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I too have a Tarlov Cyst

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Unread 01-19-2009, 03:27 PM   #1
AcheyBreakyNecky
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Default I too have a Tarlov Cyst

This is so exciting to find others with the same,,,,,,,,Among other spine issues, I have a Tarlov Cyst at the S2, Three surgeons I have been to say this is NOT the cause of pain, and that Tarlov Cyst do not cause problems, they are just incidental findings. I had one neorologist say yes they can cause issues, and wrote me scripts for nerve pain meds, which help somewhat. I look forward to reading many post here, and please forgive me if I ask too many questions, or if I ask questions that have been asnwered as I am new here, and still finding my way about, and how to use this site.
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Unread 01-19-2009, 04:10 PM   #2
AcheyBreakyNecky
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I just wanted to add here, that I suffer from burning sensations on my buttocks, and now have a new symptom, pain in hips, and am getting very frusterated and at a loss of what to do. Seems most doctors don't even want to talk about a Tarlov Cyst, as soon as you say you have one, they say, ya, and that is not asymptomatic, grrrrr, but can't tell you why you are in pain, or burning,,,, Please, anyone in Boston area with a doc who is helping them, let me know.

Also, I would like to know what ppl are taking for the burning, I have lidocaine patches, nortriplyne and gabapentin, but I still have burning, though not as bad, it still there, interferring with my life, it hard when all you can feel is BURNING. Any ideas, sugestions greatly appreciated.
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Unread 05-11-2009, 02:23 PM   #3
GAIL REEVE
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Quote:
Originally Posted by AcheyBreakyNecky View Post
I just wanted to add here, that I suffer from burning sensations on my buttocks, and now have a new symptom, pain in hips, and am getting very frusterated and at a loss of what to do. Seems most doctors don't even want to talk about a Tarlov Cyst, as soon as you say you have one, they say, ya, and that is not asymptomatic, grrrrr, but can't tell you why you are in pain, or burning,,,, Please, anyone in Boston area with a doc who is helping them, let me know.

Also, I would like to know what ppl are taking for the burning, I have lidocaine patches, nortriplyne and gabapentin, but I still have burning, though not as bad, it still there, interferring with my life, it hard when all you can feel is BURNING. Any ideas, sugestions greatly appreciated.
There has been a lot of time since you posted this, but I am going to the Lahey Clinic in Burlington, MA to see Dr. Tarlov, grandson to the original Dr. Tarlov. My appointment is scheduled for July 20, 2009. Hope he can help me. Gail
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Unread 08-26-2009, 07:54 PM   #4
gongshow22
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Originally Posted by GAIL REEVE View Post
There has been a lot of time since you posted this, but I am going to the Lahey Clinic in Burlington, MA to see Dr. Tarlov, grandson to the original Dr. Tarlov. My appointment is scheduled for July 20, 2009. Hope he can help me. Gail

How did you make out there? I just had my Tarlov Cyst aspirated and filled with fibrin glue, but I'm in a LOT more pain.
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Unread 03-02-2012, 12:23 AM   #5
trista
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Originally Posted by AcheyBreakyNecky View Post
This is so exciting to find others with the same,,,,,,,,Among other spine issues, I have a Tarlov Cyst at the S2, Three surgeons I have been to say this is NOT the cause of pain, and that Tarlov Cyst do not cause problems, they are just incidental findings. I had one neorologist say yes they can cause issues, and wrote me scripts for nerve pain meds, which help somewhat. I look forward to reading many post here, and please forgive me if I ask too many questions, or if I ask questions that have been asnwered as I am new here, and still finding my way about, and how to use this site.
Yep... Can you believe it? I had a well-respected neurosurgeon tell me that these cysts were "hogwash"! Many of them have never been educated or refuse to become involved with Tarlov cysts because they are a little difficult to treat. Check in with Dr. Feigenbaum in Kansas City. His specialty is Tarlov cysts! I am one week post-op from him treating two of mine.
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Unread 03-21-2012, 09:20 PM   #6
kimreynolds00
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Default Did you try anything before surgery

I too have a Tarlov Cyst and had the fibrin glue injection done at John Hopkins on March 8th. The pain subsided for about 5 days and now is back and gradually increasing. I was told was a 65-70% success rate, and live only 3 ours from KC where Dr. Fiegenbaum. I was told had to be three months before reconsider the fibrin glue procedure again if still in pan. I really don't want to go 3 months with the pain and narcotics make me sick. Can you share your experiences and what all you tried! Thanks so much!
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Unread 03-22-2012, 09:54 PM   #7
linda elliott
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Originally Posted by trista View Post
Yep... Can you believe it? I had a well-respected neurosurgeon tell me that these cysts were "hogwash"! Many of them have never been educated or refuse to become involved with Tarlov cysts because they are a little difficult to treat. Check in with Dr. Feigenbaum in Kansas City. His specialty is Tarlov cysts! I am one week post-op from him treating two of mine.
it seems a common thing for doctors to declare tarlov cysts not what's causing the pain. in 2003 when i was at my wits end with pain that's what i kept hearing. i do believe many dr.s don't have a clue about them. i was in the er many times crying my eyes out and noone seemed to understand.
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Unread 03-25-2012, 12:03 AM   #8
linda elliott
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Originally Posted by linda elliott View Post
it seems a common thing for doctors to declare tarlov cysts not what's causing the pain. in 2003 when i was at my wits end with pain that's what i kept hearing. i do believe many dr.s don't have a clue about them. i was in the er many times crying my eyes out and noone seemed to understand.
i just obtained a copy of my mri report from 2003.it says11mm tarlov cyst posterior s2 and 7mm cyst posterior to the right aspect of s2 vertebreal body.i was in excrutchiating pain with these. does anyone know if these would be considered big cyst.
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Unread 04-12-2012, 09:51 PM   #9
3tarlov
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Quote:
Originally Posted by AcheyBreakyNecky View Post
This is so exciting to find others with the same,,,,,,,,Among other spine issues, I have a Tarlov Cyst at the S2, Three surgeons I have been to say this is NOT the cause of pain, and that Tarlov Cyst do not cause problems, they are just incidental findings. I had one neorologist say yes they can cause issues, and wrote me scripts for nerve pain meds, which help somewhat. I look forward to reading many post here, and please forgive me if I ask too many questions, or if I ask questions that have been asnwered as I am new here, and still finding my way about, and how to use this site.
My neurologist after 4 MRI'S ref. me to a neurosurgeon that specializes in the procedure.
They are incidental findings they find them when looking for some other cause of pain and numbness.
I just had surgery on Mar. 6 and the pain I had off and on for 17 yrs. has gone. My legs are really achey at times but I'm just 6 weeks post op.
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Unread 04-14-2012, 12:04 AM   #10
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I had surgery Dec 5th 2011 with Dr. Feigenbaum. How r u doing??? I still have pain not as bad.
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