Can anyone give me medical proof of negative side effects?

[Karyn]

Hi Velma,
Do you happen to know if you've got PNE vs. PN?
My concern is: you've previously stated that you've had multiple pelvic surgeries. I understand that you've been participating in PT treatments for almost a year. Have you noticed any improvements from these treatments? Personally, I agree with your concerns about adding prolotherapy to the mix.
I may have missed it, but I don't recall you mentioning that you've consulted with one of the PN Specialists. Is that correct? Who diagnosed you with the PN? The PT?
I'm not trying to diminish the significance of pelvic misalignment, but in your case ... IF you have an entrapment, it's possible PT may not be your best treatment option at this time.
I'm looking forward to your response. Hopefully, we'll be able to collectively figure this out, or at least point you in the right direction. I hate to see you continuing with treatments, if you're not benefitting from them.
Kind regards,
Karyn

[HerMajesty]

Karyn has a point. The pelvic surgeries put you at high risk for scarring within the pelvis, and if you have scar tissue entrapment or any other kind of non-biomechanical pathology, that might need to be addressed by an MD not a PT.
As far as what to address 1st: I would always address SIJD before seeking any kind of invasive medical care, because SIJD correction is a more conservative form of care: Conservative first is safer. (No SI fusion though, that is NOT conservative!). I don't believe SIJD can be treated effectively with internal PT. But the external PT is only any good if it is working. If the SIJD is not improving under the care of either PT, then there is no point in seeing either of them...unless the PT is helping to reduce your pain levels or function better in some way.

[velmartd]

I have Stephanie work on me from approximately 9 months, and another pelvic PT for the SIJD. I have had the MRI that stated:

Focal Abnormality in caliber and image intensity affecting the Pudendal Nerve and its proximal branches just at and just distal to the level of the ishcial spine on the left greater than the right side. These findings are consistent with the presence of a pelvic irritative Entrapment Syndrome at the level of the left ischial spine. Hyperintensity change noted in the are of the Impar gangion anterior to the firs coccygeal Segment.

I read this as an Entrapment.. what do you think ? This was by Dr. Aaron Filler, I guess I should have the PNMLT in Sacramento, California ?

I have had a PN Injection, S1 Nerve Root, injection helped somewhat, but still have lots of pain, but I can sit at least.

Thanks Velma

[velmartd]

SORRY MRN, not MRI - Also I've only been working with SIJD PT, for 1 month. I really don't what to do next ?
The report did state no Tarlov Cysts, or piriformis muscle. Thanks Velma

[Karyn]

Velma,
If it were me, I'd be consulting one of the PN specialists. Is there anywhere in your MRN that notes abnormalities with your SIJ?

Best,
Karyn

[velmartd]

Hi Karyn,

My MRI stated I have sacroliitis, and when I go to the PT she puts it back in place, and feel wonderful.

I guess next step, would be the PN Test, that probably would confirm that I actually have entrapment.

Thanks Velma

[Karyn]

Hi Velma,
I'm glad you're benefitting from the SIJ work. Are you able to hold the adjustments? The gold standard for diagnosing SIJD is an injection. Have you had this done?
There really are no diagnostic tests (i.e. PNMLT, EMG) that will clearly indicate an entrapment. Those tests will detect abnormal signals of the PN.
I'm not trying to discourage you from having one performed, but I do want you to understand that abnormal readings are not indicative of nerve entrapment. They are indicative of nerve dysfunction. Diagnostic criteria for PN(E) is symptoms, medical history, physical exam by a PN Specialist, positive nerve blocks, and yes ... usually a PNMLT/EMG.
So, you've got the blocks. You've been going to PF/PT for almost a year. You certainly have symptoms and a medical history. Dr. Filler's MRN is somewhat helpful.
Do you know which PN Surgeon you'll be consulting with?
Best,
Karyn

[velmartd]

Hi Karyn,

There only 2 that PT suggests, Dr. HIbner and Dr. Conway, do you know anything regarding these two doctors, and results for PN Surgery ?

