Has anyone been cured and if so HOW?

[Mystoryhurts]

I second Lernicas thoughts. My wife is currently going through treatment with Dr Andrew and her nerve pain is disappearing also. Her pain was 8-10 each day and spent 20+ hours a day in bed. Her activity level continues to increase although she has many limiting muscle(hip flexor, IT band, obturator, etc.) issues being addressed also. My wife is scheduled for TG surgery which will be postponed and likely cancelled in the not to distant future. The area of her nerve pain has reduced by 75% and intensity has reduced a lot also. Good luck.

Just wanted to add that it is a very painful treatment and my wifes pain levels were very high coming in to the treatment. It was heartbreaking to see her go thru this but she saw signs of improvement rather quickly after. Unfortunately, you need to experience very high pain levels to see progress.

[kathyd]

Hi Lernica,
I don't post often but had to check in and say,
Ths for posting about thistreatment..So happy for you ..it sounds wonderful! Gives us all hope.. I will go to the your story area and read it..
I am in a similar condition as the wife of "mystoryhurts"..(Thx to you sir, for posting also, as I spend much of my time like your wife did...So good to hear she is doing better..
I have IC and PN issues,but the "no sitting" has been the one that has impacted life the most.. For me, I believe that too many invasive procedures were done and have left me in this painful disabled state. (I did NOT have the PNE surgery though)
Now I am in anal pain as well ....long story...We are still working on finding a pain med program that my bladder/pelvic floor tolerates so that
I can participate in activity w/out the pain backlash.
Cornwall is about 6 and half hrs from my home...so a car ride would be do -able.. scared to get my hopes up, as I fear that so many docs offer a "carrot" to those of who are desperate, and have had many disappointments..
but at the same time "hope" is what keeps me going... I was impressed by the lovely story someone wrote (on another thread about the seeing her Pud hope friend with the "Hope" sign at the train station in Ontario...
Thx for posting... any more encouraging stories I would love to hear.
Prayers and good wished for all
Kathy

[Jax87]

Can this type of therapy help someone who has pudendal neuralgia but is not entrapped? I have vulvar itching and burning that is constant but increase with sitting. I am doing a lot of conservative treatments now which I hope will improve things, but I am curious about this treatment. I have had the Potter MRI at the HSS in NYC which was completely clear except for a slightly deviated coccyx. My PT also does not think I am entrapped. Could this therapy help me with the neuropathy symptoms? Thanks

[Violet M]

Hi Jax, I don't know your history or how your PNE started but I think it's important to know that the Potter MRI's have not been shown to conclusively rule out all entrapments. It depends on your definition of entrapment but some people feel there can be musculskeletal misalignments that might not show up on an MRI.

I don't know the answer to your question about ESWT but hopefully some of our other members can answer this. You could also e-mail Dr. Andrew and see what he thinks. His contact info is at this link: http://pudendalhope.org/node/90

Violet

[Lernica]

Could this therapy help me with the neuropathy symptoms? Thanks

Yes. You can read Dr. Andrew's protocol here: http://sites.google.com/site/drkirkandr ... s-protocol

[oldcarguy]

Hi all,

I'm struggling with the decision of whether to get the first nerve block done in Houston when I go down there for my first visit. From the directions I was sent it sounds like the first trip consists of consultation, PNMLT, visit to their PT, and the first PN injection. The injection has me spooked from reading the stories about people getting worse from them. So I'm really interested in the ESWT info since it sounds like others have been helped by it. The trip to Ontario doesn't sound too appealing but if it really works, it would be worth it. So now I'm standing here confused as whether to go straight to Houston, wait and try to get a Potter MRI, or maybe go straight to Canada for the ESWT treatments. The pain involved with the shockwave therapy doesn't sound too appealing either but if the results are all coming out good, maybe it's worth it.

What would you all recommend since I really haven't had any tests yet clearly showing where possible entrapment is? All I know is what I've diagnosed myself and assumptions I've made from my symptoms which are pain with sitting, pain from bending over or squatting, etc. My pain is primarily in the peri-anal plus minor pain occasionally with urination. I'm on neurontin and Elavil at night plus baclofen. Thinking about discontinuing the baclofen because it didn't seem to help anything and I'm starting to get some constipation. I mainly am concerned with doing something that would make things worse but yet I have no quality of life right now with all the limitations so I'm willing to try anything that works. My pain wasn't constant originally but now it is (it's been going on for about 8 months now) plus I'm 50 years old now. So I probably wouldn't recover as quick as younger people like Surfsup but I'd sure like to try.

[Violet M]

Carguy, it's a very tough decision, really.

I can't say what to do but keep in mind that the majority of people who have nerve blocks do not get worse and what you read on this forum is by no means statistically accurate.

Secondly, there are no studies on ESWT and it's effectiveness at treating PNE (hopefully there will be soon!) although it certainly does sound promising. I only know of one person worse from it so far and he did not have it through Dr. Andrew.

I am not trying to sway you in any direction. Just giving you more info to consider as you make your decision. Having gone through a successful surgery myself I have to say it was not an easy road and I personally would lean toward starting with conservative therapies before moving to invasive therapies but the only thing we can say for sure about treatments for PNE is there are no guarantees, unfortunately.

Wishing you the best and saying a few prayers for wisdom in your decision,

Violet M

[Lernica]

OCG,

If it would help you make a decision, you could contact other members who've had ESWT by sending them a PM. Other than me, there is MyStoryHurts, MNMom, Surfsup (he may not be checking messages anymore but I have his email address), and PelvisStressly (who did not benefit from the treatment). Dr.A has treated well over 30 PN patients now but only a few are on this board. Given his experience with PN, he is pretty good at figuring out the cause of pelvic pain/neuropathy and in directing his patients to other care providers if necessary. So just from a diagnostic perspective it might be helpful to see him. Plus, he has virtually no waiting list since he schedules his out-of-town patients in the evening so as not to interfere with his local practice.

You should also know that he screens his patients by asking them to complete certain questionnaires before agreeing to see them. If he doesn't think you'll benefit from his treatment, he'll let you know and will also advise you where he thinks you could obtain better care. Sometimes he asks patients to obtain a Potter MRI before he will treat them.

Good luck in deciding what to do, and please do not hesitate to contact any of us if you have any more questions.

[oldcarguy]

I've had a regular MRI here and was wondering if Dr. Potter would read an MRI from another doctor. I thought I'd read somewhere she might be reading regular MRI's sometimes. I'd like to have a Potter MRI but obviously that would take time and not sure insurance would cover it since I've already had one. So many decisions to make.

[helenlegs 11]

I believe the answer to that one is NO, unfortunately OCG. She did at one time, but I doubt she can keep up with the amount of her own work in front of her now.
Someone else who has had Potter experience will maybe be able to tell you better. Hope so
Take care,
Helen