Originally Posted by GJZH

Louise,

I too suffer with Tarlov cyst and have had the surgery with Dr. Long at Johns Hopkins in Baltimore. If anyone would like to ask me questions about the surgery please do not hesitate to contact me...

Originally Posted by GJZH

Louise,

I too suffer with Tarlov cyst and have had the surgery with Dr. Long at Johns Hopkins in Baltimore. If anyone would like to ask me questions about the surgery please do not hesitate to contact me...

Originally Posted by ruthA

can you tell me what success you have had with the surgery. Ruth A

Originally Posted by KJCA

What is the name of the doctor in France, where is he located, and how can I find out more ? Thanks.

Originally Posted by GJZH

Louise,

I too suffer with Tarlov cyst and have had the surgery with Dr. Long at Johns Hopkins in Baltimore. If anyone would like to ask me questions about the surgery please do not hesitate to contact me...

Originally Posted by KJCA

What is the name of the doctor in France, where is he located, and how can I find out more ? Thanks.

Originally Posted by GJZH

Tarlov Cysts: Are They Symptomatic?
Dynamic Chiropractic, Jan 29, 2006 by Pate, Deborah
The etiology of perineural sacral cysts (Tarlov's cysts) is not well-understood. The best description is that they are a dilatation of arachnoid and dura of spinal posterior nerveroot sheath, containing nerve fibers. They are most commonly diagnosed on MRI. These lesions have been estimated to affect 4.6 percent to 9 percent of the adult population1 and are generally reported as incidental findings on CT or MR studies. It was originally thought that all Tarlov cysts were asymptomatic, but a small percentage can cause progressive painful radiculopathy. The statistical data are very inconsistent; I have seen reports of as high as one-fifth of Tarlov's cysts causing some symptoms.2

These cysts can occur anywhere in the spine, but the most common areas affected are the S-2 and S-3 nerve roots. Sacral cysts have been reported to cause sacral radiculopathy, hip, leg or foot pain, perineal pain, paresthesias, and bowel or bladder dysfunction. Symptoms can mimic a disc herniation.

There are many variations of Tarlov cysts. Some can become quite large - up to 6 cm. They can be multiple. As you might suspect, there is some confusion over the precise definition of Tarlov cysts and how they are different from other spinal cysts. The distinctive feature of the Tarlov perineurial cyst is the presence of spinal nerve root fibers within the cyst wall or cyst cavity itself.

The nomenclature becomes daunting because the etiology of this lesion is still not agreed upon and unfortunately, there is no consensus on the optimal management of symptomatic Tarlov cysts. The good news is that most remain asymptomatic.

Treatment recommendations for symptomatic Tarlov cysts vary widely depending on the symptoms. They can be drained of CSF; in fact, draining the CSF also can be a useful diagnostic tool to determine if symptoms are indeed due to the Tarlov cyst. There are two ways of draining these cysts: one is via a lumboperitoneal shunt; the other is percutaneous drainage. Unfortunately, the cysts re-form over time with percutaneous aspiration.

Surgical treatment involves complete cyst removal and excision of the affected posterior root and ganglion. As you can imagine, there are several ways of doing this complete excision, which I will not describe here.

Originally Posted by hummerm

I've had two surgeries in the last 12 months, and my last MRI shows a Tarlov Cyst. Doctor's tell me "it's nothing to worry about", but my pain is increasing to the point I can barely get out of bed. I take pain medicine every day, but nothing is helping. My last surgery was in December, and things have steadily declined. The pain I'm having is the same as the herniated disc. I've always been incredibly healthy and active. I'm at wits end and some days don't think I can go on any longer. I have a 2 year old son that I can't even play with many days, and I don't know where to turn. Any suggestions? I tried Johns Hopkins, but Dr. Donlin Long's office referred me to another physician there for a spinal cord stimulator. I can do that anywhere, I want to be sure the cyst is nothing to worry about???

Originally Posted by hummerm

I've had two surgeries in the last 12 months, and my last MRI shows a Tarlov Cyst. Doctor's tell me "it's nothing to worry about", but my pain is increasing to the point I can barely get out of bed. I take pain medicine every day, but nothing is helping. My last surgery was in December, and things have steadily declined. The pain I'm having is the same as the herniated disc. I've always been incredibly healthy and active. I'm at wits end and some days don't think I can go on any longer. I have a 2 year old son that I can't even play with many days, and I don't know where to turn. Any suggestions? I tried Johns Hopkins, but Dr. Donlin Long's office referred me to another physician there for a spinal cord stimulator. I can do that anywhere, I want to be sure the cyst is nothing to worry about???