advertisement
Reply
 
Thread Tools Display Modes
Old 01-19-2009, 03:27 PM #1
AcheyBreakyNecky AcheyBreakyNecky is offline
Junior Member
 
Join Date: Jan 2009
Posts: 13
15 yr Member
AcheyBreakyNecky AcheyBreakyNecky is offline
Junior Member
 
Join Date: Jan 2009
Posts: 13
15 yr Member
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.
AcheyBreakyNecky is offline   Reply With QuoteReply With Quote

advertisement
Old 01-19-2009, 04:10 PM #2
AcheyBreakyNecky AcheyBreakyNecky is offline
Junior Member
 
Join Date: Jan 2009
Posts: 13
15 yr Member
AcheyBreakyNecky AcheyBreakyNecky is offline
Junior Member
 
Join Date: Jan 2009
Posts: 13
15 yr Member
Default

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.
AcheyBreakyNecky is offline   Reply With QuoteReply With Quote
Old 05-11-2009, 02:23 PM #3
GAIL REEVE GAIL REEVE is offline
New Member
 
Join Date: Feb 2009
Location: Ft. Myers, Florida
Posts: 5
15 yr Member
GAIL REEVE GAIL REEVE is offline
New Member
 
Join Date: Feb 2009
Location: Ft. Myers, Florida
Posts: 5
15 yr Member
Default

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
GAIL REEVE is offline   Reply With QuoteReply With Quote
Old 08-26-2009, 07:54 PM #4
gongshow22 gongshow22 is offline
New Member
 
Join Date: Aug 2009
Posts: 3
15 yr Member
gongshow22 gongshow22 is offline
New Member
 
Join Date: Aug 2009
Posts: 3
15 yr Member
Default

COLOR]
Quote:
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.
gongshow22 is offline   Reply With QuoteReply With Quote
Old 03-02-2012, 12:23 AM #5
trista trista is offline
New Member
 
Join Date: Mar 2012
Posts: 3
10 yr Member
trista trista is offline
New Member
 
Join Date: Mar 2012
Posts: 3
10 yr Member
Default

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.
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.
trista is offline   Reply With QuoteReply With Quote
Old 03-21-2012, 09:20 PM #6
kimreynolds00 kimreynolds00 is offline
New Member
 
Join Date: Mar 2012
Posts: 5
10 yr Member
kimreynolds00 kimreynolds00 is offline
New Member
 
Join Date: Mar 2012
Posts: 5
10 yr Member
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!
kimreynolds00 is offline   Reply With QuoteReply With Quote
Old 03-22-2012, 09:54 PM #7
linda elliott linda elliott is offline
Junior Member
 
Join Date: Mar 2012
Posts: 7
10 yr Member
linda elliott linda elliott is offline
Junior Member
 
Join Date: Mar 2012
Posts: 7
10 yr Member
Frown

Quote:
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.
linda elliott is offline   Reply With QuoteReply With Quote
Old 03-25-2012, 12:03 AM #8
linda elliott linda elliott is offline
Junior Member
 
Join Date: Mar 2012
Posts: 7
10 yr Member
linda elliott linda elliott is offline
Junior Member
 
Join Date: Mar 2012
Posts: 7
10 yr Member
Red face

Quote:
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.
linda elliott is offline   Reply With QuoteReply With Quote
Old 04-12-2012, 09:51 PM #9
3tarlov 3tarlov is offline
New Member
 
Join Date: Apr 2012
Posts: 5
10 yr Member
3tarlov 3tarlov is offline
New Member
 
Join Date: Apr 2012
Posts: 5
10 yr Member
Default tarlov

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.
3tarlov is offline   Reply With QuoteReply With Quote
Old 04-14-2012, 12:04 AM #10
amy93stang amy93stang is offline
Junior Member
 
Join Date: Apr 2012
Posts: 10
10 yr Member
amy93stang amy93stang is offline
Junior Member
 
Join Date: Apr 2012
Posts: 10
10 yr Member
Default

I had surgery Dec 5th 2011 with Dr. Feigenbaum. How r u doing??? I still have pain not as bad.
amy93stang is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
new Tarlov Cyst diagnosis nanarose New Member Introductions 12 05-25-2010 06:50 PM
Tarlov Cyst Verdala New Member Introductions 1 10-20-2007 01:36 PM
tarlov cyst KJCA New Member Introductions 2 09-21-2007 12:48 AM
new Tarlov Cyst diagnosis nanarose Tarlov Cyst 1 08-22-2007 08:50 PM
Tarlov cyst Ablation GJZH Tarlov Cyst 0 10-12-2006 11:37 AM


All times are GMT -5. The time now is 07:07 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.