I just found out yesterday that I have Tarlov cysts. I had been having severe discomfort on my left side for quite awhile, and then just about 6 weeks ago it started on my right side. I thought it was just from spasms the right side. it has been so bad that I was in bed for a week on muscle relaxers and narcotic pain killers.

I am quite shocked to read that there isn't many neuro doctors out there that are qualified in this field. I will be calling John Hopkins on Monday and Georgetown to get an appointment. I live in Arizona, but from previous illness I know to look beyond and go beyond to find the best in there field. Many internist, family doctors, and neurologist that aren't equipped with the knowledge do little good for us.

I have another rare disease that I had to go to Philadelphia to see someone there, as just being put on medication and side effects to those, etc...surgery is my very last option that I am willing to do...

I am on disability and was looking forward to finally going back to work...now this!!

Will keep you posted as I find out more and please keep me posted as to what you find out..

Thank you,

Alix

It has been two years since you wrote about your Tarlov cyst. I have them too. I also live in Arizona. You had mentioned that you were unable to find a doctor that could help you in Arizona. Did you ever have any luck?

I sent my MRI"s to John Hopkins they wouldn't help me. I had surgery Decmeber for my cysts. I had same symptoms as you. Mine just kept getting worse. I hope they help you . Amy

Dr. Feigenbaum is in Dallas. Check his website. Just type in his name.