Hey Everyone. So a week ago I went for my 6 month check up after my Gamma Knife procedure. I was hoping to qualify for another try at Gamma Knifeas the first was unsuccessful...they game me such a small dose of radiation the first time and my Neurosurgeon and I discussed maybe upping the radiation for another try but she has decided that another Gamma Knife would be futile. She had me meet her at another office the next morning to get my first of ? PainStim implants. Don't know if anyone's had these yet and if so I would love to hear of your success or not. Mine had 3 needles placed inside my ear and a power pack behind. It runs for 72 hours and feels like a nerve jumping...a bit annoying. This first treatment only aggravated my pain but I guess the process is to reteach the brain to react to pain stimuli.
My Doctor said she would try up to 15 of these procedures to treat my Geniculate neuralgia which has gone on now for 3 years with no help from procedures so far. I'm thinking I might be able to put up with about 7/8 of these before I'll say HEY! Not WORKING!
I am very fearful of MVD but that's the next procedure on the docket says she so I will pray and hope that this PainStim will help.
In the meantime I am still on oxycontin and Lorcet for breakthrough pain, Tegretol, Neurotin, Xanax, Imitrex Injections for migraines. I have real bad fibro as well and with cold and snow returning to the Northwoods I have been a mess. Can't go outside or be in any cold or drafty area. My daughter has been buying me cute hats to wear but I wear them all the time seems like, not just to go outdoors. I can't do anything I used to do outside, like hunting and playing in the leaves with my grandbabes, taking beautiful fall walks....it's all gone for me. Makes me so sad. So much stress and unhappiness in the house as of late. Still taking care of my son who got hit by a car last year. His leg injuries are coming along very well but his traumatic brain injury... he is slow to heal from and is just not the same young man he used to be. Family issues like everyone else has but I just can't help anymore. I get confused and tongue tied trying to talk things out and I'm just not the person who can really help with anything much anymore. I have been doing a lot of canning from the garden and that makes me feel like I am contributing but I have to give it a few days in between canning sessions because I am so broken afterwards. I have been getting physical therapy twice a week but they keep on telling me that I have to take it easy in between and I think I do but I still have to try to be a contributing part of the family and it doesn't take much to hobble this body so I quit therapy for now until I can commit to their plan a bit better than I can now.
The confusion, the tears, the constant pain that I keep very well from my family...most of them. One will tell the other when they return home..."Mom had a hard morning" or "she cried the whole time she was doing dishes" etc. Sometimes I think I'd be better off just staying in my room but then I find that when I push myself to get chores done, do some canning, take care of stuff I CAN do that I'm not as aware of the physical pains as I am when I am sedentary and let them take me over. You all know that but I just thought I'd throw that out there again.
Anyway, this is what I am doing right now. After the 72 hours I rip the thing off and throw it away. My next implant procedure is Nov 4 and every 2 weeks after. I guess this PainStim has only been approved in the US for 1 year but has had success in Europe for 10. I will keep you updated on how and if it works for me. My last MRI and MRA showed an area of "inconsistency" on the nerve that has been there since I have been seeing this Neurosurgeon. They do not know what it is but "guess" that it is scarring from the shingles. Does anyone think that if I go for MVD that they will be able to section that "area" out and it will be a cure.....? I just have not heard of anyone actually having an area that can be visualized before going in....does this give me any change in my prognosis? Love to hear what you think.
I'll let ya'll go. The kids are going to carve pumpkins and that is something that I CAN do with them tonight. Here's to you all having a warm and snuggly evening. Take care, be sweet to yourselves!