New with Questions

[April]

Hi Steve,

My impressions are the same as Violet's. A pn doctor did once tell me about a pn patient of his who got relief from steroid injections and came back to his office every 6 months for a new injection, but that is the only case I can think of. My sense is that the injections are normally used for pn patients as a diagnostic tool. And the approach described on the website that you posted (i.e., multiple injections are needed to reset the length tension curve of the muscle and retrain it to remain in the lengthened state) does not sound like an approach that would work for pn. I didn't read all of the earlier posts. Is this a doctor who has training and experience with pn?

April

[strongsteve]

Yes.. this doctor is a physiatrist working at a pelvic rehab center. She is one of the few doctors listed on this site for Dallas, TX. I just dont know what to do. I really enjoy the valium compound suppositories that she gives me but I am concerned these injections will just keep making it worse. She wants to do the left side also but I have no pain on the left side. I dont know what to do.

[Violet M]

Hi Steve,

I can't see why you would need to do the left side if you don't have pain there. It seems like you could be risking getting pain on that side also. Did they give you any rationale for why you need to do both sides? You could refer her to Prof. Robert's article about the risk of doing more than 3 steroid nerve blocks and question her about what the risks are from their treatments.

I was trying to figure out which doctor you are referring to. Is this the website? https://www.pelvicrehabilitation.com/se ... rve-block/
I see that they use hydrodissection but I can't see where it says they use a steroid and lidocaine weekly. Maybe I'm on the wrong website. I also read the FAQ section you referenced but I didn't see where it says they use a steroid and lidocaine weekly. Maybe I am just missing it though. Did they tell you verbally that they use those medications in the nerve blocks?

I have been told by an orthopedic surgeon that there is some risk with nerve blocks so maybe you want to get a second opinion. You could call around to some of the PT's in the area who treat PN and find out if they know another PN doctor in the Dallas area. Or you might consider traveling to Houston or Austin for a second opinion.

Violet

[strongsteve]

Here is what they say

https://www.pelvicrehabilitation.com/se ... reatments/

She says that doing the left side will keep it from compensating for the right side.. ? I know.. not sure.
The injections contain lidocaine and a steroid.

[Violet M]

The website says they use an anti-inflammatory instead of using the word "steroid", so I wasn't sure if you saw the word "steroid" on the website or they just told you that. I wonder if they have published any peer reviewed literature on this protocol.

There are people who have had PNE surgery just on one side because they had pain on only one side, but later they developed pain on the other side so they went back for a second surgery. I guess it's possible the same thing could happen with a nerve block but I haven't heard of it.

I don't know, Steve. It sounds tempting when you read their website. It's a really tough decision for you and I don't have a good answer for you, other than recommend that you ask them lots of questions, especially about what can go wrong and whether anyone ever gets worse from their protocol.

Violet

[April]

Hi Steve,

I agree with Violet. I would ask them lots of questions, and I would also get a second opinion, if possible. Their approach doesn't make sense to me. The pain doctor should be able to prescribe suppositories, so I don't think you need this doctor for that prescription. If pain doctor can't prescribe those, I think you should be able to continue to get them from this doctor without getting this doctor's injections.

April

[strongsteve]

I just had my third set of injections. The one that worked the best was one that was done directly to the perineal branch right where it breaks off at alcocks canal. The one actually made me feel really good for about 24 hours. All the others just made me numb and then flaired to extra painful. I am so glad that I have the oxy, but that doctor is threatening to cut me off. When my testicles flair up, it is hard to breathe and hard to function. I become very nauseous. The only thing that helps is the oxy. I am on so many meds that I feel like a zombie all day.

[Violet M]

Is the doctor giving you satisfactory answers to your questions? It would not be fair for the doctor to cut you off if they aren't answering your concerns satisfactorily. They should be able to give you some statistics on how successful their protocol is for patients with your symptoms who have had a successful perineal branch nerve block. Are they primarily counting on the anti-inflammatory medication to reduce the inflammation and release the nerve, or are they counting on hydrodissection to eventually release the nerve? It's a little confusing when you read this page because it mentions both. https://www.pelvicrehabilitation.com/se ... reatments/
It doesn't say what fluid is used for the hydrodissection. They owe it to you to explain it thoroughly, including risks and the mechanism for how it works.

The perineal branch was the nerve branch that was most affected for me, according to my surgeon, Dr. Bautrant. I have had excellent results from my treatment so I just want to give you some hope that with the right treatments, there is a good chance for you to get better and hopefully the drugs are a temporary thing. Oxy is what got me through the worst of it. You could also consider buprenorphine which is a narcotic but not as likely to cause you to develop a tolerance to it.

Violet

[strongsteve]

Violet,

Thank you for your response. Apparently, their goal is to treat with these injections that contain lidocaine and a steroid anti-inflammatory along with physical therapy and the medication suppositories. I do not think there is really an end game to any of this. The shots are extremely temporary and almost always cause a flare. The PT really doesn't help in and discernable way and sometimes makes it feel worse. It just seems like I live for any relief the medication can give.

[Violet M]

It can be pretty discouraging when you don't see any progress, especially when there isn't an easy, quick fix. You still have a lot of options though, so stay strong, like your name, Strongsteve, and keep exploring your options because you still have other options that you can try.

Violet