Dr. Dellon, and docs in MD.

[seawalker]

I live in Marayland and just noticed Dr. Dellon. I would like to stay close to home as I am in too much pain to travel.

Does Dr. Dellon only do this Dorsal procedure, does he do any pudendal testing or blocks? Does he accept any insurance? I called my insurance and he is no longer in the blue cross federal network. Also, Dr. Dellon wrote about a 3T MRN at Hopkins, Im guessing Dr. Potter is the only one who can recognize PNE? I am going to see dr. marvel as well, but I am in too much pain to travel to far at the moment.

[janetm2]

Jason,
I am not sure of the range of work Dr Dellon performs but if you have dorsal he is one of the few or only one. He does not accept insurance. Dr Marvel was able to diagnose my PNE before I had the 3T MRN at hopkins. He had me go for the MRN before sourgery he said to rule out any other possible issues. I may have been clear cut case from info fromPT on tight ligaments (the 2main ones discussed around the forum especially about whether the are cut and/or reapaired or not) pressing on the pudendal nerve. Also the non-guided blocks Dr. Marvel did on me my first visit with him (he may ask if you want blocks on your first visit) showed some improvement that evening then CT guided blocks at Univ Maryland Med center(Baltimore by DrHoward Richard) which showed100% improvement/relief that evening. FYI about Dr Marvel he does not do surgery on everyone, only those people that have severe loss of quality of life. His example of a denial was a woman that only had 2or 3 two minute pain episodes a day. In my case I already have chronic foot pain impacting my quality of life and the PNE was impacting my work, degrading that and my day to day activities. The sitting (20+ years may have added to PNE diagnosis) was how I counteracted the chronic foot pain by allowing me to use a wheelchair or scooter for vacation, shopping at malls, museums, etc.
best of luck and others can give you more details on Dr Dellon.
Janet

[shawnmellis]

Hi, Dr. Dellon is the only one I am aware of in the U.S. who does the dorsal branch of the pudendal nerve decompression surgery. I think he is also starting to get into doing pudendal nerve surgeries.

Shawn

[nyt]

Dr. Dellon is doing pudendal surgeries besides the dorsal branch. I don't know how many he has done. The surgical approach is individualized based on where Dr. Dellon believes the entrapment is located. Dr. Dellon is probably knows the neuroanatomy of the pelvis better than anyone I met. Well, Dr. Howard is right up there. The only downside, he doesn't take insurance and he is expensive. I think it is between $12,000 - $15,000/nerve.

[jocelyn]

I am scheduled for a 10/4/11 consultation & 10/10/11 surgery with Dr. Dellon. I have been in severe groin pain for 5 years!A recent MRI indicated I have a varicose vein tangled in my iliohypogastric nerve as well as my c-section scarring. I already had the nerve block done by my gyno. I just e-mailed him asking if he will actually remove my iliohypogastric nerve, ilioinguanal nerve & varicose vein.

HAS ANYONE HAD THIS TYPE OF SURGERY DONE BY DR. DELLON? ARE THERE ANY SUCCESS STORIES? NON-SUCCESSFUL OUTCOMES?

Please indicate!

Thanks,
Jocelyn

[donstore]

Jocelyn,
There are a couple of fairly extensive new posts on surgery with Dr. Dellon over on tipna.org. We haven't heard much from his post-op patients here so you might want to take a look.

Don

[AliPasha1]

Hi Don,


Didn't you have genitalfemoral nerve neurolysis surgery from Dr. Dellon and how are you feeling?

Thanks,
Ali

[donstore]

Ali,
That was Jon on tipna. His resting pain is a little better but nothing dramatic.

Don

[AliPasha1]

Hi Don,

Another thing that the improvements that Jon Swift is describing on TIPNA after his dorsal nerve surgery are identical what I felt after the dorsal nerve decompresssion surgery.Excellent Urinary flow and a normal erection as well as tingling for about three months in the Pubic ramus region.The tingling has subsided but the erection has become a distal memory as well as the urinary flow has somewhat slowed down.

However, whenever I had a perfect erection it was being pulled by something at the ischial tuberosity probably the Pudendal nerve Entrapment which was still entrapped.

The Penile paresthesia hasn't improved because the burning is radiating again from the rectum all the way to the tip of the Penis wich was my original complain from the beginning.

Hence,the main probelm is still the Pudendal nerve which was never addressed properly by Dr. bautrant.

All the best,
Ali

[AliPasha1]

Hi Don and everybody,

This is what LottaNerve wrote on TIPNA.She is having her third surgery with Dr. Dellon and his price has gone up from US $15,000 to US $18,000 per nerve now.Secondly ,she is stating that her cluneal nerve and Posterios Femoral cutaneous nerve became entrapped in scar tissue after Dr. Hibner's TG surgery .I don't know what Dr. Hibner has to say about this.

Following is the text from her post .

Hi everybody, Hi Guggi!, hi Greg!, Don and Jon,

Some of you I know from almost two years ago when I first crawled up on the shores of TIPNA. This has always been such a great forum for me and I appreciate it.

Jon, I wish you success with your perineal nerves - Dr. Dellon has worked on some of mine that were "wonky" - which I go into below - but he would never cut the pudendal nerve, no doctor would.... it is a main nerve.

I have been afraid to post very much about my surgeries with Dr. Dellon because I know he is a sore subject for not taking insurance. It is impossible for some people to come up with that kind of money for surgeries - we're sick for one thing! - and I don't know about you - but my resources have just been drained since I have joined the disability set! But I also feel like I came close to not wanting to stay on this planet anymore, so if there is any way I can get the money, I decided that was what I had to do.

