Surgery upcoming with Dr. Hibner

[helen1000]

If you checked and ruled other things like misalignment and hernias etc. it is probably time for operation. I do not know if Dr Hibner cuts ST ligament. It is important for future pelvic stability so try to find out.

Good luck and best of everything

Helen

[PatrickB]

I will update everyone next week. My surgery is in 6 days. My sitting pain is the worst it has been in 5 years, so I refuse to sit longer than 5 minutes. The good news - my fitness level is very high and haven't missed a workout in weeks. Other than sitting, life is good....I am impressed with the entire staff at the Center for Chronic Pelvic Pain in Phoenix. They are very knowledgeable about PNE and extremely supportive. My confidence is high Dr. Catellanos will find the problem and fix it. Thanks to everyone that has written me.

[helenlegs 11]

Good luck Patrick.

Take care,

helen

[PatrickB]

I had my pudendal decompression surgery on Monday, 3 days ago at St. Josephs Hospital in Phoenix with Dr. Mario Castellanos. I will say that the physicians and staff are extremely knowledgable and experienced with this procedure. I am very happy with my hospital stay and surgery. No doubt, they have fine tuned this method. The procedure took over four hours under the microscope in the OR. He found the nerve to be scarred into the ligament and it was clearly compressed and damaged, exactly in the location where I continuously traumatized my pelvis while barefoot skiing and jumping. He cut/repaired the ligament and placed a protective sleeve around the nerve to protect/heal it and prevent scarring. I also had my platelets injected back into the site. I'm on a pain pump right now and relatively comfortable. The plane ride home was pretty brutal but I gutted it out. I know it's a long haul ahead.

Obviously, it will be weeks and months before we know the full outcome, but it sure feels good that there was an identifiable problem and solution. After four years of pain and inability to sit, I am very hopeful for a pain free/reduced future. I highly recommend Dr. Hibner and Castellanos and the Center for Chronic Pelvic Pain at St. Josephs Hospital. This is a wonderful medical center and clearly the world leaders in PNE expertise and treatment. Thanks.

Patrick Bradley, Ph.D.

[helenlegs 11]

It looks as though surgery was definitely your only option for any chance then Patrick, all of the physiotherapy in the world would not have helped fix that.
Good luck with your recovery.

Take care,

Helen

[kathyd]

Patrick
Thank you for posting your story. I ha assumed from my research that Dr Hibners team was the one was to consider for possible PNE surgery.. and you have confirmed if it. I wish you all the best in your recovery!! I hope you will do great!
I had a friend who was a barefoot waterskier back in the day (in my 20s!) and I can understand how the pelvis could certainly take a beating in that exciting sport.

I have symptoms which sound similar to yours ..severe rectal pain, unable to sit at all since about 2011, sitting pain began in sit bones --2009..
IC- bladder issues - (which are still present began in 2006..)
My sit pain came on gradually , but we think that a peripheral nerve surgery I had to help with the sit bone pain ...caused either scar tissue and or more nerve damage----hence the rectal pain ..Ive had since.
I am debilitated and like you desperately want my active life back. Im a busy wife and mom of three active happy kids
Oral pain meds have been useless..
I have pursued everything under the sun for answers. I even saw Dr Kirk Andrew for ESWT Therapy.... ( I did have some temporary mild relief while in Canada for treatment)
but flares up right after.
For now pain relief is our main goal ...have finally found a decent pain doc and am pursuing pain pump trial and /or other aggressive measures..

Once the pain is under control ..I want to take a break from the search and give my family a break form almost 7 years of this.
I can't be sure I have PN or PNe as dxs have varied and I don't respond to blocks... A hernia is one of the possibilities we started to pursue among others.
I've never been a serious athlete and I never had atraumatic accident or injury... all I can think of are one or two simple falls that happened many many years prior to my issues.
I was not injured by the fall. So I m a mystery.

I've had tons of PT and been told that more will only flare my Central nervous system ....so will give that a break.

For now I will take a break from surgical options based on the result I had with the above mentioned one.
But will consider Hibner's group if I ever go in that direction again.
(the wait to be see them was so long and I didn't know how Id manage the cross country trip (I live on the East Coast) but if its worth it I'd do it..
Please keep us posted on your recovery. Thanks again for telling your story!
Again I wish you all the best!
Kathy

[quilter]

Good luck Patrick! Having had TIG with Dr. H myself, PLEASE take it slow in recovery, don't do anything that causes pain now or caused pain preop, even if you're having a good day or week. Pushing it will get you in trouble. Recovery is a true roller coaster ride: two steps back and one forward, as Dr. H told me before surgery. I'd have a few days/weeks of pain in one place, then that would improve and something else would start up -often in places I'd never had pain before, then it would morph into something else. In your brain you have to separate the nerve healing/regeneration pain from your regular pain. The only way I could do that was listen to what my PT was finding, believe in the anatomical improvements she saw in my pelvis, and just plod forward. Some of my issues were cured in the hospital and never came back, some came back 2 years postop, but we're all different in our history and anatomy. Hang in there!!!

[cconlan]

Hi Patrick,

I just wanted to give some friendly advice...go easy on the workouts for awhile.

My situation was very similar to yours. I have been active my whole life with sports, working out, etc. I haven't been able to sit comfortably for almost a 1 1/2 years due to PNE. I had surgery on March 27 with Dr. Antolak in MN, and I am a little over 2 months post op. My pain is a little worse than prior to surgery and I have more groin/perineal pain. Prior to surgery my pain was mainly on the inside of my left glute near the rectum.

I figured it would be ok to resume some lighter upper body workouts, but after a couple weeks, it seems that was not such a good idea. It seems to have increased my pain, probably due to the tightening of core muscles during sets. I thought only lower body workouts would need to be avoided during recovery, but looks like I need to hold off on all workouts for awhile.

Please post and let us know how your recovery is going.

Thanks

[rh1594]

Hello Patrick,

How are you faring post-surgery? There many of us who would greatly benefit from your feedback. I myself am considering traveling to see Dr. HIbner soon for a
consultation.

Thanks much,
RH

[openup]

Dr Castellanos is very kind and very thorough. He's done all my procedures. PFCN block
Did confirm that PN is my true dx. Having Pudendal Neurolysis surgery this coming
July. Anyone know about the TG surgery versus Pudendal Neurolysis. How's it differ?