Hi, I used to be a member many years ago when it was the old forum. I thought Brain Talk had disappeared for ever so it's really good to see it still going!

I'm Valerie, 50 years of age and live in the Netherlands. I was diagnosed with TOS/T4 Syndrome about 20 years ago and have had my ups and downs with it since. Now it another down time....

I've got nerve impingement to my right arm and have a lot of pins and needles, numbness and pain in that hand. I also have some nerve impingement to my left side but it's not so bad. The cause I was given was possible birth trauma. The only surgeries I've had have been bilateral carpal tunnel open release back in 2003. Since then the numbness and pain improved for several years but gradually the pain etc. is making a comeback.

During the years 2000 - 2006 I went through a period of severe headaches that were eventually diagnosed as Chronic Paroxysmal Hemicrania (a type of cluster headache), occipital neuralgia and migraine. Thankfully after several years of heavy medication the CPH headaches seem to be in remission but I wonder how much the muscle tension etc. from the TOS has had a part in it all? I still have occipital neuralgia and the occasional migraines.

For the last couple of years I've noticed a difference in the height of my collar bone with the right side higher and closer to my throat. I experience some throat pain but last night was scary because I dreamt I was being strangled and I woke with pain and tightness in my throat.

A chiropractor diagnosed me initially after many hospital doctors didn't know what to do other than offer me Valium. He kept my back and neck in check with regular treatments but since moving to Holland from England 10 years ago things have gone downhill. I've finally found an osteopath that's not too bad and is working on me nearly every week at the moment to try and sort out the current setback.

The constant pain in my neck, back, arms and hands is being to wear me down and I don't feel I can share how much it all hurts to those around me. How can anyone who's not experienced this sort of pain really understand?

If you've got to the end of this long post then thank you for staying the course. I didn't intend it to be so long....

It's good the forum is still here!

Valerie