Hey There Everyone
I'm here asking for your thoughts and ideas. I have Geniculate Neuralgia. Going on 5 years now. I have had Gamma Knife surgery and am 2 years post op. The surgery didn't do anything for me. Here's the thing...my case is extremely rare, I'm talking the 16th person in the world to have GN stemming from Shingles. They can see the scar or whatever on the nerve. When they did the procedure on me he gave me less radiation than even he would give to say a TN patient. Now my Neurosurgeon and my RO have had success after success with Gamma Knife and TN. But still no experience with GN save me.
My Neuro said that I am going to have to convince him to use a higher percentage of radiation in this 2nd surgery.
So...what I am asking you all is for some ideas on what to say to convince him to up the dose. All I have is what I told him 2 years ago. The drugs are eating me up and they are, literally. Going to get scoped the 20th of March. I have another rare condition that stems from all the oral medication I have to take. It's a fight every month with the insurance company to get my meds. My GP is so awesome and she bit off almost more than she could chew with accepting me as a patient. Now she considers it a privilege to have me as a patient and learn about these rare conditions.
My RO is super cool and very understanding of Cranial Neuralgia patients but with me, there just isn't enough data and that frightens him. The side effects from Gamma Knife are the same as TN patients...paralysis, deafness, more pain, no relief. I've already had the latter. I am sick of the pain, the pills and "the way it makes me" to my family. They say it has changed me. I suppose. But they don't know the pain and the panic I go though each time the pain breaks through the medicine barrier. I tried to explain to the Head Pharmacist at my insurance company what the pain was like. I asked her if she'd ever been cleaning her ears with a q-tip and gone too far and bounced off the eardrum? "Oh Yes she exclaimed, that hurts so bad" I said yes it does, doesn't it. I told her "that's my pain, 24/7, since 2011. I have control with medication to a point but not without breakthrough pain. And when they won't accept the dosing my Dr. prescribes it throws my whole pain management out of whack, painfully so.
I told them that I could hardly believe that they would want me to have Brain Surgery rather than give me one more dose a day.
Anyway...I just don't have anything else and I don't think very good these dayz.
If I can't convince him to use more gamma radiation then I won't do the procedure. My daughter said it is a build up thing with the Gamma Radiation so he might not up the dose but rather repeat it. I will have to ask him about that tomorrow...I still don't know what I will do if that's the case.
I would so appreciate any thoughts you might have.
Thank you and remember...be sweet to yourselves.
Always~Laurel aka shinglesdidit