New Person with Pudendal Nerve Disorder

[konedog4]

I had a "perfect" Alcock's canal steroid injection recently. The entire pudendal nerve was anesthetized. Now, 10 days later, I am no better and no worse for the experience. I was hoping for a bit more progress in my goal for continuing improvement. My conclusion on the steroid injections is that they are of little therapeutic benefit. I believe the data shows less than 5% get better with the injections. I was hoping I'd be in the 5% group of course! I am planning on a third visit to Dr. Kirk Andrews for shockwave therapy later this fall. I have gotten better with each visit there. The major drawback of course is the cost and the time involved. But I figure that if it makes my life better, and I have improvements in less pain, able to do more things, etc., then it is well worth the time and money spent. I sure wish this therapy was available in the USA, but unfortunately it is not.

kone

[TriMaverick]

Thanks for your comments Helen. I too have noticed that stretching does not cause immediate PN discomfort but may cause significant discomfort later. When I made my PN much worse by working in the woods and lifting heavy logs, I felt perfectly fine at the time. It was several days later that I noticed something was wrong, and then several weeks later before the full force of the PN pain hit. Question: why did the pain take so long in developing? If the nerve was actually damaged, why didn't I feel it right then and there?
kone

Sounds like maybe akin to delayed-onset muscle soreness. Inflammation can build for a while. Perhaps heavy-duty manual labor requires some warming up like overt workouts. From experience with PN chronic symptoms never showed up during the activity of onset; but, later the acute symptom became chronic.

[Raven]

Hi, I am new to this. I do not have a diagnosis yet, but the symptoms fit.
I was in a MVA 14 months ago, and I herniated L3-4-5-S1. As well as a bulge in my neck at C5-6 and T 10-11.
My sacrum was untouchable for about a year. I cannot sit or lie on my back.
My primary doctor has said pelvic floor dysfunction and I did another MRi for the sacrum and pelvis.
I am hoping to get the report and Disk this afternoon.

I have had Reflex Sympathetic Dystrophy for 30 yrs now. I am female and it has affected all limbs.
This car accident has really done me in. I was rear ended hard...

My primary care doctor referred me to a PT person listed on the Hope site. So she maybe familiar with my problem.
Not sure yet.

I am looking for advice of those that have gone through this, where do I start ?
Do I start trying the PT pelvic floor therapy ?

I could go to Houston Tx as I am 1 state away.. I am on Medicare early from the RSD. Do they take Medicare ?
I read that Dr Filler has opted out of Medicare..
Any help would be appreciated.

[janetm2]

Welcome Raven,
You actually have a start with the MRI and primary care saying pelvic floor. I would say the PT is a good place since they have the pelvic floor and may see other areas to work on. Since your primary care is willing to help maybe you can print off the letter to medical professionals and the medication ifo from the homepage FAQs. Lots of good info in there on things to avoid (bending, stretching, etc which you may already be avoiding). So sorry about the accident and RSD and not sure of medicare but someone else should be able to answer that. Fyi there is no easy or clear test to diagnose PN or PNE but rather the combination of info. Nerve blocks are used by some doctors. Hopefully the MRI will help but they do not always show the nerve or any entrapment even when it may be so. Hang in there and keep focus on getting diagnosis and treatment.
Janet

[JeanieC]

Hi Raven,

The pudendal doctors in Houston took Medicare when I was there in 2010. I read a post the other day about Dr Popeney, neurologist, teaming with Dr Twiford who did my block at Sugarland Hospital. They are both in Sugarland, a Houston suburb, and are very familiar with treating PN. If you search for posts in the last few days you should find it and then you will be in touch with a couple of their current patients.

[Violet M]

Raven, since you have been in a state of pain so long maybe something gentle like aqua therapy would be good to start out with. I saw Maryflaw post about it in another post and she is from Houston although I don't know how much that helps since you are a state away. Maybe you can find someone who does aqua therapy nearer to you. With all of your spine problems it looks like you have more going on than just PN. Are there no good pain docs where you are?

Violet

[helenlegs 11]

Hi Raven,
With such a lot going on with your image-able and more easily recognised spinal problems I expect that you have pain medication in place but just to check do you have something for nerve pain? Typically antidepressant with an anticonvulsant. As Janet mentioned check through the home pages as there is a good lot of info including help with meds if needed.
Do you have any nerve compression with any of the prolapsed spinal discs?
Good luck with everything,

Helen

[bikelover]

Hello Kone I'm new here, 36, from Mexico. Been reading your post with a lot of interest. I've experience the miracles of shockwave therapy in the past due to calcific tendonitis in my shoulder. I had a pretty big calcium deposit that was rendering my whole left arm pretty useless and with a lot of pain. I had PT that didn't help, my doctor was considering surgery, until I told him I read about some successful cases on the internet in regards to using shockwave therapy to break up the deposits. It turned out, my doctor's wife had a health and fitness business, and she had a shockwave therapy machine that they used to treat cellulitis in women. He supported me with the idea and sent me for a couple of sessions along with some PT. At the end, the deposit was completely gone and I was able to recover completely.
My treatment now consists of the usual antiepileptic and antidepressant drugs. If I don't see a significant improvement in 2 weeks, my doctor told me to consider a block.
I'll probably wait a little longer for the block, but are now wondering If I should consider shockwave therapy. May I ask how was the theraphy actually applied to you?

Hope you keep improving, this is encouraging... I would love to ride my motorcycle again. I stop riding ever since I started with the pain while sitting..

[kathyd]

Hi Kone
I am also possibly interested in re-trying the electro shockwave therapy.. sometime in the future.
I spent 5 days with dr andrew and his former partner in spring 2012. I have severe anal pain, cant sit at all and have pain with standing as well.
Shockwave therapy did help me while I was there.. I actually sat quite a bit ate in restaurants etc. with much less pain..However the inflammation phase kicked in right before I left Canada, my painful issues flared and the relief stopped. Dr A.felt that I had a very tight PSOAS and needed a few visits to Canada... I also have Interstitial Cystitis, likely driven by the PN,, and Dr Andrew felt that extended treatments over time could get to the root of that. He had very complicated description of the how my issues came about.

I didn't go back for 2nd treatments mostly cause of the severity of the after pain etc..(when I got home). I was led to believe the flare-ups would be fairlyl short-lived when they first explained the therapy (must admit it seemed almost too good to be true) and they later kept extending the recovery time and the amount of visits I would need, so I became skeptical and didn't return ..But I must admit,, this was one of the only therapies that took away the pain enough for me to actually sit for a few days in a row.. So I felt there had to to be something to it??
Did you experience the "inflammation and flare up" phase after either of your trips to Canada? Could you tell us more about that phase if you would?

I am pursuing pain mgmt in a different manner now but still have kept this experience and idea in the back ofmy mind ...
I appreciate anything more you could tell us about your experiences there and the aftermath.. Thanks and good luck to you.

[konedog4]

Kath,

I never had any painful flare-ups after Shockwave treatment. Sure, it was sore, but it resolved in 1-2 weeks, and it was never that bad for me. I recall I was really sore for a week after the first session of 5 days, and was sore for just a couple of days after the second session (3 days).

kone