Health Organization for Pudendal Education

Hello,

My name is Jeff Brown. I have suffered from PNE for more than 30 years. Before seeing Dr. Morar, who practices in Dayton, OH, I had undergone two previous back surgeries, multiple injections, acupuncture, physical therapy, many different drugs, and countless home remedies without success. The problem first began, when I was 16 years old and progressively got worse as years passed. By the age of 25, I could no longer wear anything with a waistband. Consequently, I have worn bib-overalls every day of my life, for the past 23 years. The nerve became so inflamed, I could no longer wear my underwear. I could not sit for more than 2-3 minutes in soft furniture, could not run, or even push the clutch pedal in order to drive a vehicle with a manual transmission. Simple motions such as sweeping a floor with a push broom became impossible. These weird symptoms made me become hesitant to tell Dr's. Many believed that I was just out for disability or an easy way out.

I refused to give up and finally came across Dr. Morar and his practice. I had nothing to lose and everything to gain by trying this new technology. Dr. Morar was extremely patient, sympathetic, and very quick to act on finding a solution to my problem. Within two weeks of my initial appointment, I received my trial stimulator, and within one week of the trial, I received the permanent stimulator. Since the procedure, I have noticed about 80% pain relief. I can once again wear my pants and underwear, and am seeing improvements every day.

If I can help any one, in any way, please contact me at jeff_brown@darke.k12.oh.us. I would be more than happy to share my experiences, results, and Dr contact information.

Thanks for posting your positive neurostimulator experience, Jeff. Hope you continue to do well.

Is this the doctor?
http://www.youtube.com/watch?v=KIsJ-5N-uOI
http://tinyurl.com/cy7wc28

Violet

Hi jeff
So pleased your getting ease! I am very interested as my spesialist( mr baranofki I'm from England has sugested that is possibly the route he will take if my next injection( in alcocks canal ) is not successfully. I have had so many surjuries( some not necessary) that I am so full of scar tissue my chance of successfull surjury would be poor. As I am going threw a bad episode I would embrace the simulator at moment!!
The questions I would like to ask jeff is roughly how big is it to look at ( this is not vanity) I'm just curious) does both having the tempory one, then the permanent one take you long to recover from the prosidure. I still have to work , I'm a hairdresser/artist in your opinion would it impede me? Lastly did the pain reduce noticeably after the trail one was fitted?
Thank you so much for letting me ask these questions !
Keep improving jeff
Anne smith

Jeff

Would you like to expand on what type of Stimulator you have trialed and fittted...is it Medtronic or Boston SCientific?
I have a Medtronic Restore Sytem implanted nearly five years ago. If you dont mind I think it would be better to move your post to our Neuromodulation Section to keep the posts relevant to topic?
Where are your leads placed? Any further information to different doctors using SCs is a good advantage to this website?

Anne Smith

Please take time to read the threads in our Neurostimulation threads where you can read about the actual size etc of these units......if you have pain you wont care about the actual size of the units which are about 2.5 inches wide and lomg....they are not that prominent in normal clothing. The main thing is if they help with your pain that is the main thing!

Jeff

I am so happy for your pain relief! Praise the LORD!!!

Also, I am one of the Pelvic Messengers and this doctor sounds promising--- can you please email me his information and your experience with him?

fightpne@yahoo.com

A's Mommy

God bless you

Hi...to all
thx to Jeff and Amanda for posting the successful neuro-stimulator story.
I hope that it is working well for you.
Guess I wiil check the section on the devices for more info.
My pain levels lately have been beyond description incredblle anal pain that we are trying to find meds to help.
My doc and I are adding a new med,but
in the event we need it (I pray not) but I want some qualtiy of life back I am in so much pain now, I dread everyday.
My doc and will dicuss them on Friday,so I wan to learn more.
Thx again for info.
Will check out the section on them
Besof of luck to you and thx.
Kathy

Kathy, have you tried a ganglion impar block yet? It might be something you want to try for anal pain.

Violet

Hi Violet,
No I haven't had that block yet, but I remember my docs suggesting it as a possiblity back in 2009 when my issues were mainly urinary.. prior to major sitting and anal pain.
Back then well known Pt I ad travelled to see had suggested I get a superior hydrogastric block-- -a series of blocks to address the sympthetic nervous system to calm my urinary urge. So a doc in NJ gave me a series of blocks that didn't help..including pudendal nerve block,according to my notes. It was around that time my sit bone pain really started to kick in. Anal pain came on in 2011.
Anyway I see my doc tomorrow and she wants to get me out of pain and an anal block is what she had in mind...
I will ask her about Ganglion impar block as I know she is famiilar with them...So this would target the anal area?
Thx so much for the suggestion!
Kathy

Please tell us more about this procedure as some of us( including me) are not good candidates for more surgery. I have had six pelvic floor reconstruction surgeries so please tell us all that you can about this procedure. I feel desperate to find help. Grammy

Hi Grammy

If you take a look in the Neurostimulation threads you will find my experiences of the surgery etc. The actual surgery to trial a stimulator is not too invasive, its all skin deep, with an incision in the spine of about six inches on either side of the spine and an external lead exiting the body with a one inch incision; the actual implant if follows immediately after trial involves an additional 6 inch incision in the abdomen. The main thing to bear in mind is that to get the leads under the skin to the abdomen involves tunnelling under the skin and this is the painful part in recovery for about three months.
There is no huge bleeding issue with this surgery however of course there is always an infection risk, this was for me prevented by keeping dressings on the wound for approx 2 months post op. Any infection in this area would lead to infection in the epidural space and therefore could be fatal.
I was told of this and took the advice accordingly; no swimming no bathing in a bath and no water on the wound for 2 months; with waterproof dressings this was not a big deal to be honest as the relief from a stimulator far outweighed the risk of water ingress. During my Trial which took 6 weeks I couldnt have a shower per say, I did wash but had to make sure that it was done in stages and not in the traditional manner.
If you want to know more please feel free to contact me.

Amanda