NeuroTalk Support Groups - Tarlov Cysts: Are They Symptomatic?

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- - Tarlov Cysts: Are They Symptomatic? (https://www.neurotalk.org/tarlov-cyst/2887-tarlov-cysts-symptomatic.html)

Quote:

Originally Posted by GJZH (Post 139374)

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...

I was diagnosed with a Tarlov Cyst 3 years ago and have been able to manage. I am now ready to contact Dr. Long. Please tell me about your experience.

Jay

Quote:

Originally Posted by GJZH (Post 139374)

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

Quote:

Originally Posted by ruthA (Post 405939)

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

I had surgery on the Tarlov Cysts, but also have very extensive spinal problems as you can tell by my signature. I do not think the Tarlov cyst was my problem and have since been told that by other surgeons. I have had a fusion of L1 to S1 since the surgery on the Tarlov cyst and feel that surgery has done more to help me. Some people are helped by surgery on the Tarlov cyst, while others do not get any relief. I feel it really depends on whether or not you have a communicating cyst. Mine was not and probably should not have been operated on to begin with...hence the surgery probably did not do much in helping me.

Quote:

Originally Posted by KJCA (Post 149977)

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

http://www.tarlovcyst.org/index.php?...id=33&Itemid=1

Dr. Maitrot's new operation
Doctor Daniel Maitrot, who heads the neurosurgery department at The University Louis Pasteur in Strasbourg, is testing a highly innovative surgical operation for the treatment of Tarlov cysts. The first patient is a French physician.

Doctor Christine Lauffenburger’s Story

Christine Lauffenburger, MD was born in France on February 22, 1950. She obtained her medical license and became a general practitioner with the national health service of the French government.

Christine was 55 years old when galloping on her horse she felt something wrong in her lower back. She began to have pudendal nerve, thigh (internal side) whole pelvis area and then sciatic pain. She was also suffering from cramps, tendonitis, erratic pains in the hip and buttocks, bladder and bowel problems, and osseous (bone) pain.

One year later, she saw a general practitioner who prescribed a CT scan. The exam showed a strange mass and he prescribed an MRI on which several bilateral Tarlov cysts were discovered.

She had an appointment with Doctor MAITROT who asked for several other exams that showed neurological disorders: urodynamics, EMG, and myelography.

She waited several more months and had FGI at Strasbourg CHU, which gave relief for six weeks only. Doctor MAITROT proposed another procedure and after having waited a little, in June 2006, she became the first patient to have the new Tarlov cyst operation invented by Dr. MAITROT.

Christine reports “50% relief after 1 month and was okay after 3 months. 6 months later, she had recovered to 90% (10% of the remaining pain is due to some other spine problem)”. After 8 months she does 1 hour of sports each day and is generally intensely active,

Quote:

Originally Posted by GJZH (Post 139374)

Hi, could you tell me more about treatements at HJ in Baltimore ?
What about treatements of Dr. Long ?
Thanks in advance for your reply.

Renny

Quote:

Originally Posted by KJCA (Post 149977)

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

I think is Dr. Daniel Maitrot in Strasbourg at CHU (Centre Hospitalier Universitaire).

Looking for a surgeon in So. California....

Quote:

Originally Posted by GJZH (Post 20826)

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.

Hello,

I am hoping you can help me. In 2007 I injured myself at work and created 2 peri-neural cyst. I have a large (by my standards..) cyst at T-8 to T-10 that communicates with another cyst at T-6.
I live in southern California and need to find a (Worker's Comp) surgeon who will be able to help get me out of my pain.
I am hoping after reading your article that you might be able to give me the names of some good surgeons to talk to.

Thanks,

Kathy Heim

Why not investigate with Dr. Feigenbaum in Kansas City? He treated two of my cysts one week ago with surgical approach. He is best in nation and specializes in this area. The number: 1-816-363-2500

Quote:

Originally Posted by hummerm (Post 117527)

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???

sorry to hear of your misery. i too suffered 24/7 for i yr. before having mri that showed a 7 and 11 cm. tarlov cyst. neuroligist said they weren't causing my pain but it was coming from sacrum area. it was total misery. when my second grandchild was born i could have never carried her across the room. i ended up getting disability for the tarlov cyst and the emotional mess i was from my life falling apart. time not working finally got my pain under control. i know take neurontin twice a day and 8 yrs. later it i am still functioning and working minimal. best of luck to you.:grouphug:

Call this Doctor

Quote:

Originally Posted by hummerm (Post 117527)

Dr. Frank Feiganbaum who recently moved from Kansas to Texas has developed a procedure for the cysts. People from all over the world come to see him and he will be going out of the country this summer to treat others who can not come to the US:)