Exciting to see all resources in one site

by Donna
(NY)

I am excited to see all that is available for this. Growing up, I was very sensitive to certain items to the touch- i.e. styrofoam, chalk, eraser, flat paint and silk. I didn't like my hands ever dirty or full of something. Certain clothing wasn't acceptable like turtlenecks, scarves, even jewelry around my neck and yes my socks with the seams correct. Everyone thought I had my quirks but it was very tolerable. I was also told I could hear grass grow.

About 10 years ago, on top of the severe headaches and neck pain I experienced most of my life, I began having transient paralysis in face, arms and legs and partial blindness in left eye, visual disturbances, just to name a few. After years of misdiagnosis' a NS discovered I had a rare birth defect called Arnold Chiari Malformation (a milder form of spina bifida). Basically the bottom of my skull wasn't present at birth and the bottom of brain began to herniate into the spinal column. This is the laymans version. While awaiting surgery, I began having more and more sensory problems.

After my surgery in 2003, it was taken to another whole level, but I manage. I was unofficially diagnosed by NS as sensory dysfunction in 2005 but I never really did anything about since I had more physical issues that needed to be addressed.

I have been having a very hard trying to desensitize for the last 2 years or so - mainly by drinking wine. Bad thing since I have struggled for a bit and I am now an alcoholic. I also had gastric bypass so it a no no. I haven't drank in a few weeks and feel good but I still am going to an outpatient group for help on my on volition.

My sensory is really wigging out now. When I mentioned to the counselor and the Dr at the support group, they suggested I go back to NS and see if there is a link. Now I don't have insurance so going to NS is out. I did the checklist and have more than not checked.

After the long winded scenario, has anyone had experience with this and did OT help?