don't go to bed and either sleep or achieve some relaxation which is very difficult after the pain has increased. This new pain after MVD is really terrible but not as bad as the pre-MVD electric shock like pain. It is a tough decision to make on having the surgery. For me, it came down to when I could no longer stand the pain (measured by how many days I could get out of bed in a week). Neurologists still ask me why I had the surgery and it is clear they do not understand the pain.
I had SRS surgery in March 2008 with zero success. SRS, Gamma Knife, Cyber Knife and others are all similar methods for destroying the trigeminal nerve and they tend to tout the accuracy of pointing the beam of one machine versus another and forget to mention that they don't know precisely where to point the beam. Each doctor will point out the advantages of the machine that he has access to.

Recommend you go to the Oregon Health and Science University web site to get some excellent information on treatment options on TN Type 1, TN Type 2and AD (they call it deafferentiation pain). OHSU publishes neurological articles and presents at the TNA conferences as well. Wish I had better info to provide and can only say this site and the TNA site ** are the best sources of info. Fumbling through the medical sites was less useful for me other than to find the very low success rate reports of ablative sugery (SRS, Gamma Knife, Cyber Knife, etc.) then finding that MVD success rates are not much better. The good news is that the nerve damage causing the pain is unique to each individual and you may be in the lucky 70 percent success group.
My pain management doctor in CA is trying various pain drugs and the only relief has been with Fentanyl and hydrocodone which create equally bad side effects such as nausea, irregular heartbeat, muscle cramps in legs and arms and constipation without relief of the constant pain. 50 mcg/hr Fentanyl patch is not sufficient to prevent daily pain increases but 75 mcg patch causes a new, additional forehead and occiputal pain with nausea that is worse than the left cheekbone pain.
Also on the bright side, this web site and the TNA web site ** have grown tremendously in the past few years and now include optional treatments like PENS/SCS that were not even mentioned (or, more likely, I missed the posting(s) that expire).
Another suggestion that cannot be over-emphasized is to have family or friends search for specific items like the treatment options for you because searches are so fragile or dependent on searching on the right word or words or asking the right question. My brother searched on words that never occurred to me and found some awesome info. But, even more important, he learned something about my problem rather than continually quoting media and sales bites on treatments for me to try. You can't describe your pain to someone else but they gain a general understanding by helping you do research on what is best for you.
Best of luck in finding your answers.
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