Dr Dellon

[Violet M]

My heart is breaking for all of you guys who have had this surgery and still are not better. Thank you for having the guts to come back and post for the benefit of other patients. It can't be easy.

I have the same thoughts as Jessica that maybe the nerve has not been decompressed adequately proximal to the dorsal nerve, however experimenting with yet another surgery would be an extremely scary thought when you have already had several failures. Has anyone had a pre and post dorsal nerve surgery Hollis MRI to determine if new scar tissue has formed?

I know one person who had the dorsal nerve surgery from Dellon several months ago whose dorsal nerve pain is still mostly gone but she is now scheduled for a second surgery with him to have the PFCN and cluneal nerves decompressed so she is not pain free yet.

I do not fault the doctors for not being able to cure us. I believe they are trying but I think it's important for them to be honest with their patients and give realistic expectations.

[helenlegs 11]

[quote="Violet M"
I do not fault the doctors for not being able to cure us. I believe they are trying but I think it's important for them to be honest with their patients and give realistic expectations.[/quote]

I agree wholeheartedly Violet, and applaud any doctor who will take the time and trouble to recognise and study this problem where so many actively ignore it.
Helen

[nyt]

One of my thoughts why pain is better for several weeks after surgery is all the anesthesia that is given blocks the nerve pain signal in the central nervous system (brain and spinal cord) and as the anesthesia wears off the pain slowly returns. There is so much about chronic pain that is not known. Even if the nerve is free now and isn't sending anymore pain signals how long does it take for the central nervous system to change back to normal? No one knows the answer to that and maybe that is why it takes years to fully recovery after surgery. It is well known that damaged nerves that sprout new nerves the new nerves aren't "normal" and have altered receptors in the nerve cells that changes their physiology. Other factors are the immune system and genetics. There is compelling new research that both play into chronic pain states. I have no answers to my questions but realize that chronic pain is a very complex problem we all live with.

[Lernica]

Here's another theory. PN pain returns after surgery because the underlying cause of the compression -- say a misaligned pelvis, a tight pelvic floor, chronically tight buttocks (in the case of neuralgia, not entrapment) -- still exists. So it is essential to address those issues too if surgery is to be successful in the long run.

[A's Mommy]

PN down under

I am praying for you.

What was entrapping your nerve?

[AliPasha1]

Hi PN_down_under,

I had to clarify something.Dr. Aszmann never expected my sitting pain at ischial tuberosity to reside or my rectal pain to decrease.

The objective of the dorsal nerve surgery was to help me with my burning in the urethera as well as Penile burning which never happened from the beginning.The only improvements which i initially saw were improvements in ED and complete normal Urinary/stress/flow.

Secondly, Dr. Aszmann never reached my distal or Posterior Alcock's Canal like he did in the case of Athena's mom.
[/b]
As far as the price is concerned,Dr. Aszmann is still very economical as compared to A Lee Dellon who in turns charges three or four times as much as Dr. Aszmann .

You might have PN which needs to be addressed.

I know one German guy who has improvement from Dr. Aszmann's surgery.His pain at the perenium is completely gone and his penile numbness is improveing.I believe that the objective of the dorsal nerve decompression surgery is Penile numbness with ED.It was never meant to address sitting pain as well rectal issues or coccyx pain.
Take care,
Ali

[LottaNerve]

Hey, I'm here - sorry I've been off the forum for awhile and not posting my results, but I've needed time to come to terms with my situation and to get the energy back to find another direction to go in.

Someone let me know about this thread so I surfaced to read it and thought it was time I posted my status.

Some of you who may know me or have followed my surgeries probably already know this info, but for the benefit of new people I will do a quick (okay, not so quick) review.

First I want to say I agree there might be something to the concept of the central nervous system being the problem for those of us who have had our "pain loop" return just months or even weeks after surgery. That has been my experience.

I am also a bit unusual compared to other PNE'ers as I have interstitial cystitis (IC), a bladder disease, as well as PNE. I wonder how that influences nerve pain, when organs are so closely involved. My IC was diagnosed first (in 1997) and I was treated unsuccessfully for many years. I kept telling my doctors I also had a knife-like pain on the left side of my vulva/vagina, but they said that was "referred pain" from my bladder. (Well, we know now that they were wrong about that!) Finally, at Stanford, I was pronounced by one of the top urologists in the country with "refractory IC" which meant "hopeless" or "nothing works." (Maybe if my PN had been diagnosed earlier I would not have advanced to the condition I am in today.)

