Has anyone had the gamma knife surgery and in doing so worried about radiation exposure? I know it is extremely high in order to destroy the nerve. I would love to know how people deal with and approach the fact even though the radiation is highly targeted, it is still approaching high theapuetic levels. I have pain in both sides of the trigeminal nerve and may need one dose to each side. The idea of that much radiation freaks me out to point I am consdiering Rhizotomy instead.

Thanks!
Alex

Hi, wavegeek.

I have not had gamma knife myself; I have glossopharyngeal neuralgia, which cannot be targeted with gamma knife. However, I am a medical physicist. If you choose to have the procedure, it is the job of a medical physicist to make sure that the gamma knife machine is working properly, and likely to design the plan the machine will use to deliver the radiation.

If you are concerned about the radiation exposure, I suggest you first have a consultation with a radiation oncologist. Keep in mind that a gamma knife machine has 201 sources (beams), so that your nerve ends up receiving about 200 times the dose of any other part of your head. Additionally, the beams are highly collimated (very narrow) so the best is done to spare other nearby tissues.

I know radiation seems frightening, but often public perception of the danger of radiation is rather skewed. A radiation oncologist will be able to explain the risks and their likelihood of occurrence to you, and then you will be able to make a properly informed decision. I will say that if my neuralgia couldn't be controlled by medication, and I were eligible for gamma knife, I would go for it.

-Sarah

Hi wave and squared . I see your both new to posting here and I wanna welcome you both to a great place. Neuro Talk is an excellent way to find support, info, and connect with other who have the same issues... make friends...

I was wondering if Gamma knife is the only option your doc is offering you? what about Nerve block injection or anything like that???
I have never had Gamma as it was not an option for me. nor M.V.D. ...etc...
I have a P.E.N.S. ( nerve stimulator ) implanted for my facial pain which is T.N. and A.D.
It works great I do not have to take any meds for pain any longer and it has given my quiet a bit of control over the pain monster. I am not pain free but compared to the way I was I can bare ,live with it allot better now.
I have heard some good things from others who have had Gamma knife done .I think there are a few posts here about it..
I agree fully as Squared commented talking with a radiation oncologist and getting as much info as you can is the best thing anyone can do . Then you can decided what to do and what feels right what you think is right for you.
A low pain rest of week to both of you
PEACE
BMW

Hi Marshmallow,

I actually have been considering other procedures as well if medicine and/or time doesn't heal this thing. My pain happened within a year after I had elective removal of amalgams and a refilling with composites in two molars. MVD would not be an option for me. The pain is not classic TN but more neuropathic pain, variable throbbing/aching type quality, not electric or sharp. Fairly localized. Can you tell me about the PENS and how that works? What is the procedure? What other procedures did you try? What kind of pain you have? Thanks! Alex

Mashmallow,

I don't have classic TN, but more of a trigeminal neuropathic pain...throbbing/aching that is constant and varying levels. Can be mild to unbearable. This started many months after dental work was done to remove fillings. I am doing medication currently with an oral facial pain specialist. I am considering procedures if medicine and/or time doesn't heal this. I also may have more dental procedures done since it still may be an unresolved dental issue. I know more dental work an be risky, but this has been very hard to diagnose. Could you tell me about your PENS procedure and how you decided on that? What type of oral pain do you have?

Thanks,
Alex

good web site on neuro stimulation. what it is how it works...for facial pain
http://professional.medtronic.com/


that is one of the links that is up top of this forum under helpful web sites.... there is a whole lot of info you should look threw if you have time wave. I have a neuro stimulator NOT a deep brain motor cortex stim! do not want you to get them mixed up mine is way less evasive

I have T.N. and Anesthesia dolorosa . my lower right never snapped when I was in auto accident I have plates and screws on each side to hold lower jaw together. I had two options after the meds..the many meds failed to help..first I could have a pump implanted in back of skull or try neuro stim.... thats a no brainier..since meds did not work why have a pump screwed into my skull??? went with the stimulator ...works great. plus you can try it before they implant ..so you know if it will help or not .
I hope this helps you.
low pain wishes.
PEACE
BMW

p.s. wave geek do you surf?????

Hey Marshmallow,

Did you get TN from the accident? I am taking the med route right now as a diagnostic tool, and I may have more invasive dental work done although it is risky. My dental pain specialist is suspect of one of the teeth that had the trauma and it might have it root canaled before I do any other exteneded pain management. And I do surf out here in California. Do you surf in Florida? Look forward to keeping in touch with you.

Alex

Yes I was in a sever accident and my face /head hit steering wheel and then windshield...my seat belt saved my life... saved me from going threw windshield. was stopped behind other cars in school xing zone and a semi hit me from behind. Thats how I got t.n. and after a bit the docs realized my nerve was snapped ...the anesthesia dolorosa from that part of the nerve, ...and the plate screws on that side are to close to that area.

You have a dental pain specialist. how cool is that.
naww i dont surf but have plenty of friends that do.. Ever hear of New Smyrna Beach ? It is the shark bite capital of the world.Its very near where I live too, so far we only have like 4 this year. and another down on west coast south of us. so 5

Please be careful with dentists some can just do work for money and make the pain worse but it sounds like you have a knowledgeable dentist and that is great. also you seem very informed another plus. I too had LOTS of mouth and teeth work done after auto accident with the T.N. stuff hounding me , so I understand the need to fix things before moving on to controlling the pain. I will be keeping you in my thoughts and positive wishes . Its is nice to have a new friend way over in Cal. Have a great weekend and may it be pain free.
PEACE
BMW

Hey, wave. I definitely understand your wanting to explore all other options besides gammaknife, but I do think you should get a consult appointment with a radiation oncologist. They're the only ones who an give you all the facts on it- dentists and pain specialists aren't qualified to do so, just as a radiation oncologist cannot give you advice on dental matters.

And hi, marshmallow! I'm actually not new here, but I've forgotten two previous passwords for my old screen names and their associated e-mail addresses, which are almost certainly defunct. I was on years ago as SmallWanderer and Sanora (or something like that). I'm 23 now, and have had GN for nearly 10 years. Blech!

Alex,

Sorry to read about your pain. I have had the Gamma Knife treatment for classic TN last September. After a few weeks, the my pain went away. It was great for 60 days and the pain returned worse than ever. I had the MVD surgery on 4/3/09 and have been pain free ever since. I would make sure with your Doc that the GK treatment is the best option as it isn't considered a permanent 'fix' only a band-aid. As for the amount of radiation, like the other medical physicist commented, your oncologist will (hopefully) carefully take into account all your physical make up, body weight etc. in order to determine the exact right amount delivered during the treatment. Its painless during the rpocedure itself, some moderate swelling occurred due to the halo they will undoubtedly attach to your head, but otherwise painless. They won't over radiate you and turn you into a 'hulk'. GK treatments are very precise. Make sure you have an expert nuerosurgeon or nuerologist read your MRI to ensure there is nothing else going on with your trigeminal nerve such as an artery or vein banging into it.

Hope this info helps. Best of luck in your decision. Wishing you many pain free days.

Todd Hedspeth