Hello everyone,

I am new here and was hoping to build a support network regarding these terrible Tarlov cysts. Also, I really just want to rant for a bit to people who understand what I'm going through!
Here's my story-
About 10 months ago I started experiencing intermittent shoulder pain across my clavicle. It wasn't terrible, so I didn't think much about it and brushed it off as stress. Then about 5 months ago, I started having headaches that would originate in my shoulder and move up to the temporal region on my head. Again, being a full time student at UC Berkeley, I dismissed it as stress and picked up a prescription of Vicodin from my doctor. Then, 3 months ago the real pain started: I have been experiencing severe pain in my neck and upper back that has been radiating down my right arm and across my chest.
My doctors were simply "guessing" what could be wrong and put me on various medications to try and "alleviate" the symptoms.

I've been passed around from doctor to doctor, physical therapist, social worker, etc for so long that I finally demanded an MRI. In my head I thought "how can you treat something if you don't know what it is?!" The MRI revealed a few things: C3-4,C4-5, and C5-6 all show signs on mild foraminal stenosis and there is mild facet joint hypertrophy along with a trace annular bulge. It's also showed that there are bilateral perineural cysts at my C5-6 level. I knew RIGHT away that these were causing my pain because I've told all of these doctors that it feels like "something needs to be popped in my neck but it just won't pop!"

Needless to say, I saw a "specialist" today who said "I'm not quite sure if that's the source of this pain." I was honestly dumbfounded. I literally pulled the MRI films out, put the scan showing the cysts up to the light, pointed to them and said "These cysts are blocking the nerve exit hole almost completely! How is this not the source?" He said he wanted to run more tests.

All in all, I'm so freaking sick of this pain! I've lost my entire life to this pain and can barely enjoy anything these days. I am taking Percocet 5/325 q 6hours prn (which is bullcrap because it only works for like 2hours), Neurontin 600mg TID, just finished a round of prednisone, and started the Lidoderm patches today.
Out if all of those, the Lidoderm and Percocet seem to work the best, but I'm still freaking hurting!

I'm just tired of this, and some nights I go to bed hoping that I won't wake up in the morning so that I don't have to deal with this pain anymore! I don't feel like I deserve this, but maybe I'm supposed to learn some valuable life lesson from it all?

I don't know, all I know is that it would be nice to talk to someone so that I know I'm not alone in this!

Thank you for reading and listening to my rant
-Jake

Jake,
Been there....you can PM me and we can discuss possible paths of treatment. It will require extensive testing to confirm that the Tarlov cysts are indeed the source of the problem, but be patient. It was five years from the date of my accident until Dr. Feigenbaum restored my life. There is hope for recovery from this.
David

I'm not sure how to do the private messaging...but I would like to talk! Can you send me a PM and post here? That way I can send you my email address or something, it makes it a lot easier for me because I check my email like every 10mins!
-Jake

Jake,
I have sent my contact info to your email account.
David

My daughter has been in pain for 5 years and sent to and fro to many Drs and has had so many tests and no one could find out what was wrong. Now this Dr. says it is a Tarlov Cyst in her tailbone area and he will operate. She can not deal with the pain any longer and she is willing to have the op. but it is risky. She could end up paralyzed or with a urine or poop bag because of damage to those nerve that make this all function right. Scary. She is 50 and is living with me, in my loft, over my garage. The recovery is 5 days, laying flat in the hospital and then home to normal activities but no lifting. IF ONLY it were going to be that easy... I would not be so worried. We have exhausted all other possibilities for this pain. This HAS to be it. You need to see a neurosurgeon. Good Luck .

J for Timy