Wheels in my head are Spinning!?

[LindseyD]

Hey everybody, I am awaiting an emg and mri in January. As Ive explained before my symptoms started with interstitial cystitis problems which I still have.. Then vaginal ache/tinglyness, and now a lot of pain primarily on my left thigh. I know Tarlov Cysts can cause such thigh pain, but I was just wondering do any of you have a lot of thigh pain on the back of your thighs with your PN?
Or would thigh pain not sound like a PN problem?
Hopefully tests will give some type of diagnosis. I really hope and pray its not tarlov cysts.

[Karyn]

Hi Lindsey,

As a PNE and Tarlov Cyst Disease patient, I'm hoping I can help clarify some of your questions:

I know Tarlov Cysts can cause such thigh pain, but I was just wondering do any of you have a lot of thigh pain on the back of your thighs with your PN?

The pudendal nerve innervates the pelvis only. It does not innervate the thighs or any of the lower extremities. Tarlov Cysts are actually your sacral nerves (S1 - S4) which have filled with CSF (cerebral spinal fluid) at the nerve root, causing compression throughout the entire nerve and all of it's branches. The PN is a BRANCH of the sacral nerve roots. It's common for TCD patients to have symptoms with the PN.

Hopefully tests will give some type of diagnosis.

Diagnostics for TCD are much more clearly defined than PNE diagnostics. A standard pelvic MRI will show the presence TC's. They're either there, or their not. Unfortunately, most radiologist don't report the pathology. When they do report it, they note it as in incidental finding of no clinical significance.

Regarding the EMG - I was informed by Dr. Feigenbaums nurse that they used to require patients have an EMG. They no longer do this anymore. The reason given was that they were consistently finding no abnormalities reported with this test. When I pressed for further information about this, the response I got was that the EMG will pick up on SPINAL abnormalities, but not sacral.

Best wishes with your tests. Please let me know if there's anything I can do to help!

Kind regards,
Karyn

[nyt]

In regards to pain in the back of the thighs from PN is usually a secondary symptom. Many patients with PN end up with piriformis syndrome. The sciatic nerve runs underneath the piriformis muscle and in some patients the sciatic nerve runs between the piriformis muscle. In either case when the piriformis spasms it compresses the sciatic nerve which causes the pain or neuropathic symptoms down the back of the leg.

[LindseyD]

Thank you both for your responses. Karyn, I messaged you.

Nyt,
how do you treat compressed nerves?? Or is it something you mainly take medicine for to help with the symptoms? What happens if your nerves on conatantly being compressed? Will a mri of the spine show much? Im having an emg of thr left leg.

[Lilas]

Hi!
The more I read the more astounded I feel about modern medicine, diagnosis and treatmentl.
Two years ago, a neurosurgeon sent me for an MRI (won't go into past history). Apart from the repeated diagnosis of two disk hernias pressing on nerve roots on the left lower back, he diagnosed (and showed me on the screen) a cyst pressing on the right-hand side nerve roots L5-S1. I was left speechless because had complained of new pain on theright lower back and all doctors before had ignored this. He immediately said this is not operated on... For some inexplicable reason doctors tend to ignore findings they don't know how to treat (same as my dislocated coccyx?).
It seems it is left for the suffering patient to work extremely hard to find solutions and support.
About treatment with infra-red light: two years ago a Feldenkreis expert offered to try this on me. I ignored it because had never heard of it before and thought he was looking for money. Just goes to show there is always something new to learn and one has to be humble and open to new ideas.
Ready for ideas and advice...
Mia Lilas

[wannagetbetter]

NYT - from your December 2014 posting -

Why do most patients with PN end up with piriformis syndrome?