Health Organization for Pudendal Education

Hi Lise,
I agree with NYT - please don't dismiss the TC.
The reason why I asked if Dr. Conway was aware of this is because I am also a patient of his.

heidiloft wrote:I actually sent a copy of my MRI report to him.He felt it was an incedental finding

Yes, he originally told me the same thing when I pointed out the pathology on three different MRI reports. However, he seems to think differently, now. He's had several patients consult with Dr. Feigenbaum (Dallas, TX), who I am awaiting surgery with.

heidiloft wrote:the cyst is probably not helping things

It's quite possible that the cyst is causing your symptoms.

Just a suggestion - you may want to hold off on the nerve blocks and the PN diagnosis until you get more information about the TC's. I also suggest you visit the Tarlov Cyst Disease Foundation: http://www.tarlovcystfoundation.org/home0.aspx.

heidiloft wrote:I am however,going to have it looked at by a surgeon in Ottawa

To the best of my knowledge, there are no longer any surgeons in Canada who surgically treat these cysts. Do you mind if I ask who you're consulting with?
Just a couple more questions:
In addition to the pelvic pain, do you have pain in the lower extremities as well?
Did the radiologist who reported your cyst record a measurement?
Blessings,
Karyn

Hi Karyn...I am so sorry...for some reason I did not see your other posts which had other questions referring to the cyst that was found on my MRI.I am still waiting to be seen by a neurosurgeon here in Ottawa Canada to see about the cyst.I am wearing a fentanyl patch and without it,yes I would have severe pain in the lower extremeties.I am involved with a wonderful physio and am trying to manage the neuropathic pain which is mostly in the vaginal area.I feel as though each day is an uphill climb but I am doing my best.Dr.Conway told me to find a physio and try to get into the neurosurgeons in Toronto.Are you thinking I should be trying to see someone else because of the cyst?I would be so glad to hear back from you Karyn.Blessings,Lise

Hi Lise,

heidiloft wrote:Are you thinking I should be trying to see someone else because of the cyst?

Yes. Speaking from experience, I can't encourage you enough to get a firm diagnosis on this. The reason I'm suggesting this is because: if it IS the TC's causing your pain, all the PT in world isn't going to help. Your sacral nerves are still going to be filled with CSF and you're still going to have sacral nerve root compression; causing you pain within the distribution of the affected nerves. This isn't something you want a PT to treat. What neurosurgeon in Ottawa are you waiting to consult with?
Have you checked out the Tarlov Cyst Disease Foundation, yet? They're an excellent resource for information about TC's and which surgeons are best knowledgeable about the condition.
With hugs and blessings,
Karyn