Thread: Advice needed
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Old 07-10-2014, 11:51 AM
Kathryn1 Kathryn1 is offline
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Join Date: Nov 2013
Posts: 22
10 yr Member
Kathryn1 Kathryn1 is offline
Junior Member
 
Join Date: Nov 2013
Posts: 22
10 yr Member
Default Tarlov cysts

Quote:
Originally Posted by msb1302@ntlworld.co View Post
I have been suffering with pain in right buttock, down leg and in groin, cant sit down for too long as when i first sit down it feel likes a hot poker up bottom, cant stand up for too long, my hip aches all the time. This has been for 8 years when I was pregnant with my little boy. I have terrible nerve pain and also struggle to walk most days.

I have also weakness in right arm and constant numbness and pins and needles.
This has been last 4 years.

I also have a swollen right foot for the last 4 years.

I have been fighting with the NHS to find out whats wrong. Frustratingly so.

I have now been diagonised with large (2cm 8 3cm) Tarloc Cysts surrounding the upper sacral nerves on the right.



They said on MRI report that it is conceivable that they may be causing pressure on the right lumbosacral plexus, althought this would be unusual. There is nothing else on MRI of pelvis, lower back, foot and head apart from this.

I am at my wits end and frustrated.

I have been referred to a Orthopeadic surgeon. I dont think I need him and need a neurologist instead.

Any advice??
The MRI report suggests pressure on the right lumbosacral plexus and the Tarlov cysts are in this area, a neurologist is probably the next step to consult.
The neurologist can do EMG, NCS, (motor and sensory tests) to determine where the pain and symptoms. Also the Tarlov Cyst Foundation can also direct you to the next step. I have 5 Tarlov cysts in the sacral spine and am considering surgery in the future. Dr. Frank Feigenbaum, expert in Tarlov cysts, suggested this to me. I am seeing a new neurologist end of July to update my tests and MRI. I am not taking surgery lightly and it is a major decision to decide.
I am sorry for your frustration. Best of luck.
Kathryn1
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