Any opinions on Gamma Knife Radiosurgery for TN?

General General TN & GPN (Old Site)
1

My Mom is due to have the Gamma Knife Radiosurgery for the TN. Has anyone been through this? How did this turn out for you? What should we expect? Thanks.

2

Gamma Knife is known to have less successful outcomes than MVD both on the initial results and the persistence of pain relief when it helps. Statistics for GK are on the order of 50-75% success for a first operation in patients with Type I (Typical) TN, compared to 90-95% for MVD by an experienced surgical team. Persistence of positive effects is an average of five years for GK, compared to 70% pain free after 12-15 years for MVD.

I've also talked with neurosurgeons who told me that when MVD is later tried as a second procedure after GK, the surgeon will often find fairly complex lesioning and adhesions around the nerve, due to radiation spillover (though that's even more a problem with Cyber Knife than with Gamma Knife). It is a major mis-nomer to call GK a "non-invasive" procedure simply because it doesn't involve an incision through the mastoid bone.

If I was advising a family member, I would recommend against Gamma Knife and in favor of MVD as a much more precise and non-destructive procedure. If you would like to read the most recent practice standards of the International Radio Surgery Association, you can send me email at ■■■■■■■■■■■■■■■■■■■, and I'll mail them back to you.

Regards and best,

Red

3

Hi Daisy. I had 3 years of intense burning pain relief from the GKRS procedure. I did have some side affects mostly hypersensitivity on my ear and my right side of my tongue became numb. I also had sensation when I would swallow cold drinks of burning…like swallowing ice in the back of my throat, as the liquid would go down my esophageaus. I was able to be off of the meds during the 3 years, but I still had my aching/crushing type pain, but it was tolerable! My burning pain has returned in May of this year and I am taking Effexor, and Topomax for it now. My story… Min

4

Thanks Mim. It is so hard seeing my Mom in pain. The doctors want to do the GKRS next week. She is 77 and currently diagnosed with Lung Cancer. She had her TN attack while in the doctor’s office. Upon seeing what she was going through the team of doctors decided the GKRS was the priority before treating the cancer. What would you do differently if you had it to do again? Thanks again Mim. I truly appreciate this TN support group. Daisy

5

Well, I’ve been thinkin more about this recently. Because I am getting better results with the Effexor, Iwould have to say I wouldn’t do the surgery. But I was very desperate and in three times as much intense burning pain back then. When it returned the level was 5, when I had the GKRS the level was 15… Knowing everything I know now about my condition which is ATN or Type II. I would stick with medication and use MVD only as a last resort. Good luck with whatever she decides to do. Best wishes. Min

6

Thanks Mim. Daisy

7

Daisy,

I am trying to help my mom also with trigiminal pain. If you dont mind me asking, i am wondering what you ended up doing with your mom and how it went?

Thanks

Daisy May said:

Thanks Mim. It is so hard seeing my Mom in pain. The doctors want to do the GKRS next week. She is 77 and currently diagnosed with Lung Cancer. She had her TN attack while in the doctor's office. Upon seeing what she was going through the team of doctors decided the GKRS was the priority before treating the cancer. What would you do differently if you had it to do again? Thanks again Mim. I truly appreciate this TN support group. Daisy