New Person with Pudendal Nerve Disorder

[ritak]

MN MOM, Sorry to hear you have had a setback. Those are hard to handle. Seriously go to the lisa beachy website. There are some really cool free meditations to listen to. If not have yourself one pity party day,I had one for myself on Monday! Cry a lot and get out the frustration. But nly one pity party day though!!!! You will get better!!!! I myself am on a cycle of a few good days a few bad days and there is no real reason for any of it. My appointment with Beth went very well yesterday. She worked mostly on the obturator internus muscle on my right side, BINGO! This is my 3rd visit and I feel like she is getting to know my body and work on some stuff. I started working my hamstrings and abs and working on my poor posture. Dr Antolak would highly disagree with what I am doing, but a series of shots and some surgery will not get me better. I have weak muscles some over stretched from ballet and some too strong that it thows me out of balance. I have whats called lordosis, aka swayback.Bodies are meant to move not just lay around. His philosophy may work in some cases I just dont think it would have in mine.If all of my ideas on what I think is wrong with me fail maybe I will find myself back in his office but I doubt it.This issue can be so complicated. I still feel and am hopeful that with working with Beth and my other PT that I can get better. Beth knows her stuff. I know its going to take a long time and a lot of work on my part and a lot more of my money. Knowing all of that I pray for patience! I think that as you continue with Beth you will start to see more good days than bad. It never just happens overnight. Our bodies have been working on this probably for a long time. I hope you recover quickly and try and find some good with all of the bad!
Take Care,
Peace,
Rita

[ritak]

Jim,
I have a website you may be interested in as well as your staff.
Posturedontics.com
Bethany Valachi is a PT and her husband is a dentist. After her husband had some work related back issues she got into specifically working with the dental community with ergonomics.She has a lot of info on her website in regards to ergonomics and dentistry for the whole staff. I was turned on to her via the Adec rep which will be supplying my new stool at work. He himself was extremly helpful also.For myself Adec had the best stools. Hope you are doing well.
Have a great day,
Peace,
Rita

[Lernica]

Ritak,

I notice that you are/were a ballet dancer. Have you ever got an MRI of your hips? Apparently dancers are prone to labral hip tears, and there appears to be some link between tears and PN. A hip surgeon would be the one to see to order a hip MRI and to make a proper diagnosis.

[ritak]

Lernica, Thanks for the info. I did not do ballet professionally but as a activity/sport from ages 3-35.I have had an MRI done and it only showed some early degeneration of one of my left hip.The hip surgeon did not feel as though I was a candidate for any surgery. I only had it done to rule it out. I am working with 2 wonderful PT's that seem to be helping.I am now keeping a log of what I do how I feel and how many pain meds I have to take daily. I need to see my progress in writing since I forget easily
So far in the past 15 days I have had 5-6 pretty good days so I guess that is progress!!!!!!
Thanks for your input!
Peace,
Rita

[konedog4]

Report on 4th injection with Stanley Antolak: It has been 7 days now since last steroid injection into area of the SS and ST ligaments. There has been no improvement or change in my condition. This has been true of the previous two ligament area injections. The only injection that helped me was the Alcock's Canal injection. It took away all my urinary symptoms. I still have perineum tightness and mild anal symptoms. I will not have any more ligament injections, but will consider another Alcock's canal injection. Next month I begin Physical Therapy with Beth Stidham. I continue to walk/run and swim for physical exercise. In my daily life, I still avoid sitting as much as possible and I cannot lift with my legs in a squatting position.

Jim

[MNMom]

Jim,
It's good to hear of your progress. I have my 3rd injection in two weeks into the Alcock's canal. I have tried but I cannot understand the diagrams or make any connections as to where my entrapment may be located. I just know it was affiliated with running, squatting and very tight adductors. Did you suspect your entrapment was in the Alcock's canal region? If so, how did you suspect that was the case?

I flared up Valentine's Day, got slightly better on Sat, then went way downhill and have been laying in bed the last two days with Vicadin, Flexeril and Gabentin providing very little relief. Since my last injection, though, pain is much more localized and less radiating. I am hoping and praying the next injection will give me the boost it gave you, Jim. In the meantime I will try to be patient and positive.

