I am curious as to why, if medication inevitably seems to fail, that surgey is not an option initially? Is it necessary to go through all options with the different types of medications before seeking a surgical consult? Have most of you found this to be an insurance issue, or is it a personal choice?
Thanks for your thoughts
Christine, I don't think it's directly an insurance issue. From years of talking with patients, my reading is that doctors are aware of the imperfect outcomes and risks associated with the various surgical options. They are also appropriately aware that when a procedure is done, it can be harder to put the skunk back in the box if and when pain recurs and a repeat or second procedure is believed necessary. Success rates for second and subsequent surgeries drop noticeably. Thus there is a professional bias toward delaying surgery until later in life, as long as medication can be found that provides adequate pain relief (even if with significant side effects).
Many patients now press for earlier surgeries, though sometimes with decidedly mixed results. MVD is still the gold standard of surgical treatment, despite the resistance of many neurosurgeons to using it with Atypical TN patients. On the order of 70% of all Typical (Type I) TN patients who undergo the procedure are pain free or significantly improved for 12 years or longer. Success rates for second MVD operations after such a prolonged period are relatively good (better than 50/50, unless the patient's pain is dominated by atypical symptoms). RF Rhizotomy does almost as well, with somewhat less persistence of pain-free outcomes but an equally high initial success rate in Type I pain (over 90%). Though each has its advocates, the other surgical options aren't as often initially successful and don't produce persistent pain relief for as long.
At the bottom of the heap (as it were) is glycerol rhizotomy, which rarely lasts longer than two years (though it can be and often is repeated, even multiple times). Gamma Knife is a close second-worst option, with 50% of all type I TN patients having pain recurrence within three years following the operation -- and a lifetime limit of two procedures due to radiation effects. If it was left up to me, I'd ban GK in TN patients who are healthy enough to go through MVD. I've heard more than one surgeon use the term "barbaric" with respect to this procedure.
I hope this casts some light on your concern? Feel free to follow up.
Regards, Red
Thanks for your response ,Red. I am seeing a new neurologist on Thursday, hopefully he is well versed in TN. I would really like a consult with a neurosurgeon to discuss MVD, and see if I am a candidate. I had surgery in 2003 for a Chiari Malformation, and did go to back to that doctor with a new MRI in January of this year to rule out the possibility of the pain being caused by anything related to that surgey. He felt what I was experiencing was totally unrelated, and referred me to a neurologist., who felt it was all related to the Chiari Malformation. Needless to say , I am seeking that second opinion!
Again, thanks for your response. I have just order the book Striking Back, Nd look forward to learning all Imcan about this disorder. Years ago, when I started developing the many unusual symptoms that I ultimately learned were causes by a Chiari Malformation , I spent many hours online, trying to find out any information I could. I was lucky enough to find a group like this one that helped me tremendously with information and support. It took six months and many doctors, some of whom ignored my symptoms, for me to get a diagnosis and the proper treatment. I really appreciate all your efforts with this group, and want you to know how thankful I am that you take the time to answer my posts.
Best regards
Christine