I am currently trying, with my neurosurgeons, to make contact with other hospitals and surgeons that have done Gamma Knife for Geniculate Neuralgia. They are having trouble finding anything anyone has written about it in any medical journal, reports, etc. It looks like my having this surgery done depends on those contacts being made. If anyone is willing to share their information on this subject I would be eternally grateful. Thank you so much for taking the time. Always~Laurel
Geniculate Neuralgia (aka "Nervus Intermedius" Neuralgia) involves a relatively small nerve branch between two other cranial nerves. The target zone for vascular decompression can be hard to find and hard to get at, though MVD is used and is often successful.
I intuit that one of the reasons you and your doctors aren't finding anything in medical literature on the use of Gamma Knife against this condition, is that there ISN'T much and GK is really not appropriate for this variant. Likewise be advised that even for the best-case simple Type 1 TN, the published practice standards of the International Radio Surgery Association reveal that pain recurs for about 50% of all GK patients within the first three years. I haven't seen similar stats for geniculate neuralgia. The largest number of cases of GN that I recall being reported in one place was like 15, and all of them were done by MVD.
I hate to rain on your parade, but from the reading I've done in 17years of talking with chronic face pain patients, I really can't recommend Gamma Knife for anybody who is otherwise able to go with MVD.
Regards and best,
Red Lawhern, Ph.D.
Resident Research Analyst, LwTN
I would take 3 years, or weeks :) Really don't want to do the MVD but it looks like I may have to make that decision. They haven't turned me down at Midland...yet, but are reluctant on Gk to be sure. I feel pretty hopeless and each day my pain gets harder to control. Thanks for the info Red. Mine isn't facial pain. It's directly in the ear, like a hot pick, and it doesn't stop...there are no 'attacks' it's just there all the time...I dull with various medications but these are taking other systems in my body down and I feel like they'll kill me in the long run. Tough pill to swallow. Thanks again for taking the time. Always~Laurel
Yours does seem like GN, but without the stabbing. I had constant ear pain like someone was drilling a screwdriver into my ear with atypical facial pain and that was TMJ. I did need surgery for the joint, that was '86....I understand yours feel different and you do have a dx for GN. If Midland does not do the MVD for this which sometimes involves cutting of the nervus intermediate nerve, the place to go to is UMPC in Pittsburgh. Because yours is directly in the ear only have you ruled out TMJ joint problems? I am back to consulting a DMD, apparently they do understand involvement of the cranial nerves and tmj. Good luck to you, Sharon
shinglesdidit said:
I would take 3 years, or weeks :) Really don't want to do the MVD but it looks like I may have to make that decision. They haven't turned me down at Midland...yet, but are reluctant on Gk to be sure. I feel pretty hopeless and each day my pain gets harder to control. Thanks for the info Red. Mine isn't facial pain. It's directly in the ear, like a hot pick, and it doesn't stop...there are no 'attacks' it's just there all the time...I dull with various medications but these are taking other systems in my body down and I feel like they'll kill me in the long run. Tough pill to swallow. Thanks again for taking the time. Always~Laurel
I too recommend Dr. Ray Sekula at the University of Pittsburgh. Unfortunately, he was unable to help me with my GN, he truly is top in the field of GN due to MRI results which showed he could do more harm than good doing surgery. I truly respect his opinion and expertise. Everyone there is top notch and will give you the best care possible.