MNMom

[konedog4]

MN Mom,

I hope our Alcock's canal injection is a success. It is painless, at least it was for me. And it is quick! They had me in and out of there in no time flat. Here's hoping you get relief!

I suspect the Alcock's region for me because I injured that exact location while riding my exercise bike - right in the perineal area. I wish there was a simple surgery to go in there and free up the compressed area of the nerve. I have bilateral entrapment based on my motor nerve latency tests.

My progress has its ups and downs too. Funny how the up days can up one's mood too!

I have been swimming and this seems to relax the perineum and I feel much better afterwards. So I try to swim almost every day. When I start to hurt, I lay down for a few hours and read. I am lucky in that I do not have to take any pain medications. I try to avoid sitting as this always makes me worse.

My greatest frustration with PN disorder is the limitations to one's lifestyle, and not knowing what to do to make it better. It is certainly a frustrating disorder. I try (and am successful some of the time) to concentrate on what I can do rather what I can no longer do.

I know that nerves take a long time to heal, and I try to visualize healing and be patient, and pray without ceasing!

Jim

[ritak]

Hey MN Mom and Jim,
Sounds like the two of you have had some ups and downs. I hope that between your injections and anything else that you two do that you continue to have more good days than bad.Things are going somewhat better for myself. I have seen Beth 4 times now and she really zeroed in on the Obteratur Internus muscle on my right side. She got a huge release and that made for a few days of almost painfree days. A few days later my other PT Kelly released the SI Joint on my right side which also made a great difference. I have been stuck in that area for so long. That in of itself was huge. I could move again!!!! WOWEE, I was happy happy happy! Low and behold though that all moved back to its comfort zone where its been for many years and now I am having some pain again. I am hopeful to know that I am headed in the right direction and with the help of two great PT people and I can beat this. Its been like this for a long time so I know I need patience. Sort of difficult when you think of good days in terms of how may pain meds did I have to take today. I am keeping a journal so that I can see my progress and not get discouraged on those bad days where all i do is lay around in pain and pop Vicodin. This week I will be seeing anothe PT person that works with a technique called MAT, muscle activation technique. It will be to strengthen my gluts and hamstrings and get those muscles fired up so that I may use them properly to walk. Some of my other muscles have taken over to do that job and that has been part of this whole issue for me. I am just for now doing the PT exercises that have been given to me, stretching and some ligh walking. Everything else seems to aggravate me.I will keep you both posted as to how those sessions go. I hope the best for you both.
Peace,
Rita

[konedog4]

I had a setback of sorts this past week. I was feeling much better so I increased my activity. After my daily swim, I began stretching my legs. I saw an exercise stretch on the internet that is supposedly safe for people with PN that involves gently stretching the perineum floor by allowing the legs to stretch laterally in a "V"shape. Done in the water, with no gravity, this can be a very controlled stretch. Unfortunately for me it resulted in increased perineum pain and more pain when sitting. Funny though how it did not hurt whatsoever while stretching, but after doing this stretch for perhaps 3 days, I began experiencing a slow increase in pain that peaked yesterday. I took the entire day today off and just rested the perineum. I went on a walk this evening and it felt much better. Lesson learned for me is that I cannot stretch or I get much worse. I recall trying to do the usual toe touch stretch last November, and then got much worse in terms of symptoms to where I could not hardly sit for even 15 minutes without severe discomfort.

jim

[ritak]

Sorry to hear of your set back Jim. I hate when that happens. All is going well and then you do something and your body is back in pain again....crap! I just decided to stick with just the exercises the PTs are giving me because a week ago I did one of my exercise DVDs and ended up like yourself, in pain for 3 days. My husband was funny and wrote notes to me all over the house about ...be smart with your body,less is more, etc... He knows how I am.I am feeling good and try something more or different and I am 10 steps backwards. I have learned my lesson as well.I hope that your body Jim recovers quickly.
Peace,
Rita