Today I met with my neurosurgeon and we scheduled my motor cortex stimulation surgery for mid-August. I feel very at peace with the decision... today at least. I am sure I will doubt it, and get nervous as it gets closer. My MRIs showed a compression of my trigeminal nerve in the Pons, near the brainstem - an inoperable region of the brain. This is why I cannot get a microvascular decompression surgery. The best we can do is manage my pain, which is where the MCS comes in. My Dr. thinks the surgery is very promising for my case. If anyone reads this and is interested, I intend on posting the results as they occur. For the first time in a long time I feel hopeful!
LBHiker, I hope you get the best possible outcome. Keep us posted.
Thank you dancermom! I am going to stay positive, because I believe it can only help my chances of it being successful. I like to joke that I am becoming a cyborg. On one hand it was a difficult decision to make, because this surgery is not a one time thing that you heal from. It takes daily maintenance with a remote control. Blah blah blah other daily concerns, flying, etc. On the other hand it was an easy decision to make. I have been suffering on and off for 8 years (I know not as long as many). I often have year long stretches of uncontrollable pain. I have run the gambit of medications and they unfortunately aren't successful in managing the pain. So it was almost easy to decide (after research and processing it) to say yes. It is my only option for pain management other than opiates. I'm 30 and want to avoid the latter option as long as possible (especially because they don't seem to be particularly effective). It won't "cure" or stop my pain, but it will help me manage it. Everytime I think about it a calm washes over me. Regardless of the outcome, I know I've made the right decision.
How are you doing now?
Hey Saraiderin, thank you for checking in! Still no surgery, as insurance pulled the plug mere hours before I was supposed to go under. I am currently on my final appeal, but it doesn't look like it is going to get approved. I am a bit at a loss. I will be updating my blog tonight, and hopefully more frequently at LeeLeeBot.WordPress.Com if you care to follow along (no pressure, just throwing it out there).
I was just reading another page and people were raving about how they have had this stimulator implanted and have been pain free. They live in NY and California. I replyed because I can't get it done here in MA either due to my Dr. telling me that the FDA hasn't approved it yet for TN. I just went back and re read the other posts and they did mention something about off label use so maybe the Dr didn't said it was being implanted for spinal use. IDK What I do know is that after 8 years of suffering I want this done also so please let me know if you are successful and if you live in MA also
After a long struggle with my insurance company, and the hospital... I have raised money to pay for MCS MYSELF with a gofundme page. I am scheduled for surgery in 2 weeks.