My experience and update with Dr. Marvel

[Allan T]

Hi Hope,

I'm just curious - do you think the piriformis muscle being pierced is the cause of your issues? I have very similar symptoms as you with PGAD that is on and off with various urinary and sexual dysfunction. I've also had strange buttock pain on the right side that used to come and go, but that has gone away. I still get a weird little pinching feeling in my right buttock sometimes. I haven't gotten a 3T MRI yet, but I am starting to think this may be my issue too. Have you considered surgery on the piriformis muscle to release the nerve?

[Hopeitworks]

Hi Hope,

I'm just curious - do you think the piriformis muscle being pierced is the cause of your issues? I have very similar symptoms as you with PGAD that is on and off with various urinary and sexual dysfunction. I've also had strange buttock pain on the right side that used to come and go, but that has gone away. I still get a weird little pinching feeling in my right buttock sometimes. I haven't gotten a 3T MRI yet, but I am starting to think this may be my issue too. Have you considered surgery on the piriformis muscle to release the nerve?

Allan T,
Yes, I am pondering the idea of getting the nerve released from the piriformis muscle, as a last resort. There are three reasons why I am reluctant to jump right in and have surgery. Both MRI's show two different findings. If I had to pick which MRI is most accurate, I would have to pick HHS Dr. Potter's MRI. Which states a small portion of the sciatic nerves pierces the piriformis muscles bilaterally. The second reason is I have heard this type of surgery can cause more harm. But, I feel I need to do more research to make a better decision. If you come across anything please share it with me. The third reason is I don't think it will make my PGAD symptoms better. It may take away the burning in my thighs.

I want to explore blocking the root of the clitoral corpus on each side by injecting 5mls of 0.5% bupivacaine about 2cm lateral and 1cm anterior. I have to mention this to my Interventional Radiologist. I do not think I am going to get anymore pudendal nerve blocks. If I can't get the clitoral block I am going to research DRG modulator or other neuromodulators.

Happy Holidays,
Hope

[Violet M]

Thanks, Hope. You know how we are always looking for more info around here, especially when it comes to new providers and new treatments.

Violet

[BrianG]

Hope, I have a neuromodulator to help with my PN pain. I can tell you about my perceived pros and cons. I, also, like you, went to see Dr. Marvel as one of his male patients. Cant remember...but have you tried Lyrica and/or Cymbalta ? My wife is an OB/GYN incidentally....BG

[Hopeitworks]

Hi Brian,
I sent you a PM.

[Hopeitworks]

January 2, 2018
I met Dr. Shiller and she is not an expert on PGAD, she knows a little about Pudendal Neuralgia. She admitted that I know more than her. She told me I can lead and she will follow. This can be an advantage in the sense that she will do whatever I ask, but the con is she lacks the knowledge and guidance. I am no expert and need suggestions from a doctor that can present treatment options to manage my symptoms.

I do have an appointment scheduled with Dr. Conway this month, but I may have to reschedule it due to the weather.
I am researching other treatments and will share if I find anything.

[Hopeitworks]

Here is an update:
Due to personal reasons, I felt it was time to reach out to other doctors for help. Therefore, Dr. Marvel is no longer treating me for PN/PGAD.

I found a new doctor named Dr. David Gordon. I have my first appointment with him in February and will post my experience for everyone.

I am also keeping Dr. Shiller (gyn) because she gives me the freedom to run my case. I asked her via email for a Lumbar and she just faxed it over to Johns Hopkins, with no questions asked. She didn't ask me to scheduled an appointment with her, she just said okay the order has been faxed.

Hope

[Violet M]

Hi Hope,

I haven't heard of Dr. Gordon. I would be interested to hear what his specialty and what his expertise is in treating PN. Hope your appointment goes well and that he is able to help you.

Violet

[Hopeitworks]

Here is a link to Dr. Gordon.


http://mipns.org/services/

[Violet M]

I wish you all the best seeing Dr. Gordon. He certainly looks well qualified and hopefully will have some answers for you.

Violet