New Person with Pudendal Nerve Disorder

[konedog4]

I wrote Dr. Ken Renney a letter telling him about my situation and asking advice (he had the trans-glute surgery in France with Dr. Roberts). He did not write back, but sent me back my letter and scribbled two sentences on it. He said the surgical results in Houston were 100% unreliable. These are his words, not mine. He said 1 in 3 get no better, and 2 of 3 have improvement. He did not define improvement. I asked his where he would advise me to go if I was considering surgery, and he said Houston or Roberts in France.

Frankly, I expected more of an explanation from him and am disappointed he chose not to take the time to write more. I know how busy people are, but his extremely brief answers left me still in the dark regarding surgery.

Jim

[MNMom]

Jim/Rita,
I have learned stretching is so counterproductive for this issue over the last year. It feels so good while you're stretching, but then you pay for it severely. I wish there were some exercises I could still do but everything is pretty much impossible for me at this point. I can't even walk or stand very long!

Jim, I'm not surprised you did not get more feedback from Dr Renney, but I guess the Houston team does have a tele-meeting option if you want to set up an appt without flying out there? I did try last month and they did not contact me back but I will try again.

I wonder how Dr Renney feels about Dr Hibner? I have read all about his modified TG approach and I really like it but that is my very uneducated opinion.

MNMom

[ritak]

Hey MN MOM and Jim, Now that I have been seeing Beth and 2 other PTs I am hesitant to think that my issues are PNE.None of the 3 PTs I am seeing think that I have PNE either. My structural/muscular issues of the waist down are so imbalanced. This in turn most likely has produced an inflamation on the nerves surrounding the area. I am learning lots about the imbalances and doing specific exercises to correct what is not right. My hopes are that I can continue on the right path. Finally I feel I have connected with people that have recognized the issues I have had all along. My goal is to alternate between the 3 PTs seeing two of them a week and then winding down as I continue to see progress. Knowing my body I feel I will need to see someone to keep me in check monthly. My nerve pain is greatly reduced and mostly in the evening when I do have it. I still have a fair amount of muscle pain. So happy with myself that I chose not to go through with painful injections and even more expense only to probably find out that I would have had to go through this PT in the end to correct the problems.
Lots of expense and time but its all worth the goal in mind.
Peace,
Rita

[MNMom]

Rita,
So glad to hear that! So you think it is some type of neuralgia and not entrapment? I always think - how can anyone ever know if they are entrapped or not until they actually undergo surgery and someone cuts them open to see?
I do think PT is soooo important. You should definitely try that route before thinking of anything else. I should tell you that I do not find them very painful, though. The pain of the injections was nothing compared to the pain of PNE (or just PN - or whatever!).
I hope PT continues to work for you. I have not seen results yet but I am not losing hope (on my 11th PT now!). I also have muscle imbalances, but the PN has so far prevented me from making progress. I think PN itself - the muscle tightness and trigger points - can cause the imbalance as well as being an effect.

MNMom

[ritak]

Hey MN MOM,
The diagnosis of three PTs for me was all the same. Structural/muscular issues and not PN or PNE. Totally unaware that my right leg is rotated outward from my hip, rotated pelvis and several major muscle groups not firing while others doing a job they are not meant to due placing nerves on edge. So I guess the last straw was for a sort of neuropathy to occur. Looking back in the scope of it all I guess it all makes sense to me now. I have been crooked for a lot of years, sort of working on this till the pain could not get any worse. My body said HELLO...fix me please! Yes I have felt pain while going through treatment but my days that I am better are getting more frequent than before and my body is learning to correct what is not right.In my mind with PNE there has to be a reason why the nerve became enflamed or pinched off in th efirst place. I just am doing the least invasive treatment to my body. I dont feel I am a candidate for surgery. For me surgery is a last resort after all other methods of treatment have failed. I have had surgeries in the past and the body has to make compensations for them most of the time.Does surgery completley fix the problem ? I have not read too many successstories on that either. So I guess I am going to keep plugging away on doing what I am doing. I am giving this 6-7 weeks and doing my own re-evaluating. It just seems like a good time frame. I hope that you too find some health resources to push you towards some relief. Keep a good positive attitude....that does help!!!!
Peace,
Rita

[MNMom]

Jim/Rita,
Hope you are doing well, well enough to enjoy the week of 70 degree weather we have coming up. Ice out in March, unheard of in this state!!
I thought I would check in with how things are going for you. I had my third injection last week. It did calm things down a bit. My sessions w/Beth have gone well but I haven't seen any marked improvement yet. I am also prone to overextending myself anytime I start to feel a little better. My kids never slow down and I am always tempted to keep up.
I am pretty sure I will be trying the Shockwave Therapy next month. I had a conversation w/Dr Andrew and he said his success rate is 95% and those 95% feel 95% better after two or three sessions. Sounds too good to be true! It's a good chunk of change, but now that I have an opportunity I feel I must seize it. I have spent far too many months wasting away in this bedroom with no options while my life was passing me by. Now given an option I have to give it a shot.
Talk to you soon!

[konedog4]

Hi MN Mom,

Thanks for checking in. I am about the same. I had one session with Beth, more of an introduction than actual therapy. I will give this form of therapy a go to see what results can be obtained. I am playing around with the dosage of my one medication, Clonazepam, to see if it has any direct effect on sitting pain. So far, no real results. I am swimming, walking and doing some limited jogging for personal physical therapy. I am doing a lot of praying too!

I am very excited about you going for Shockwave Therapy. PLEASE document every step of the way for us who may try that form of therapy in the future. I am considering it myself.

Thanks for sharing your experience!

Jim (kone)

[konedog4]

I had an entire day with no significant pudendal symptoms. No perineum tightness or pain, no rectal tightness, and no urinary symptoms. I can actually sit on a bed with no perineum pain. It was wonderful. I praise the Lord for this. It gives me great hope.

kone

[MNMom]

Jim,
Wow, what great news! Any idea what brought it on? Did things progress to this throughout the week?
I think my third injection is starting to help me now. I also think it helps me tolerate and benefit from the PT.
I hope things continue to improve for you!
MNMom

[konedog4]

I wish I could definitively tell you. I have been doing self-physical therapy by massaging trigger points in the perineum and peri-anal area; been swimming a lot, been walking a lot, and have been praying and prayed for a lot.

I give glory to God.

I know my improvement was not the steroid shots - they hardly helped me at all (alcock's injection helped a bit).

kone