Chris,

What are the results of your MRI? If you are having bowel and bladder problems you should see a spinal surgeon stat, especially if you think they are related in any way to your spinal problems. You might be suffering from Cauda equina....




Gloria

Hi Annette,

I can't believe your description of this problem we share. Your story could be mine completely. I am very sorry you have suffered so long. I have too. I am seeing Dr. Tarlov in Burlington, MA on July 20. Hope I can hold out that long. The burning in my feet is very uncomfortable, and the all the rest of the symptoms are mine, as well. Please respond. Gail

Hello,
I was recently diagnosed with a tarlov cyst at S3. I had read that scientist believe that these maybe caused by the herpes simplex virus. I had chicken pox twice as a child and I have had shingles 3 times. Has anyone else had this problem? Thanks

Also I have been having some swollen and painful joints and I am being tested for lupus and rheum arthritis. Hopefully I will get results this week but after reading some of the posts I am thinking maybe it is all related to the tarlov cyst. Of course I am being told that the cyst is not causing my pain that I have degenerative disc disease and permanent nerve damage.

Karen,

I do not think the Tarlov cyst has been associated with painful swollen joints. The painful swollen joints seem more like some form of arthritis. Just to let you know .... I had surgery on my Tarlov cyst at S2 in 2005. I did not have the results that others have had and do not recommend the surgery.

You will find that many neurosurgeons and orthopedic surgeons are quick to tell you that operating on the Tarlov cyst will not help you. Some people claim to be helped from their surgeries. I had a laminectomy at the same time as the surgery on the Tarlov cyst. I found no relief with the surgery. This is just my experience while others claim to be cured from the surgery....We all have different experiences and of course we all have very different problems. I have so much damage in my spine from arthritis that I think a simple surgery on the Tarlov cyst would never provide much relief for me. If this is the only problem you have with your spine it very well may be the cure for your problems, but it was not for me and for others who went this route.

I have had several back surgeries and am only 41. I have had laminectomy, disectomy and then had to have a csf leak repair surgery done. I have a lot of pain and am very discouraged with the physicians that I have seen so far. I have been in pain for several years since my last surgery and it has brought me to the point of perm nerve damage. None of the Dr's that I have seen really know about the TC and I keep being told that it is not the cause of my pain. If it is't that is great but what is. I was tested for autoimune disease and results came back negative.

Karen,

Can you post the results of your MRI or CT Scan? Where are your Tarlov cysts located? The problem with the Tarlov cyst is that most docs only know what they have read about them in a text book. For that reason they tell patients that they are not symptomatic. In most cases, they probably are not. If you do not have a communicating cyst it probably is not a source of your pain. Communicating meaning it fills and empties with fluid. You would only know that by going through testing at Hopkins. I think they are still doing testing for that at Hopkins.

Though I have not had a good outcome with the surgery for the TC I would not discourage anyone from moving forward with the surgery. I think Donlin Long at Hopkins is having the most success with his surgery and you would do best to contact him. I, at one time, told people to contact both him and Henderson at Georgetown, but I do not think Henderson is having the same success as Long. Of course, I have not been reading any data lately on the surgeries.....I have to go refresh and look at the data...
so you might want to look at both docs....

The problem with back surgeries is that they are only as good as the doctor performing them. I have been very fortunate in that I have had excellent surgeons. I used Dr. Fabien Bitan for my lumbar fusion, L1 to S1, and have had excellent results. I am also fused in the cervical spine and though I am now having problems with my cervical fusion, I have no regrets. Dr. Bitan did not do that fusion though he may do some corrections for me.....

You may be in pain because you have failed surgeries....

Hi
Did you receive any reply to the above. I am on a desperate search for relief from agonizing pain. Where did you read about scientists believing that tarlov cysts may be caused by the herpes simplex virus? I have been in excrutiating pain for months. I will not detail the medical journey here but it has been extensive and hopeless at this point. A tarlov cyst showed up on one of my MRI's and was on the S3 but "inconsequential". All of the symptoms noted for tarlov cysts are dead on for me. I have just had an extensive bout of shingles (6 weeks) As well I am very susceptible to very bad cold sores.
If anyone has further information on the herpes simplex connection could you please let me know.
Thanks

Hi there,


y message was a while back in February, in fact). My story is like yours, all the symptoms of Tarlov cyst are relative to me, as well, including the herpes simplex virus. I haven't had cold sores for years, but the virus stays in your system. I have been very fortunate to be directed to Dr. Tarlov, the grandson of the original Dr. Tarlov who is practicing at the Lahey Clinic in Burlington, MA. I have an appointment with him on July 20. In the meantime, I am biding my time and praying he will have the right answers for me. Gail

Hello Gail,
how did your surgery go? Please update us if you are still around here. Would love to hear your story,
blessings,
chris