Almost 8 years of pain - Pudendal Neuralgia? IC? PPS?

[starling5771]

Thank you Violet for responding

My son is 3 and a half. Very healthy and delivered at full term via emergency c section. I have had many issues to deal with since the car accident, while 7.5 months pregnant. I injured my neck, knee, and basically my entire pelvis. I have had four surgeries on other problems, that are still needing more surgeries. I was finally just diagnosed with PN and a Tarlov cyst. I went to maybe 15 Dr's before a diagnoses last week. I have started the PN and Oturator blocks, and wow it hurts much worse. They told me it would. I had so hoped for the right Dr. to have some miracle surgery, but it is looking like more long and lengthy procedures are in my future.

How do you get through your day?

Has anything helped you?

I now have switched most of my medical care two States away, but they seem more equipped to handle these problems. Here in this State of NC, it does not seem like anyone really treats these things.

I am really glad to meet you. I hope to hear again from you. I would also love any tips about using this site, or any other great sites for research you have come across

[Violet M]

So it sounds like you have been battling this pain for quite awhile and at the same time trying to take care of a toddler. That would be a daunting task.

So, did the PN and obturator blocks help for a few hours? Usually they have an anesthetic in them that wears off after a few hours. They also typically have a steroid that kicks in several days later and can cause a flare-up in symptoms for several weeks.

I used a lot of ice and heat in addition to lying down but I would not sugar coat it and say it was easy. It was a struggle to survive each day. Yours is a complex situation with multiple injuries which makes it even more difficult. I'm guessing you have probably already tried PT and pain medications.

To use this site you can use the search bar in the upper right corner to search on particular topics or providers, or you can just browse the forum by topics. I guess there is tons if info to wade through so sometimes just asking the veteran forum members questions is a good strategy. Or you can read the info on the main website at pudendalhope.org.

Violet

[starling5771]

Thank you for your reply and words of encouragement

I am so sorry you also have suffered

It is amazing to me how a medically trained professional can
Miss so much obvious information

The shot helped with the numb part. And yes am
In huge flare

I have thought about dr Elkwood, whom I saw you interviewed
Did he do surgery on you?

I think mine is pushed from
Tarlov cyst

Meds and pt are useful but just not enough

What treatments have worked for you

I really appreciate your help

[Violet M]

Sorry you are in a huge flare. Maybe you can ask for some extra pain meds to get you through it. I used a lot of ice after my nerve blocks when I had a flare but pretty much anything often just takes the edge off the pain.

No, I didn't go to Dr. Elkwood. My surgery was before he came onto the PN scene. I had surgery from Dr. Bautrant in France. I don't know if surgery would be right for you.
Dr. Feigenbaum is one of the experts on Tarlov cysts. https://www.frankfeigenbaum.com/ You can do a search on his name and see what other patients said about him on this forum.

Violet