Pelvic / Ortho PTs on the West Coast/WA state

List of Physiotherapists Worldwide; Techniques & Education to educate Physio's who are not PN aware, etc
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MelodyW
Posts: 18
Joined: Tue Sep 24, 2019 5:43 am

Pelvic / Ortho PTs on the West Coast/WA state

Post by MelodyW »

I've had severe pudendal neuralgia symptoms which began last October 2018. Unfortunately, my pain and symptoms have progressively worsened and I now have bilateral PN along with sciatica, SI joint displacement, possible sacral torsion, hypermobility/connective tissue problems and an anatomically short leg which all cause extreme difficulty walking. (I also have scoliosis). I'm not really able to "walk" (slowly waddle with trekking sticks) more than 10-15 feet at a time now because it feels like both SI joints and pelvic muscles are "glued" in and twisted at the wrong angle if that makes sense.

My question is: Has anyone on this forum seen Kathleen Caples at Sage PT or Holly Tanner at Flow Rehab for severe PN and if yes, how was your experience?

I'm scheduled to see Holly starting tomorrow, but I'm wondering if I should switch to Kathleen since she is one of the PTs still practicing who is listed on this site. I believe Kathe Wallace is no longer practicing / accepting new patients and many of the other Washington PTs are too far for me to realistically travel to. Also, some of the contact information for Washington is outdated and I'm not able to find updated information when I search online.

I saw Tina Allen briefly back in March but had very negative experiences there and left to see a PT at Flex PT but that didn't work out either. I want to make sure I find someone who knows enough about my issue or is willing to figure it out instead of being told "You can walk" as I try my best to limp slowly or doctors and PTs who are quick to blame my issues on a misdiagnosed "conversion disorder". :roll:

It's extremely frustrating to be dismissed and unheard by so many PTs and doctors and I just want to find a PT with a more thorough understanding of PN even if that means flying to California (thinking about Sarton PT or Pelvic Health and Rehab Center).

Anyway, my main question is: Who are the best PTs on the West Coast? / Who are the PTs who were able to problem solve and discover contributing issues? I know there are PTs listed on the site, but because I've had negative experiences even with those PTs, I thought I'd see if anyone has personal experience with a specific PT.

I've had MRIs and an MRI neurogram, but nothing is showing up on my imaging.

My one test result with some evidence was an abnormal EMG / NCS.

The interpretation of the report states: "There is evidence of modest denervation in left sciatic nerve distribution, mainly in the S1 root distribution. And a subtle abnormality in one non-sciatic muscle...The findings could reflect a modest left S1 radiculopathy or a lumbosacral plexopathy or a stretch injury to the lumbosacral plexus or an insult to the sciatic nerve."

If everything is supposedly so modest and subtle, then how is it causing so much pain and dysfunction lol?

The neurologist who read the EMG study just told me that "lumbosacral plexopathies are usually something that occurs during birth" and diagnosed a conversion disorder in her notes but never specifically communicated anything about a conversion disorder to me. Ok...well, that doesn't mean it's impossible for an adult to develop a lumbosacral plexopathy. There are always cases of exceptions to the norm.

My pain management doctor referred me to what will now be the fourth neurologist I've seen. I haven't scheduled yet because I honestly don't have much confidence in neuros anymore with this issue, at least not in my state. And I'll have to take a transport service to Seattle which, in the past, has taken so many hours to pick me up that I had to have my sister come drive my aide and I home just to get home before 9 pm from what was supposed to be a 4-5pm pickup.

I'm only 24 but this condition has drastically changed my entire life in just a few weeks and now a year and four months.
Gauxa
Posts: 2
Joined: Sun Mar 17, 2024 6:47 pm

Re: Pelvic / Ortho PTs on the West Coast/WA state

Post by Gauxa »

I want to go to physio, will help me with back pain?
onlysams
Posts: 14
Joined: Fri Aug 25, 2023 7:49 pm

Re: Pelvic / Ortho PTs on the West Coast/WA state

Post by onlysams »

I've dealt with my fair share of chronic pain and the frustration of feeling unheard by healthcare professionals. It's tough, especially when you're doing everything you can and still not finding relief. My turning point came when I decided to visit PhysioFlow that specialized in complex cases. There, I met Sean Niamh, a physiotherapist who was willing to dig deeper into my condition rather than just skimming the surface. She took the time to understand all the contributing factors to my pain, combining hands-on treatment with tailored exercises that I could manage. Her approach made a significant difference in my pain levels and overall mobility.
Last edited by onlysams on Fri Mar 22, 2024 11:50 am, edited 1 time in total.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Pelvic / Ortho PTs on the West Coast/WA state

Post by Violet M »

Gauxa wrote: Tue Mar 19, 2024 6:21 pm I want to go to physio, will help me with back pain?
It depends on what's causing the back pain. Do you have a diagnosis yet?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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