I am in excruciating pain from a sacral cyst.(............can't find a doctor that knows much about them. Anyone is Texas? I've heard about Dr. Long at John Hopkins (but a little far from Texas) HELP!

Are you talking about a Tarlov's Cyst (associated with sacral nerves?) or something else....I had something very similar last year but I am up here in Alaska so cannot help with Texas but a neurologist or neuro-surgeon should be familiar with the cysts once found on a mri....

Good luck in your search

Kim

if not email me and I will pass on a pdf document I have from last year on Tarlov's cysts and treatment.

Hi
we have a subforum for Tarlov Cyst

it isnt very active but there are some posts there that may be of help to you

here is the link
http://neurotalk.psychcentral.com/forumdisplay.php?f=73

There is a very good doctor in Houston texas at the Baylor clinic. His name is Dr. Daniel H. Kim . He just discovered a cyst located at the end of my tailbone, that 3 other doctors didnt notice in 2 previous MRI. He has written books about the espine and is a very nice ,likable person and attentive to details.He only sees new patients on Thursdays.The other days he performs surgeries.
His phone number is 713-798-4696
Address: 6620 Main Street, suite 1350
I hope this information will help you ,I know how painful that can be, GOOD LUCK!!!

I have started having pain in my lower 6 years ago. The doctors couldn't figure out a reason as all the MRI conclusions came out to be clear. I can't sit for more than 10 minutes in unless the chair has extra support so always carry my cut out pillow all around. 2 months ago i sat on the floor for more than 4 hours and the next day when i woke up my lower back was locked up until the knees. Know, with the help of painkillers and a cortisone shot, my condition had improved-only to be able to walk like a robot rather then bent forward. The doctors suggested SI joint dysfunction, but the physical therapy kept making it worse. Then they suggested hyper mobility syndrome, since my joints are very flexible. The radiologist wrote in my report, "incidentally noted perinueral cyst in right S2" but none of the doctors I have been to seem to pay attention to it. Beside severe pain - which not going anywhere- I started having leg muscle spasm when sitting in specific positions. And have not been able to lay on my back, especially if it is a hard flat surface for almost more than 7 years.

I didn't pay a lot of attention until the pain flare which started 2 months ago but now I can't do anything...

I am living in Orlando, and don't know who to talk to. I have insurance and my doctor is open to referral since this is not his area of specialization.
Please help!

I was diagnosed tarlov cysts s1-2,s2 2weeks ago after taking mri. I have burning pain on buttock, so I cant sit down over few minutes,and have sciatica both legs and foot. I take gaberpantin 200mg at night. NS asked me to increase dosage but I dont want to do it until I meet pain dr. MY NS said if you have a surgery it makes aggravate, you are going to have a greater problem and not able to go out. I am doing investigation about TC and learned there are several doctors nationwide including Dr. Frank feigenbaum. Im scared of this situation. If anyone hade surgery please share your story.

Hi Judy ~ I would DEFINITELY ask my doctor to refer me to a NEUROSURGEON and take my MRI films with me. Your doc will know who is a good Neuro to go to.

A Neurosurgeon would be familiar with this type of cyst, and would know the best route to take. I'm sure it IS painful since we all have to sit.
Please let us know what the Neuro says, and what he decides should be done. I wish you the very best -- please take care and God bless. Hugs, Lee