[msb1302@ntlworld.co]

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??

[Lara]

Hi,
I just wanted to welcome you to the NeuroTalk Support Groups.
I'm really sorry that you're dealing with so much pain for so long and the added frustration in getting a diagnosis.

I can't help with your questions, I'm sorry, but I'm sure other forum members will be able to offer their suggestions.

take care.

[Kathryn1]

Originally Posted by msb1302@ntlworld.co

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

[J for Timy]

Originally Posted by msb1302@ntlworld.co

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??

We have just been to a neurosurgeon who ( after 5 years of pain) says that it is a Tarlov Cyst and it can be removed but there are risks. Timy is 50 and can not stand the pain any more. She is scheduled for surgery in Dec. 2014. I agree no orthopedic.
J for Timy