Finally Diagnosed W/ Underlying Disease &CAUSE of my PN! :D

[ChiMommy]

Hello Everyone,

I haven't posted on here in a few months. I have gone through an up and down roller coaster ride with the medical industry.

To give you a little background, I have had PN symptoms for 6-7 years and I was officially diagnosed with PN in July or August of this year. I had several other Sx's going on at the same time, tailbonw pain, sacral swelling and pain, bilateral sciatica and urinary retention.


I got an MRI of my sacrum and coccyx after my PM Dr said it was fractured (it wasn't). The MRI did however show 2 Tarlov Cysts ( marked as incidental findings)

Tarliv Cysts are rare and considered to be asymptomatic most times by all Dr's. Some Dr's refuse to believe they ever cause symptoms, which they can and do in some instances. After doing some research I realized my symptoms matched exactly! I sought out a specialist for Tarlov Cysts and he confirmed it was causing all of my symptoms.

I'm currently waiting for a diagnostic nerve block to see if only one cyst is symptomatic or if both are , then I will schedule surgery.

Lots of people who have Tarlov Cysts seem to also have PN, as the cysts are part of the nerve root sheath and typically grow on the s2 & s3 nerve roots.

Never give up looking! You know your body best and if something is rong. Don't ever let Dr's discourage you from seeking the treatment you deserve.

Kim

[Violet M]

Hi Kim,

Thank you for sharing that information with us. I hope this means you will be able to get the right treatments now and be able to get your pain under control. Was it difficult getting in with the specialist who confirmed all of this for you?

Violet

[Ray P.]

Please keep us posted.
I wish you the best.

[ChiMommy]

Violet,

It was not hard to get into Dr. Frank Feigenbaum. He was however booked out 8 weeks. He also does free phone consultations, if you send him your MRIs. The free consultation has a 4-6 month wait, but it's free and you don't have to travel to Dallas.

He runs the Tarlov Cyst Institute and is one of a very few nerosurgeons who performs the delicate surgery. He has done over 1,700 of these.

I hope this helps someone, if I can answer any questions, please let me know.

Thank You Violet for running this board and helping patients connect!

Kim

[Violet M]

Thanks, Kim. I am hoping to hear some good news from you with happy ending results one of these days.

Violet