I have not spoken with Dr. Dellon about this but I had a discussion with a friend of mine who understands insurance, and she said this was the only way Dr. Dellon could do the surgeries he wants to do - he is developing custom surgeries that insurance cos probably view as experimental in some cases. The other thing Dr. Dellon is free to do is change course during a surgery if he sees a problem. If a procedure was already pre-approved by insurance and he decided to change the surgery, that could affect insurance. So by not even dealing with it, Dr. Dellon is able to "hit the ground running" so to speak, and not worry about any contraints on his decisions during surgery. During my surgery, for example, he said he had done a procedure thats never been done before, when he cut the weird "shoot" that was coming off the perineal branch of the nerve and growing into the muscle wall of my vagina. He said that was not the usual pattern of growth for that nerve, and the reason it was sending those pain signals that felt like a knife is because it WAS like a knife, growing into that area near my urethra for no reason. I no longer have that knife pain there, which is heavenly. However, even though that pain is gone I still have a lot of pain through my whole pelvis and left buttock. I jokingly asked Dellon if he could just continue to remove nerves one by one in my crotch, kind of like electrolysis! ha ha - I think if I could have had surgery 10 years ago it would be a different story.. I have just been suffering for too long and my brain/body needs some time and PT and who knows what to re-train it.

Guggi - One side in front was $15 K, unless it went up to $18 now - I think it depends on how many nerves he is going to work on during the surgery. And I'm on Medicare, which does not pay anything on Dellon's surgeries - they were very clear with me about that up front. On my first surgery, Dr. Dellon "threw in" an adductor fasciotomy (he released scar tissue from a groin pull I suffered when I was younger that prevented my leg from opening all the way.) This was a total fluke; I wasn't expecting it. I had a pudendal nerve release from the front. See page 382 in his chapter to see my surgery. The best photo is the one with the arrows pointing at my zig-zag pudendal nerve, which was dented and discolored when Dellon decompressed it. It is hard to see because it is going back in the Alcock's canal, but when I turn my screen light on bright I can see it. After the surgery Dr. Dellon and Dr. Tollestrup, who assists in his surgeries he does in Nevada, both were amazed at how dented and kinked my pudendal nerve was on the anterior (front) side of the Alcock's canal. I think it had been like that for a number of years, slowly becoming more and more painful as the nerve became more damaged. Now it finally has a chance to get better! I also had a couple of weird offshoots from my perineal nerve, growing toward my vaginal wall and my urethra - these wonky nerve branches were excised and now I am numb where they were. aaaahhhh relief. Although I still have that weird, icky "ghost" kind of pain that goes up and down in intensity - - I pray that dies down over time.
Now if my left buttock can become pain free, I have hope of walking and standing and sitting again!!! Although I also have Interstitial Cystitis, which is a pain that may be related to the nerves or not - the medical community does not know - but my bladder also hurts all the time. Since the urethra and bladder are innervated by the perineal nerve, I am very hopeful that all the "clean-up" work Dr. Dellon has done on my perineal nerve will show results. The dream would be that the bladder pain slowly goes away as all the nerves calm down and stop firing pain messages at my brain!
------------------------------------
I am going to copy and paste another post I just wrote -- This was in response to Kit, who asked about Medicare covering Hibner's surgery:
Here goes:
Kit - as an addendum, I thought i would suggest that you look at page 348-349 of Dr. Dellon's Chapter 12 on Pelvic Pain.
I am "D" in those photos, and Dellon explains why the incision does not reach the Alcock's Canal. He does his incision closer to the buttock "crack" - as the lower part of the incision is over the Alcock's canal.

If I could do it over I would not have had my Hibner surgery; I would have had the pudendal nerve release with Dr. Dellon instead. As it turned out, Dr. Dellon is the one who found my problems anyway. He addressed my frontal perineal pain with an incision in front, along the pubic ramus canal, which is above the alcock'c canal. There he found my problems -- my pudendal nerve was smashed in front and I had some weird offshots growing sideways from my perineal nerve -- that's where all my pain came from all these years. Hibner's surgery through the buttock did not touch my real issues; although he assured me that the approach from the back would help my pain in front.

My Hibner surgery caused new pain with my cluneal nerves and PFC posterior femoral cutaneous nerve - - because they are now trapped in scar tissue because those nerves are right under his incision. Dr. Dellon marked my butt where I am feeling terrible pain and it is right over the incision.

The problem with Dellon is that he does not bill insurance, so it means coming up with a lot of money, and not everyone can do that, or wants to. I borrowed and drained what savings I had for "retirement" - ha! I won't have a retirement anyway.

Sorry to say this and I don't want to cause controversy. I think Dr. Hibner is a caring man and has done a lot for the pelvic pain community; it just didn't work out in my circumstance -- and I think Dellon is a better surgeon for those of us who have pain in the front areas, rather than the buttocks.
Peace and love to all ....
---------------

Now I am getting ready for one more (final) surgery. This is the surgery described in his book on page 367 - the posterior femoral cutaneous nerve and the inferior cluneal nerves. Those suckers are killing me right now! If I can figure out how, I will put up some illustrations that show the nerves very well....

Peace and love to all....!

_________________
8/2010 TG surgery, Dr. Hibner.
3/2011 - Dr. Dellon, PNE entrapped, front Alcock's canal
9/2011 - Dr. Dellon, Perineal nerves removed left side urethra. Relief!!!
10/ 2011 - Posterior femoral cutaneous & inferior cluneal nerves, left buttock