I have a 1.7cm cyst at L1-L2. Dr. Feigenbaum (in KC) called it a Tarlov cyst even though not technically in sacrum. Apparently had for several
years and become symptomatic in 8/07 with a squat machine incident.
I have had several MRIs and a myleo. Beyond the cyst, lumbar looks
great in films. Local neurosurgeon was ready to remove the cyst until it
filled with contrast. At the point, he wouldn't touch it. I Sent
films to Dr. F. who could see L1 nerve root involvment and some erosion of
vertabrae. My symptoms consist of radiating pain in groin and lower
back pain. He indicated I was a good surgical candidate when I was
ready.

At this point, my symptoms are tolerable except between flare ups. I
have been a fairly active individual (yoga 3-4 times a week), snow
ski, etc. In last six months, I pay a price with my back with the
activity.

I want ahead and got on Dr. F's surgical schedule. I am having some
second thoughts wondering if I am in a "enough pain" yet for
surgery. I understand there are some advantages to early
intervention and these cyst generally don't improve.

Question: Any thoughts on getting the cyst removed at this point?

Hello I am responding to your post about contacting Dr. Feigenbaum. I have left a message for his nurse to call us as my husband has a 6.7cm Tarlov Cyst in his sacral spine. We have been to four doctors now with all the test done and this last doctor agreed to do surgery but has only performed one tarlov surgery in his career and that was twenty years ago. We are hoping to here from Dr. Feigenbaum soon. How long did it take for them to contact you or were you lucky enough to speak to someone right away. Do you know what the time frame is once they decide to do surgery? My husband has been dealing with this since March 2008 and can not work, sit or stand for any period of time due to pain in sacrum area.
Thanks for any info.
Betty

Truthfully, if it were me I would do a lot of research in this area and ask to speak to former patients, both successful and unsuccessful. I think from what I am reading that initially some people feel relief, but it is short-lived and some feel no relief at all. I never felt as though the surgery on the cyst helped me at all, but I am quick to report that I have severe spinal problems. I would speak to more surgeons and more patients of surgeons, not just the successful cases....Find out from those that do not feel relief, why they do not. Do your homework....

Concerned Wife,

I would never allow a surgeon that has only done surgery on one Tarlov cyst in twenty years do surgery on the cyst. You need to speak to someone that has done many more of these surgeries. It is a new surgery and you may have to travel, but in the end it may be worth it. I saw many, many surgeons before I allowed surgery on my spine...and traveled to three states...When it comes to the spine, you cannot be too careful....

I published a list of surgeons that is recommended by the Tarlov ***. for doing surgery...Please look at that list of docs before allowing anyone to do surgery.

http://tarlovdisease.populus.org/rub/2



Foundation News Updates
Research Announcement
November 2008


The National Organization for Rare Disorders’ Medical Advisory Committee has announced that Anne Louise Oaklander, M.D., Ph.D will receive the Tarlov Cyst Disease Foundation’s grant for Tarlov cyst research.

Dr. Oaklander is an attending physician in Neurology and Neuropathology at the Massachusetts General Hospital and Associate Professor of Neurology at Harvard Medical School. She directs the Nerve Injury Unit, which she founded in 2002 at Massachusetts General Hospital, following her fellowships at Johns Hopkins. Dr. Oaklander works in the emerging field of nerve injury and neuropathic pain and is internationally recognized for her research profiled in Science and New Yorker magazines, as well as in print and broadcast news media.

We are excited about Dr. Oaklander's research with the Foundation's grant and hope that her project will put us one step closer to improved diagnosis and treatment outcomes for Tarlov Cyst Disease. Dr. Oaklander’s publications should help educate the medical community and public alike about the diagnosis and treatment of Tarlov cysts.

Tarlov Cyst Disease Foundation Board of Directors

The Researcher Selection Process:
Requests for research proposals were sent out in March 2008.

Initial Research Proposals were received in May 2008.

NORD's Medical Advisory Committee extended invitations for final proposals from the research grant applicants July 2008.

Full Research proposals were received September 8, 2008.

Medical Advisory Committee selected the researcher/grantee November 2008!