Health Organization for Pudendal Education

Karyn wrote:

Mod 6 wrote:Fyi, Miriam Bredella is a radiologist at MGH involved in the Potter MRIs

Thanks, Mod 6!
What is her affiliation and experience with Dr. Potters MRI's?

Kind regards,
Karyn

I believe they are friends from med school or college. Dr. Potter knows her & works w/ her.

Well i finally got a call back from the radiologist who said, he is going to get the 3T protocol early next week. I am assuming this means i am in fact going to be getting it, as why would they get the protocol only to not test me.

Also got a call from Neuro who said she is familiar with the condition and is going to do everything she can to get me some relief or at least a partial diagnosis.

And i see Infectious disease next week as well, who will hopefully test me for every bacteria in existence, and hopefully settle this positive lyme test once and for all.

These days i seem to be suffering with way more back pain than anything at this point. Because i am standing all day.

The burning and numbness has severely lessened, but now i feel like i can barely hold myself up because my lower back feels so stiff and achy.

Still have the golfball in rectum feeling( But i read this could be a trigger point, not just PNE, and i most certainly have trigger points as when my PT presses on them the pain is a 10)

Still notice the sitting pain, but it;s only when i lean back on my coccyx, i never had terrible perineum pain. It's a strange pain as well, feels more like a weak muscle, or something.

Still have PGAD although its been coming and going, no pun intended.

Urination doesn't burn anymore, but my stream is definitely hindered a bit, and i don't feel like i am emptying completely. Drinking 8-10 glasses a day and feel like i am peeing maybe 1-2 glasses at most.

Still have sexual dysfunction, not sure if this is mental at this point or physical.

Also another weird symptom i always forget to mention, when i have a BM, i pee like 10 times while i am on the toilet. When i first go. ANd then as i am waiting, every minute or so, a few squirts of urine.


I don't seem to have the classic PNE symptoms or at least maybe i have a milder version, i have been reading this forum everyday, page after page. And i feel so terrible how much pain some of you are in. I am not religious myself but i think about you guys on a daily basis. I hope my thoughts bring some good karma your way.

Starting to wonder since i don't excruciating pain, but more annoying symptoms, maybe mine really are related to Pelvic floor problems. But who knows. Guarding and anxiety have also become my worst enemy. Due to my chronic and debilitating anxiety, i developed a habit of guarding, which is when you squeeze your PC muscles involuntarily.

MRI on 12/17, they were working on getting the protocol, but i finally got a call today and they set it up. Didn't get to ask about the 3T, but i am assuming since i was hounding and harassing, and they had to get the protocol, it is in fact the 3T.

Hopefully it shows something.......anything........

Infectious disease appointment tomorrow, where they will finally be able to check off Lyme once and for all hopefully. As well as anything else that could be causing me all this grief.

Thanks everyone for the support.

Best wishes, Joe!

Kind regards,
Karyn

Had my scan today, was 50 minutes long in the 3T. Had no contrast which i thought was weird.

The radiologist took weeks researching the protocol, and is sending the results to a few different specialists, so hopefully something good comes out of this.

Due to the high resolution of the 3T's, contrast usually isn't required.

joeparz wrote:The radiologist took weeks researching the protocol, and is sending the results to a few different specialists, so hopefully something good comes out of this.

Is this the same radiologist Dave was referring to?
Best wishes, Joe! I hope you get your results, soon!
Kind regards,
Karyn

Thanks Karyn

Should be getting the report tomorrow he said. I don't know their names, he is a radiologist. Dr. Mykol Larvie, working with Dr. Oaklander, and a few others he didn't name. I am assuming Myriam Bredella will be involved.

I will say laying in the MRI for 50 minutes sucked! When i lay down on my back i get really bad pain in my tailbone from the pressure. Almost feels like i fell on it.

Hi Joe,
I agree with you about lying flat for all that time in the MRI. I would much rather have another EMG than suffer the pain and long term consequences of lying on my sacrum in an MRI.
Hope you get your results soon! You had previously mentioned that your PCP wasn't very supportive. Do you know who will be going over your images with you?
Best,
Karyn

Well the MRI came back completely normal. There were no abnormalities.

I don't know whether to be happy or not at this point.

Or if i should go for the costly MRN as well?

I am running out of ideas. I am desperately trying to hold on until i can see Dr. conway in february, but i am skeptical that he can even help me.

The only diagnostics i have left are injections and an EMG, but i definitely do not want injections, especially with all tests showing my pudendal nerve being fine.

WHat does the EMG entail? I know they put a finger in your rectum, but where is the needle placed?

I start PT again with someone new in a week, so i am hoping she can help me out.

I definitely have pelvic floor dysfunction, and i can feel the trigger points, so maybe this will help.

I know anxiety being the cause is a touchy subject on here, but i honestly think this is what is causing mine........

Thanks everyone

joeparz wrote:The only diagnostics i have left are injections and an EMG, but i definitely do not want injections, especially with all tests showing my pudendal nerve being fine.

What tests are you referring to, Joe? The MRI? I don't know of anyone besides Dr. Potter and Dr. Filler who are adept at identifying pelvic nerves via imaging. Even then, the imaging is NOT considered a diagnostic tool for detecting abnormalities with the PN. It's considered to be helpful, but not gold standard. Your symptoms, medical history, physical exam by a PN aware specialist, EMG and nerve blocks are the standard for determining PN/PNE.

joeparz wrote:WHat does the EMG entail? I know they put a finger in your rectum, but where is the needle placed?

The digital rectal exam is more consistent with the physical exam. It sounds like you're talking about the PNMLT, which is a bit different. Are you scheduled for the EMG with Dr. Winefield prior to meeting with Dr. Conway?

joeparz wrote: I am desperately trying to hold on until i can see Dr. conway in february, but i am skeptical that he can even help me.

Keep holding on, Joe. From what I understand, this will be your first time meeting with someone who specializes in PN. I do want to point out that you've previously mentioned LBP and lower extremity pain/weakness. That, combined with your pelvic symptoms is more consistent with some type of sacral plexus pathology.
Did your most recent MRI mention Tarlov Cysts? Either confirming their presence, or ruling them out? Do you know if Dr. Oaklander reviewed your 3T imaging or not?
Kind regards,
Karyn