Hi all, saw neurosurgeon to day, the one that did my Gamma in July. Good news is there is still a slight chance that the Gamma worked. He wants me to wait 6 weeks if I can stand it. That is an eternity with the pain I am in now. Attacks are lasting 40 minutes to 1 hr 45 minutes. Prior to last Wed I had never had an attack last more that 2 minutes. If I can not stand it, he will do MVD but only gives me a 70% or less chance of success, not very good odds. If I make it 6 weeks and still no better, he will redo Gamma. I am on Lamictal and Baclofen. He upped dosage of Lamictal to 600mg. I have relied on Percocet and Vicoden also. Hopefull y with more Lamictal I will not need the narcotics as much. Looks liks bleak future for me. I so want my life back and some normalcy!
Hope you find some thing that relieves your pain.
I was in your shoes not too long ago and then they did the MVD.
My neurosurgeon wanted me to do the MVD first before they tried GK.
I have faith that you will find your cure soon.
Hoping for pain free days for you.
Rick
Hi Sharon,
I hope the GK does give you more improvement. And hopefully the lamictal will help you soon. I am sorry you are in so much pain.
When my pain got so bad, I was willing to try surgery with just a 50/50 chance or even less. I have all of us in my prayers. The decisions are so tough.
Liz
I also thought it was normal to have attacks that went on for a long time. Excuse my question but what is a Gamma, what does the surgeon do. I want as much information as I can get when I see the new consultant, I have always just blinded believed every word the previous doctors have told me and look where it has got me. No-one every told me a MVD might not work I found that out for myself when the pain returned after 2 years. Really sorry you are feeling so much pain. My doctor only prescribes one medication at a time. So glad I found this site it has given me hope. Hope you can win through in the end Margaret
Nancy Price said:
Best of luck to you. I thought it was normal to have attacks for hours.
Margaret, Gamma knife is precedure in which a precise beam of gamma radiation is directed at the trigeminal nerve to create a lesion. Its a (mostly) non-invasive precedure! 
what are this surgeon’s statistics for this procedure on his other patients? how many other patients has he had to “redo” with Gamma so soon? how many successes? failures? any cases of Anesthesia Dolorosa? these are questions i would want to know before committing to another majorly destructive procedure so soon (6 weeks!).
consider consulting another neurosurgeon for a second opinion. in all my research, increased pain after Gamma Knife is not a favorable sign.
i am not a doctor. speak to your own about what i have said here.
vesper
Before you permit a surgeon to do a second Gamma Knife, I would strongly recommend that you get a second opinion from someone who does several MVD operations each month. At one time, surgeons who were doing this procedure were advertising that pain relief might not be observed for as long as six months after an initial use of GK.
Overall, however, GK appears to have a simply terrible record of pain recurrence. Likewise, the lesions created by GK make any other form of surgical correction much more difficult. In a prospective study summarized on the TN Association site, I recall that only 20% of a group of about 140 patients who received GK for “classic” (Type 1) trigeminal neuralgia had relief from pain that extended past five years. In my personal view based on 15 years of research in the medical literature as a layman, that’s not an acceptable surgical outcome.
Regards and best,
Red Lawhern, Ph.D.
Former Webmaster and Member of the Board for the US TN Association.
Thanks for the info Red. I will do that befor any decision is made. I have actually done better with the meds increase but I hate to have to rely on this much medication.
Richard A. “Red” Lawhern said:
Before you permit a surgeon to do a second Gamma Knife, I would strongly recommend that you get a second opinion from someone who does several MVD operations each month. At one time, surgeons who were doing this procedure were advertising that pain relief might not be observed for as long as six months after an initial use of GK.
Overall, however, GK appears to have a simply terrible record of pain recurrence. Likewise, the lesions created by GK make any other form of surgical correction much more difficult. In a prospective study summarized on the TN Association site, I recall that only 20% of a group of about 140 patients who received GK for “classic” (Type 1) trigeminal neuralgia had relief from pain that extended past five years. In my personal view based on 15 years of research in the medical literature as a layman, that’s not an acceptable surgical outcome.
Regards and best,
Red Lawhern, Ph.D.
Former Webmaster and Member of the Board for the US TN Association.