Finally, in 2006 I was diagnosed with PN by Dr. Jerome Weiss in SF, and started down a new treatment path. Note: If I had known more about nerve blocks at the time, or at least had known the effect this block would have on me, I would have asked for a CT-guided block. There is a difference between unguided and guided blocks. A "block" is an injection into the area of the nerve in order to numb it. The kind Dr. Weiss did was with a huge needle through my butt while my leg was held up by an assistant. He had to go through many layers of muscle, ligament, tissue, in order to reach the area of the pudendal nerve with this type of block, and unfortunately, I believe it may have injured my nerve further. I felt the needle hit something inside and it was like a "pop" inside me. I thought I was going to feel the bliss of no pain and instead was awake all night in the bathtub of my hotel room, crying in pain. Before that injection, my pain was only in the front - on the left side of vulva/vagina. After that my left buttock and leg joined the pain party. The next few years were filled with physical therapy, trigger point injections (bad) and botox. oh - and along the way I tried every holistic approach as well. I tried every non-invasive treatment there was, going to some of the top PN doctors and physical therapists, and once again not responding to any treatments. In 2009 I was homebound and bedridden much of the time. My pain was unbearable, and the only thing left was surgery. I joined the forums and studied.

August 30, 2010 - TG surgery with Dr. Hibner. Pudendal nerve was found entrapped at the sacrospinous ligament. Before surgery, the risks were spelled out, and while the statistics weren't very promising, I kept remembering some people's signatures who said they were better, and one who was completely healed, and that sustained me. Dr. Hibner told me and my family that 33 percent got better, 33 percent had some improvement, and 33 percent had no improvement. Only 1 percent got worse. I felt I had nothing to lose, at the very worst I would be the same. Today I am a year and three months out from that surgery and consider myself in the 1 percent who are worse. The pain in my left buttock and leg is worse, and the pain in the left part of my vulva, vagina and urethra were unchanged.

March 30, 2011 - Dr. Dellon, Dorsal approach (incision in crease of thigh to access pubic ramus canal and anterior, or front, of Alcock's canal) - Found pudendal nerve entrapped in anterior Alcock's canal. Also found "rogue" perineal nerve in area where I had "knife" pain - this nerve was excised. The surgery was done outpatient and we went back to our hotel that afternoon. For the first 6 weeks or so results seemed promising, but as time went on the pain returned. Dr. Dellon thought perhaps the end of the perineal nerve which he had excised had moved and decided to re-do the surgery.

Sept. 13, 2011 - Dr. Dellon, same incision location, perineal nerve re-placed in "quiet" area where it would not cause pain; also, another branch of perineal nerve going to left side of urethra, where I experienced intense pain, was removed. I was so hopeful! For approx. 3 weeks I was so hopeful but the pain again started up. I thought perhaps there is a pain condition I have, that no matter which nerve was worked on, that a new pain loop would start up. I joked that I needed electrolysis of my nerves. I had one more surgery ahead of me which was planned to address the pain in my left buttock and left leg. Since some of those nerves curved around to the front I was hopeful that would help solve the problem of my continuing vulvar pain.

Oct. 31, 2011 - Dr. Dellon - This was supposed to be my surgery date for my last pelvic nerve surgery -- to release the posterior cutaneous femoral nerve and inferior cluneal nerves. However, on Oct. 28, two nerve blocks were given near the ischial tuberosity where I felt pain. This was to make sure I was a candidate for surgery to release the posterior cutaneous femoral nerve and inferior cluneal nerves. To our surprise - and my dismay - neither block gave any relief or numbed me. I had one more block in the left vulva area where I was still feeling intense pain -- this block also failed to numb me or provide relief. At this point it was decided I was not a candidate for surgery. Dr. Dellon suggested that I was having central nervous system pain and advised that I seek help with sacral stimulation. (This in itself is a complicated proposition as there are only off-label uses of stimulators for the sacral nerves that are for pain. At present, sacral stimulators are only FDA-approved for bladder urgency and frequency, not pain.) Other possibilities I have been advised of are a pain pump and possible use of ketamine as an adjunct therapy. Dr. Hibner has used ketamine infusions post-surgery in some cases.

November, 2011 - I am in the process of scheduling a consultation with Dr. Joshua Prager at UCLA. Dr. Prager is one of the "big guns" of pain medicine who take on complicated cases like mine.
------------------------------------------------------------------------------------------
For those of you trying to decide on surgery -- and which surgeon to put your trust in -- I know how scary, frustrating and almost impossible it feels. Just when you think a certain surgeon is "the one," you learn of another person who did not do so well having surgery with them. There are not enough studies. There is not enough information. We end up relying on each other's stories and every scrap we can get in between.

I was so sure I was going to be one of the "lucky" ones. I had studied diligently; I had researched everything available. But that's not what happened for me. Maybe it has something to do with the fact that it took 16 years before I landed on that surgery table. Maybe I have a central nervous system "default" with grooves worn deep that continue to reset pain signals no matter which surgeon operates on me.

