I'm considering a non-invasive treatment. I have had TN for 7 years or I'm not sure anymore and I am on a ton of drugs, so I stagger around and have no life. We have spoken to Stamford University Medical Center where this procedure was developed apparently. Some possible and probable side effects scare me, plus radiation to the Trigeminal nerve is unnerving-so to speak!
Please tell me good news, as I am taking 1500mg of Trileptal, (started with 300mg,) 2000mg Keppra, and now self medicating with 1200mg of Neurontin. Sometimes I add a little mid day. I'm freaking out. My neuro said to try weaning off Keppra slowly and adding Dilantin. I'm too scared right now to make the change in case Dilantin doesn't work and I have dropped a little Keppra. I'm having daily small pains and two major electric shocks last month. I had gone two years with nothing, and much lass drugging.
I really am getting scared as to what I am doing to myself. I have luckily been very healthy.
Thanks for your input.
If you haven't already visited the "Help With Research" tab on the top level menu, then I suggest that you do. Within that long article is a section on treatments that discusses Gamma Knife and Cyber Knife.
see: Treatments for Typical and Atypical Trigeminal Neuralgia
In my personal opinion based on 16 years of research in the medical literature as a layman, I would advise anyone in my family that Cyber Knife and Gamma Knife may not involve a surgical incision, but neither qualifies (in my view) as "non-invasive". A basic question that should be explored is whether you are eligible for Microvasacular Decompression. A second and perhaps peripheral question for this particular thread is how you come to be "self medicating" on a prescription medication? What did you intend by the term?
Go in Peace and Power
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
Lala, if you go to the empty search box in the very far right top corner, you can type "gamma knife" or "cyber knife" or "laser treatments" one a a time, and everyone who has discussed it will pop up. I knew that when I looked at various people's profiles, I found quite a few who had it done multiple times. Bob Snodgrass is one, but not hard to find many others.
They all said it was not effective. I guess the repeat tries show that. Anyway, a lot of people who can't bear the side affects of the medicines, like myself, who was taken off within a week due to liver damage, find a pain specialist who offers opiates. They are quite effective, and can be mixed with just 1 of your other meds that don't make you feeel miserable. So many are scared of using opiates, but I don't get any side affects from mine, and I can function better with them than without them. So many are scared that they will get addicted, but research shows that those who take it for severe pain don't get addicted. They get dependent, their body gets used to it, but you are dependent on your current meds anyway. Doctors are not even taught the difference between addicted and dependant. You might want to read posts in "Opiate Therapy" group, or even join it if you want to know more. There are so many different meds you can try and mix with others. If one is making you like a zombie, switch to another. There are at least 11 anti-seizure meds. There are also many discussions about natural treatments, and various tricks people use at home to lessen their pain. Here's one discussion where the comments offer more info than the posted discussion.
http://bit.ly/iqfb8e . Look at the top of any page here, where it says forum/discussions. Look for others that say "things that lessen the pain" or something similar.
Best wishes, Sheila
I did some research prior to my recent surgery. I would definitely compare gamma knife to cyber knife. The gamma seems more precise and geared more toward brain injuries and the cyber is better for the lower body. Either way or surgery itself, do some research and get value opinions.
I have had GKRS on 2-29-08. I have ATN. I was free from drugs and intense pain for 3 years.
Thank you all for info re cyberknife. I'd be interested to know where you got the cyberknife surgery. I think it matters. I am looking at Stanford U Medical Center. Thanks very much.