So hard to take the next step, but read a lot of PN sufferers, have that Potter Imaging done ? Not sure, what to do so frustrating to not be
able to got directly to an MD, who knows about this PN issue. I live in Silicon Valley, I have been to Standford, and they nothing about the
PN, unbelievable when people fly all over the world to come to Standford. So I decided to start Pelvic PT, but the PN Nerve is not releasing
it did somewhat, and does somewhat when I have PT for SIJD, so strange but I do not stay in that position, for very long ?

What do you suggest, I don't know what to do ? I have told stay off the internet because very negative input, and will never resolve your PN
that way. But when you don't get answers or direction for the medical community, all you have is to get on the internet, and locate PN Sufferers
to see if there is anyway to relieve this symptoms, truly they are the only ones who know what you are going throught.

Thanks Velma for your response....

[Karyn]

Hi Velma,
My heart goes out to you. I understand your confusion and frustration with not being able to get appropriate diagnosis/treatment locally.

I have told stay off the internet because very negative input, and will never resolve your PN
that way.

Really?!? How's your PN resolution coming along so far?
I've heard this many, many times - from many different people. But I have to agree with you. If it weren't for the internet and places like this; I'd still be spinning my wheels on a road to no where, seeing specialist after specialist and participating in treatments that were inappropriate and/or ineffective. Really ... we're all we've got for valid resources.
In my opinion, both Dr. Hibner and Dr. Conway are compassionate, talented surgeons. Honestly, surgical results vary depending on your individual pathology, how you heal and how much nerve damage you have. There are no guarantees with these nerve surgeries. It should be viewed as a CHANCE.
I had bilateral TG surgery with Dr. Conway in March 2011 and am very pleased with the results. Unfortunately, I also have Tarlov Cyst Disease. So, while I no longer have pudendal nerve entrapment, I still have pudendal neuralgia; along with lots of other nerve dysfunction.
Choosing a surgeon is a very individual choice. As I previously stated; I have very high regards for both. However, their protocols are different. To the best of my knowledge, they are as follows:

Dr. Conway
Provides free telephone consultations to patients. You would have to call his office to set this up and you can expect to hear back from him within 4 - 6 weeks.
After the phone consultation, he will determine if it's worth it for you to travel to see him. Being cognizant of our travel difficulties, he offers "one stop shopping", where you would only have to make one trip. On day one - you would have EMG testing, a physical exam and discussion. If he deems you to be a surgical candidate, you would have the option of having surgery the following day, or you could schedule it for another time. Speaking from experience, Dr. Conway is highly responsive (maybe not always in a timely manner), but once you become a patient of his, you remain a patient. If you call him for ANYTHING, he WILL call you back. His office staff is outstanding.

Dr. Hibner
Usually requires multiple trips for evaluation and treatments. You must schedule an appointment with his PT (Loretta), who he heavily relies on for input. After meeting with Loretta, you would then see either Dr. Hibner or one of his fellows. I don't believe Dr. Hibner performs EMG testing. You may be required to have imaging done by his radiologist. Then ... well, it depends on how your eval goes and if he wants you to try more treatments (nerve blocks, botox, etc ...) before offering you surgery. I'm not aware of anyone who has gone for a consult and had surgery within the same week.
I'm not aware of Dr. Hibner speaking to patients over the phone. Of the surgical patients of his that I am aware of, I've not heard glowing reviews regarding his office staff.
I understand this may seem a bit overwhelming but I hope the info is helpful to you. Depending on your situation, you could separately consult with both of them, if you choose.
I wish you the very best with your decision. It truly is agonizing!!! Please let me know if there's anything further I can do to help.
Hugs,
Karyn

[HerMajesty]

I got interstitial cystitis in the '80's before the internet and it was living hell, being at the mercy of doctor's ignorance and lies. The internet is the best thing that ever happened to people with rare disorders. Use it wisely, but never stop using it.