There are some happy endings. Just not enough of them. I look forward to that changing as the state of PNE surgery evolves.

[Faith]

One of my thoughts why pain is better for several weeks after surgery is all the anesthesia that is given blocks the nerve pain signal in the central nervous system (brain and spinal cord) and as the anesthesia wears off the pain slowly returns. There is so much about chronic pain that is not known. Even if the nerve is free now and isn't sending anymore pain signals how long does it take for the central nervous system to change back to normal?

Very good point nyt. I totally agree the CNS is huge especially for those of us who have had pain for years. I've thought a lot about Larry who posted his long recovery experience after TG surgery in France and how he kept going back for Ketamine infusions and finally many years later he's seen significant improvement.

Don't give up hope yet guys. Your situation is very difficult PN down under, but not hopeless. Some days I want to just stop looking for help as I get so overwhelmed by my complicated pain that no one seems to know "for sure" about, but we just have to keep searching for answers and pray there will be some relief in the days to come. I think especially for those of us who are still very young there will be many developments in the pelvic pain community in our lifetime.

I also agree with AM about possible entrapment in the main branch. And also Violet about the Potter MRI. There are still some options.

LottaNerve,

Thank you so much for finding the strength to share your story with us. It is a huge help to people like me who are trying to decide b/w surgery or other pain management options. I think the CNS involvement is so strange because I had CNS sensitization with pain outside the PN distribution (in my feet first then it kept spreading) after only a few months of PN pain. Others go many years and never have CNS sensitization symptoms so there must be something in our genetic makeup or some autoimmune cause that has yet to be discovered. I too have been offered a spinal cord stimulator (even though I have never had surgery) but for now have not decided to go that route. I know it is a very realistic option though for me in the future. I think Ketamine is something that could really offer a lot of us hope in the future as well and I hope pain doctors will look into this for those of us with CNS windup.

Did you ever have a Potter MRI? Just wondering because I have not and am considering this perhaps before surgery (wish her wait times weren't so long!).

I applaude you for not giving up and for continuing to research and be your own advocate. I pray this pain doctor will have some good recommendations for you and you will get some much needed relief in the days to come. Please keep us updated!

[Lernica]

Dear LottaNerve,

Thank you for posting. I'm so sorry to hear that your pain has not improved despite your diligence and all your efforts over the years. Posting about your experience with your surgeries will help guide many of us as we each decide which path to take in our treatment plans.

Please don't despair; I am confident that sometime in the not to distant future, great gains will be made in pain management and nerve pain syndromes, and we will all be the happy beneficiaries. One day, some day, soon.

Thinking of you, and sending you lots of virtual hugs. Please keep in touch as we are with you all the way.

[LottaNerve]

Faith and Lernica ----- Thanks so much you guys! And to think I have been scared to post about my "failed" surgeries. It's hard not to personalize it when one person gets better and you don't. I get those old messages in my head that say I am doing something wrong. Crazy, isn't it? Like we have any control over this horrible condition.

Some people are making great points about the CNS and pain. I've been reading and watching videos about ketamine also, and am curious if I will have a chance to try it. Faith, thanks for posting about Larry and how he improved after continuing ketamine infusions after TG surgery in France.

Dr. Dellon had a look of disbelief on his face when I still presented with pain in my vulva area after two surgeries. He said he took out every nerve that could possibly be causing pain in that area. And I think he did a good job on those surgeries -- I actually did notice that the "knife" pain had moved. It moved from the front left side where it used to be, near my urethra, lower down to the left side of my vagina. Now it feels like fire ants are marching down the left side of my vagina ... owwww!!! I notice the way I use ice has changed too, as far as where I place it and which size of ice I prefer.

But even though I am aware it is a different spot, it "feels" like the same nerve channel that has been there for 16 years.
Does that make sense?

This is one of the case studies about ketamine done at UCLA that I found fascinating. It would be great to have case studies with pelvic pain.
http://www.youtube.com/watch?v=7Qa6gMRW ... re=related
I think it automatically starts on Part 2, but in case it doesn't here is the link to the second half.
http://www.youtube.com/watch?v=-F95dVfx ... re=related

Frankly, I would rather have this choice than have a device implanted in me -- but I don't think I get to be the one who makes that decision. It's not exactly like there will be a menu I get to order from!! I've avoided the Interstim, which is touted for Interstitial Cystitis, for years now -- and it feels like a real step back to think of having that thing implanted in my backside. ugh. But I felt the same way about PNE surgery two years ago.. so ... more will be revealed.
------------------------------------------------------------------