An article by Donlin M. Long, MD PhD

TGarison · 04-22-2008, 02:37 PM

Dear Dr. Long: You were referred to us by a neurosurgeon in Boston. My 24-y.o. daughter has Marfan Syndrome and numerous perneural cysts with the largest being at the lumbo-sacral area. Over the past year, she has become nearly incapacitated with back and leg pain - primarily leg. How does one determine if the pain is being caused by the cyst or by another, possibly more benign problem? (Physical therapy and chiropracty have exacerbated the problem.) Her MRIs show only the cysts and no significant disc disease. She has an area of erosion of a vertebral process from the pressure of the cyst. Although she has a Chiari Type I, she has no syringomelia. What testing modalities are used to differentiate for the cause of pain? It would seem that the only way to know for sure is to drain the cyst percutaneously with CT guidance and see if the symptoms disappear. However, if entry into the cyst is going to be made, wouldn't it make sense to do the whole procedure to avoid the necessity for re-entry? We are at the point where we have to figure out what is causing her symptoms in order to know what to do next. Can you please advise? Thank you for your time. Tricia

concernedwife · 11-29-2008, 12:04 PM

Hi Tricia, I see you posted a question to Dr. Long. Just wondering if you ever heard back from him. We called his office and have not had a reply as yet. My hubby has a 6.7cm Tarlov cyst. We have been to four doctors and finally found one to do the surgery but he has only done one is all his career as a neurosurgeon. We are looking for a second opinion. Please let me know if you heard from him and if he was able to help you. It is so hard trying to get someone to help with this problem.

Thanks! Betty

Quote:

Originally Posted by TGarison

Dear Dr. Long: You were referred to us by a neurosurgeon in Boston. My 24-y.o. daughter has Marfan Syndrome and numerous perneural cysts with the largest being at the lumbo-sacral area. Over the past year, she has become nearly incapacitated with back and leg pain - primarily leg. How does one determine if the pain is being caused by the cyst or by another, possibly more benign problem? (Physical therapy and chiropracty have exacerbated the problem.) Her MRIs show only the cysts and no significant disc disease. She has an area of erosion of a vertebral process from the pressure of the cyst. Although she has a Chiari Type I, she has no syringomelia. What testing modalities are used to differentiate for the cause of pain? It would seem that the only way to know for sure is to drain the cyst percutaneously with CT guidance and see if the symptoms disappear. However, if entry into the cyst is going to be made, wouldn't it make sense to do the whole procedure to avoid the necessity for re-entry? We are at the point where we have to figure out what is causing her symptoms in order to know what to do next. Can you please advise? Thank you for your time. Tricia

[/B] [/B]

Jomar · 11-30-2008, 12:43 AM

Just to clear up any confusion - the original post was not made by Dr Long himself, it was one of his articles posted by a member.

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