Health Organization for Pudendal Education

FYI, Dr. Conway is sending some patients to the 3T MRI at Mass General in Boston, where they conduct Dr. Potter's protocol.

This is good news, Dave.

Hello

Just wondering where you heard this. I work at MGH and am desperately trying to get a 3t MRI done. My PCP won't do it unless i see dr. conway and get written consent!!! i can't get in to see dr. conway until february.

Does that make any sense to anyone? Wouldn't it make sense to do the MRI NOW, so when i do see him, he at least has the results. Rather than see him, 2 months from now, then get the MRI that takes more time, and then wait another month or so for the followup?

I am so baffled at how doctors treat this, i am truly amazed.

DO you know of any doctors at MGH that treat this?

Thanks so much

This might be an insurance issue. I know my insurance wouldn't pay when my PCP ordered specialized MRI but they paid once Dr. Hibner ordered it. This might be part of what they are thinking about. Just guessing here.

That does sound crazy, Joe. I wonder if your GP could contact Dr. Conway to somehow get the MRI ordered in advance. Or perhaps Dr. Conway knows a specialist in Boston who you could see who would order it. People have told me Dr. Conway's office staff are very nice so they might help you with this.

I have heard in the past that Dr. Conway doesn't put a lot of stock in the 3T MRI -- although I don't think he discounts it completely. Also, my understanding is that not everything shows up on the 3T MRI -- such as some musculoskeletal anomalies/misalignments, etc. So while it may provide some valuable info, don't be too disheartened if it doesn't show anything.

Violet

Hi Joe,
Just adding my two cents here...
I'm a patient of Dr. Conway. I understand you're logic with wanting the MRI prior to seeing him and am sorry your PCP is being so uncooperative. I could be wrong, but I'm pretty sure he can't legally write you a script for an MRI without ever having met you. Are you involved with a physiatrist or pain management specialist at this time? Perhaps one of them could order the MRI?

joeparz wrote: I work at MGH and am desperately trying to get a 3t MRI done.

joeparz wrote: DO you know of any doctors at MGH that treat this?

Well, that would be a question I would ask YOU. My experience with the Boston hospitals has been very poor. Especially MGH. I've even attended their "Pelvic Floor Disorder Service", where I was diagnosed with myofascial pelvic pain. I've also been to their Pain Center. They simply do NOT acknowledge pelvic neuropathies. To the best of my knowledge, there's NO ONE with expertise in this area. I've also been to B & W's, as well as Spaulding. Same deal.
I do hope you're able to get the 3-T at MGH and come back to let us know of the results. Just a word of warning ... I've had a 3-T elsewhere, supposedly using Dr. Potter's protocol,
and the results were drastically disappointing.
Please let me know if there are any questions I can answer for you, or if there's anything I can do to help.
Kind regards,
Karyn

Fyi, Miriam Bredella is a radiologist at MGH involved in the Potter MRIs

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

Thanks everyone for the replies

Well after doing tons of research and a hundred phone calls, i have dr.oaklander who is a pain specialist calling me back from MGH(friend of my mothers), and she made a call to radiology to call me and set something up for me. This was all relayed via a message so i am not even sure what they are setting up, but i am hoping it's the 3t scan or even better an MRN which i don't know if they even do here.

i have been researching the MRN which they do here in boston, that they promise shows detailed images of every nerve in the pelvis.

http://www.neurography.com/nerve-a-spin ... -neuralgia

I am hoping A) it works as good as they make it sound and B) My PCP will order it for me. She seems hesitant to pretty much do anything at this point besides write me scripts.


It seems the MRN has come a long way, especially in helping to diagnose this condition, so i am hoping this will help with the bigger picture.

I have been getting a lot of Cold/burning numbness in the back of my thighs, butt cheeks, and lower back. So i am wondering if i now have sciatica as well as the PNE. Or if Sciatica could cause some of my symptoms........

Hi Joe,
It sounds like you're getting somewhere, even if it's with baby steps. Very nice of Dr. Oaklander to contact MGH radiology on your behalf. I'm familiar with her and she seems to be a very caring person. Please correct me if I'm wrong, but I was under the impression Dr. Oaklander only does research now and is no longer a clinician.
There is a Filler MRN facility in Boston, but not at MGH. And just so you're aware - insurance doesn't cover the MRN.
I wish you the best with getting the imaging! Please let us know how you make out.

Kind regards,
Karyn