This is astronomically against, but it happened today

When you have a disorder/disability that affects between 1 in 15,000 to 1 in 20,000 you never expect to meet someone with it, you never expect a face to face conversation. You actually feel more isolated than the average “disability”.

Today I met someone with my disability, in my church. God works such interesting acts. On one hand I now can talk to someone who gets how I had two teeth abscesses and never knew, I now know someone who knows how it feels to be looked at by the outside world as perfectly fine, but feel like everything just hit the fan.

And then I feel sad. I have said this before, and I will reiterate this. I WISH NO ONE HAD THIS DISABILITY, EVER. When you are knocked down by it, you aren’t just down, you know what Hell feels like (trust me I never wanna spend eternity there) you scream because the pain is that severe, and death seems like a viable option. I won’t give in, doubt this wonderful lady will either, I just wish there was more being done for this disability.

How long have you had TN? What symptoms do you have? Are you on meds and also have you had an mri/mra done yet? Sorry for all of the questions!! I suffered with TN for 6 years and as a chiropractor at the time, I tried everything medical and non-traditional with little to no relief. They had found a cyst in my rt sinus where most of my symptoms were located. I kept believing that my pain was related but finally after a repeat ct scan it had not changed any in several years and my ent Doc really did not think it was coming from there. He ordered the mri/mra and it clearly showed compression of the Trigeminal nerver by the superior cerebellar artery. I knew that if I was ever going to have a chance of getting this condition corrected I needed to pursue the surgical approach. I looked for a neuro surgeon who used the minimally invasive endoscope for the mvd surgery. There are not a lot of surgeons that do but I did find a Dr Michael Alexander at Cedar Sinai Hospital in LA. Living in North Idaho this was a close as anywhere else that had a surgeon using this. I sent all of my records saw the Dr. on a Thursday, had surgery on Friday and was out of the hospital on Monday. It was a rough first day but got better each day and I now have been 2 months pain free. I really do believe that God led me to this man. I pray for your decisions and that you will have clarity in direction. There is hope!!

Blessings to You!

Jay Carpenter North Idaho

I am three years down the line, on tegretol, my general practitioner won’t even refer me to a neurologist, but I have come to my own conclusions that MVD is my only option.

Unfortunately going where you did is just financially out of the question, but hopefully something good turns up in London.