hi i am new to this site and was wondering if you can answer questions i have about tarlov cycst i feel it will help me to speak to someone else who is suffering from this horrible diease.ive been bed ridden for 3 years now and i am looking for someone who has extreme burning in my vagial area when i urinate.did you ever hear of any1 having similar symtoms.

Hiya,

I have a Sacral Tarlov cyst which causes extreme pain in my lower back and chronic sciatica all through my right leg to my foot. Having read a lot of literature, it appears that Tarlov's cysts can occur anywhere on the spine, although the occurance of pain- causing cysts is apparently rare !!, ... I do not think so. I have felt disabled for 3 yrs, have had to give up my job, and was mis-diagnosed two yrs ago !!! The two options open to me here in the UK is Narcotic based pain-relief which I don't want to start on, or relatively dodgy surgery , with severe risks. But to answer your ?, yes, they will cause sciatica dependent on which nerve root ends they are growing on.

I have them in my low back, causing me sciatica pain, as well as a bit more uncommon. the neck area. the pain I am in is debilitating. I know we can all sympathize with each other. I am taking carisoprodol for fibro pain. that is what I am taking at the moment, as I have had such bad reactions to many of the pain relievers. and which one of us just wants to mask our pain. we need something done in our behalf

I too was diagnosed back in early April with a large tarlov cyst and/or cysts. I have been to several neurosurgeons in my area and none can help but have been instructed to find a surgeon because of it's size (ya...that's all the help they could give me). After going to a pain management specialist, they put me on extended release Tramadol (Ultram) for the day to day pain and overall, it's working alright. I do have an appointment with a surgeon in Seattle tomorrow who has perfomed quite a few surgery's and am hopeful.

The pain management has been very helpful in getting through these last few months but I don't want to live with this pain for the rest of my life.

If anyone out there has had this surgery, I would love to hear your story.

Thanks!

Hi,
I have just joined and I did have the surgery. If you are interested in any info would you please let me know. thanks...kittycatdoglover

Hi, I am new so not sure if this will get to you but I need a Dr. in Seattle who knows anything about Tarlov cysts AND DDD/disc herneation. Who did you see? Thanks

I'm looking for a neurosurgeon in the Seattle area who has performed these surgeries. Could you share the name of your surgeon? Thanks, and I do hope you feel better soon.

I had surgery for Tarlov Cyst 12-5-2011. I had 5 giant sacral cyst. They removed 1 and drained 4. My pain was unbearable the last 6 months before surgery. Dr. Feigenbaum in Kansas City did my surgery. They told me I was one of the cases he has had.
I'm still in pain but not 24/7. I'm glad I had surgery to get rid of some of pain. I'm 40 if I don't get better than what I am now. I will try more sugery later.
People just don't know what kinda of pain we go through. If you have any questions please email me. Amy

I had tarlov cyst surgery in April of this year in KC with Dr. Feigenbaum. I would recommend his team to anyone with this terrible disease. To contact his office immediately. *edit*
He is strait foreword and will help you.

Hello
I have had the surgery for the tarlov cysts and if anyone would like any info on the situation please let me know. I had to travel out of state and had the problems with insurance as well. Its very frustrating the lack of Doctors that can help us. I cant even find a Doctor in Mich that is willing to be my follow-up Doctor. If anyone knows of 1 in Michigan that is willing please let me know so that I dont have to keep traveling so far away. Thanks so much
kittycatdoglover