What is left to try?

[holmb]

I have observed this site for years, lacking necessary computer skills to jump in. I am directing this to the guys. I am one of you.

I had PNE operation 2007- shortly after operation I realized things didn't go right. One can't hurt that bad. All that's left to try is physical therapy and botox. My pelvic pain runs at a level 7-9 with urine in bladder( typical IC) with bending pain, sitting pain, walking pain, rectal, scrotal pain. (Typical Pudendal Nerve} My advise to anyone with thoughts of an operation is, if you experience pain levels below 6, run, don't walk, away from an operation. At least you will avoid $25,000 in bills.

I admire the fortitude of all that continue working a full time job as PNE is a very painful, unyielding condition. Unless you have it, you won't understand it. Holmb

Yes I had the nerve blocks, trial sacrial nerve stimulator, but what works for me is a bladder instillation, good for 2 1/2 hour!

[Violet M]

Holmb, I'm sorry your surgery made you worse. Surgery is definitely considered to be a last resort and I agree you should only do it if your pain levels are high and you have no quality of life.

I noticed you haven't tried pulsed radio frequency ablation or intrathecal pain pump yet. These are options to consider. Also, are you sure you truly had a nerve entrapment? Maybe there is something that was overlooked before PNE surgery such as tarlov cysts?

Violet

[carolynm]

I'd also ask if you gave had the typical diagnostics, including imaging. Who did your surgery and where were you entrapped? Did you have proof if entrapment before deciding in surgery?

Cryoablation is my next step. I had temporary results with prfa. This may be no different, but my choices are slimming down as well.

C

[holmb]

By holmb.
Violet, Carolyn I sent you a reply "save draft" but it went to neverland,What to do? What are symbols above and Smilies on right side for? I am not computor literate!

[Violet M]

Holmb, If you go to the User Control Panel (upper left) and then go to "Manage PM Drafts" you can click on "Load Draft" to continue working on your draft. Then click submit to send it.

If you click on a smilie on the left it will be put into your message. You can click the "preview button" at the bottom of you message to see what it will look like before you submit your message.

Violet

[holmb]

Violet--I don't know what pulsed radio frequency ablation is , or what speciality does it. Mayo suggested baclofen pain pump which I have refused so far, but instead take high oral dose gabapentin. Surgery by Dr. Antolac, who is now retired I have been told. The thought has crossed my mind . can entrapment be elsewhere in spine than alcocks in lower end?

Dr. Antolac has a wealth of information that may not have been given to successors. He asked a lot of questions.

Have you heard of other members having perineum pain at same time as pain on bottom of feet? This seems like a short circuit of nerves. Mainly while bending over after standing. That is one of worse pain.Thats when its time to ly down.
holmb
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[MrsKris]

Violet--I don't know what pulsed radio frequency ablation is , or what speciality does it. Mayo suggested baclofen pain pump which I have refused so far, but instead take high oral dose gabapentin. Surgery by Dr. Antolac, who is now retired I have been told. The thought has crossed my mind . can entrapment be elsewhere in spine than alcocks in lower end?

Dr. Antolac has a wealth of information that may not have been given to successors. He asked a lot of questions.

Have you heard of other members having perineum pain at same time as pain on bottom of feet? This seems like a short circuit of nerves. Mainly while bending over after standing. That is one of worse pain.Thats when its time to ly down.
holmb
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Hi Holmb,
I have experienced foot pain as well, during a pelvic spasm either foot will cramp up and I also know this means I have to rest or it is just going to get worse. I have asked many times if and how the feet can be involved and was told the feet were not involved until recently. I believe it was Dr. Hibner's Physical Therapist who told me that the pain centers in the brain for the pelvis and the feet are next to each other and can cause a cross over effect. As if the pelvic center in the brain that reacts to pain gets overloaded and "spills" onto the foot pain center of the brain. Of course this is a theory.
My personal opinion, and this is just a theory too is once the muscles tighten up a cascade effect happens. My thinking is if a muscle in the pelvis tightens up when it is not supposed to, then the other muscles it reacts with are being pulled on as well, creating foot and/or leg pain. If my left side is having a spasm then my left foot cramps up and vice versa. Also, be careful that you are getting enough vitamin D. I know that might sound crazy, but when I was in full blown pain and could not get out of the bed I could not eat much and did not get any sunshine. I came down with a clinical case of vitamin D deficiency and this causes full body cramps and it came to a head when I went two weeks without being able to sleep because of it. As soon as I started taking vitamin d supplements I slept immediately and the cramps lessened. Just a thought.
You are not alone in wondering how and why the feet seem to be involved!
Best Wishes,
Kris

[holmb]

Hello Kris--
Thanks for reply, Years before most of my problems were diagnosed, I was getting right toe pain, ever so slight that it was not a cause for concern, and when I asked the medical people I basically got , "don't know" so I guess were all different.
holmb

[bikelover]

Its possible that you could have two things going on at the same time ?
Have you been checked for sciatica? I now know I have it. I was told I had PNE. I never tought it was sciatica, as it normally travels down the leg to the feet. In my case the pain goes around anus, butt and stops at the buttcheeks. I would check the usual disk stuff, but then I will take a look at the piriformis or internal obturator muscles.

[nyt]

This is my thoughts on the foot pain as I've had it since early on. Most of us have spasms of the pelvic floor and piriformis. Spasms of the obturator internus muscle causes pain in the adductor muscles because the obturator nerve runs through the obturator internus muscle. Then the adductor muscles spasms and the branches of the femoral nerve runs through the adductor muscles which will give you pain in your heels from the saphenous nerve. If the glutes and piriformis spasm then the sciatic nerve is affected which will give you multiple places in your feet to have pain.

I know my PT told me she has many individual with very tight pelvic floor muscles that complain of foot pain and has found when the muscle spasms settle down in the pelvis the foot pain goes away. She was quite puzzled by this. I ran my theory by her and she said it made perfect sense. I told her, "Of course it does. " Personally, to me it makes more sense than the cross talk within the brain.

I have always been surprised that the doctors don't think about this as it makes perfect sense.