PN Surgery?!

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AroraNightfire
Posts: 60
Joined: Mon Mar 12, 2012 9:39 pm

PN Surgery?!

Post by AroraNightfire »

If you havent told me about your surgery experience please email me AroraNightfire@yahoo.com Im considering the possibility of trying it. Hibner ppl? Conway? Antalok? Weiss? Anyone?
Princesspokie
Posts: 24
Joined: Sat Jan 14, 2012 7:17 pm

Re: PN Surgery?!

Post by Princesspokie »

Arora, I am scheduled for surgery next Monday the 10th. I only need my left side done. Dr. Antolak is my surgeon. I will follow up after to let u know how things arebgoing...stay strong-Nichole
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: PN Surgery?!

Post by HerMajesty »

Just to clarify, the surgeons you listed (BTW last I heard Weiss did not do surgery, if we are talking the San Francisco Weiss) cannot simply be rated in terms of skill level - they all use a different approach / technique. Personally if I had to get a decompression (which I do not), my choice would probably be based on how the ligaments are handled...since I am a strong believer in the importance of the integrity of the S-T ligament: We had a HUGE debate about ligaments a year or two ago and it got ugly and got locked so I am NOT trying to get that started up again!!! If you want to know what all the fuss is about the S-T then search for the old thread. But there is also different approaches (TIR, T/G). I never explored the pros and cons of since I was not a decompression candidate. All the surgeons have their successes and failures but I think it's important to start off your search realizing that you are not looking for who has the steadiest hand, you are looking at exactly WHAT they will be doing to you. I believe you had mentioned some possible dorsal nerve problems and I am not sure all the surgeons even address this area as part of a standard decompression; some might offer that as a separate procedure. I am not going to even pretend to be well informed on who is doing what, as some of them change their technique of choice over time, but be aware the most relevant question is the nuts n bolts of the techniques used by each surgeon.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: PN Surgery?!

Post by carolynm »

We have only 1 patient who reports an 80% improvement over on the fb site. Please be sure you know where you are entrapped and that you are having the correct procedure done for that area. Surgery in my mind should not be considered unless you are ready to jump off the bridge. We just do not see great results, friends. And the surgeons are not being honest about success rates.

Just my opinions
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
User avatar
Violet M
Posts: 6713
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: PN Surgery?!

Post by Violet M »

After reading/moderating the forum for over 8 years, I have known MANY people who had successful PNE surgeries and moved on with their lives (including myself). Nevertheless, I agree with Carolyn that it's not something you should jump into lightly, especially if your pain levels are low because I know of a few people who got worse. I wouldn't go so far as to say that all of the publications on success rates are lies though or that all of the surgeons are lying. I think some of the surgeons are being honest but I think it's also possible some of them may be presenting their data in the most positive way possible. The reality is, the docs I know have more than enough business without PNE surgery so I am very careful about attributing any motives to them because they would be just fine without our business.

I also agree with Her Majesty that every PNE surgeon has patients who get well and patients who don't and that it's important to study the different methods before you decide which is right for you.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Princesspokie
Posts: 24
Joined: Sat Jan 14, 2012 7:17 pm

Re: PN Surgery?!

Post by Princesspokie »

Aroma,


Ezzi,

Thought I would give you my experience after surgery. For starters, my surgeon was Dr. Antolak, he is just wonderful and owe my life to him and a few other doctors who actually listened to me and what my body was saying. I have had 5 nerve block injections. The injections helped my right side but not my left. My surgery was Monday the 10th of September. I got to come home Wednesday late afternoon. Dr. Antolak informed us that I was entrapped at 2 different locations, the Alcocks Canal and the clamp. He indicated that my nerve was gray in color and had resembled one of which was a radiation patient. I will be the 1st to tell you I have never received radiation. He then wrapped my nerve and said my Nerve was pink before he closed my incision! I had only my left side done, which I am greatful for! I don't think I would have been able to do both at once. The pain isn't fun. Not that I didn't expect to experience pain. I will tell you I have not had one shock of pain or any nerve pain I perviously had everyday before surgery! I also had the explanation as to why laparoscopic approach isn't always the best for this condition. In order to get full visualization of the nerve and what is going on an open approach is best. I will keep you posted to my recovery if you would like. I wish you the best of luck in your future and hope one day you will be pain free!

Hoping for your recovery,
Nichole
AroraNightfire
Posts: 60
Joined: Mon Mar 12, 2012 9:39 pm

Re: PN Surgery?!

Post by AroraNightfire »

Nicole,

How long have you suffered before having this surgery? Have you emailed me before? If you haven't I would like to talk with you about your experience.
Princesspokie
Posts: 24
Joined: Sat Jan 14, 2012 7:17 pm

Re: PN Surgery?!

Post by Princesspokie »

Arora,

I had PN pain for about 1 1/2 years. I don't think I have talked to you before. You can email me If you would like.


Talk soon,
Nichole
AroraNightfire
Posts: 60
Joined: Mon Mar 12, 2012 9:39 pm

Re: PN Surgery?!

Post by AroraNightfire »

I'm happy for you really, its great news. I hope you continue to see improvement.

Its been too long for me though. I think the damage has already been done for me. I don't think surgery can correct it. I'm not willing to go through it either. Its too much of a sacrific, too much of a gamble. I don't gamble with my body.
Princesspokie
Posts: 24
Joined: Sat Jan 14, 2012 7:17 pm

Re: PN Surgery?!

Post by Princesspokie »

I'm sorry you feel that I took a gable/risk with my life! I feel a bigger risk would have been to lose my family that I love and adore way to damn much to not say I tried everything to make my life better for my family!
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