Just wanted to say hi and relay current conditions.

I have been completely pain free since mid-May and totally now not taking any pain meds. H A L L E L U J A H!

So very much to be grateful for......I never thought I'd see the day when I'd feel functional making the bed or washing my hair.

I was laid flat out for 2 months so was very weak from pain and more pain. It hurt to do almost anything. Now I am getting my strength back and doing more each day.

My neurosurgeon does not want to do surgery and he has me consulting with a thoracic spine (neurosurgeon) specialist in a few weeks. More will be revealed later.

So, I live one now at a time and rejoice.

becky

Kiza,

Why do you think you are painfree?

Hi GJZH,

I think it mostly has to do with the thoracic location of my cysts and physical limitations since my diagnosis.

Several activites seem to be able to trigger a flair-up: sneezing, coughing, bending, heavy lifting (plus pushing/pulling), bike riding, pressure jets in hot tub and straining during bowel mvmts. Any of these seem to be able to increase the pressure in the cysts (and/or pressure on the nerves) and activate pain.

I have been very cautious now that I'm aware of some of the things that can trigger the pain. However, it's only a matter of time before the next active episode.

kiza

What was your protocol to becoming pain free?

I have been diagnosed with Tarlov Cysts and have just found this site. I have read all the threads on this subject but they just suddenly stopped.

Has anyone found complete relief from these without surgery?

Have any of the people posting heard about a Dr. Frank Feigenbaum who is doing lots of surgeries on Tarlov Cysts?? He is in Kansas City, MO.

Did anyone try the Hyper-Beric Chamber and get any good results?

Has anyone had surgery with Dr. Long or Dr. Henderson and are now pain free?

I am new to this form so I hope this is the correct way to wade into the postings. I am in such awful pain, I must find some relief.

Thank you for your help
barb

I have not heard of Dr. Frank Feigenbaum ...I have had surgery on the TC with Donlin Long...It did not help with my pain...I have since had a spinal fusion L1 to S1 and that has helped with some of my pain...

At the time you wrote this below, you said you were pain free. What is it that you did to be come pain free? What's your progress now? I'm still in the process of determining what my burning pain is caused from. It notes I have a tarlov cyst on S3 on the MRI. The neurosurgeon doesn't think it's that. I'm doing another MRI (upper torso) the end of this week. Tonight my burning is intense & won't settle down enough to sleep. I'm not on any medication yet. But, I need something soon. I can't take not sleeping. The burning goes through my whole body.

What kind of pain are you in? Burning pain? Back pain.