Post PNE Dr. Dellon surgical update

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Re: Post PNE Dr. Dellon surgical update

Postby Frankiet » Wed Nov 02, 2016 11:54 pm

I hope everyone who is suffering from the pain I had gets relief!

Today, Nov 1st was 70 degrees and I took the boat out to Lums Pond state park. Didn't even think twice about driving and then sitting in the boat for hours. Wow, what beautiful fall colors, the trees were blooming! No fish today, but also, no pain!

Someone asked me about Dr. Dellon's age. I don't think he's that old, in fact I think I'm older than him. I can fix appliances and renovate houses, but I'm not that good at surgery, although I can filet fish pretty good.

I would recommend Dr. Dellon. You have to consider the alternative. Are the results guaranteed? No! If your life is being restricted by your pain, sometimes you have to make financial sacrifices.

Good Luck eveyone and God bless us all!
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Re: Post PNE Dr. Dellon surgical update

Postby Frankiet » Wed Aug 09, 2017 3:16 pm

Greetings friends,

I'm Posting this update for a woman in Australia who contacted me on Facebook regarding Dellon surgery. I am pleased to say that the surgery Performed by Dr. Dellon was successful. In fact, I have stopped all medications and have no pain. Sitting for hours, no problem, I can work, travel, and take the boat out.

I realize that not everyone has been as successful as I have. Dr. Dellon is just a little weird, but, I can say that it was worth every penny out of pocket and I would make the same decision again. Good luck and God bless!
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Re: Post PNE Dr. Dellon surgical update

Postby Frankiet » Sat Dec 02, 2017 2:59 pm

Hello everyone! I just got a message from a woman in Australia who wanted some info on my case, so I am updating my condition. So far 2 years post surgery and I am 95 % pain free. I have to avoid impacting that area but normal sitting is fine for hours at a time, when I couldn't even sit before. no meds, I take a shot of Lupron every 6 mos for hormone therapy. yes testosterone fuels prostate cancer, so they keep the level low, low energy sometimes, but no pain. Best wishes to everyone!
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Re: Post PNE Dr. Dellon surgical update

Postby Violet M » Sun Dec 03, 2017 5:42 am

That's great news! Glad to hear you are still doing well. :)

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.
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Re: Post PNE Dr. Dellon surgical update

Postby April » Mon Dec 04, 2017 3:25 am

That's wonderful! Thanks for this and all your earlier posts, Frank.

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Dr. Dellon surgical update

Postby mrn87 » Thu Dec 07, 2017 7:24 pm

Hello, My name is Martin and I live in USA. Based on my experience, the crucial stage before considering surgery is the diagnostic. I have PN for 8 years. I am Computer technician so investigation about this disease becomes a priority. Visited about 30 specialists, MRI's, EMG's, PT's, Chriropractors, Pain Speciliast, Neurosurgeons, Acupunture etc..However few of them focuses on diagnostic. Due to the fact that they need to touch your butt and genitals it is very difficult and they are not eager to do it. They focus on expensive test such as MRi, MRN and the horrible EMG. For somebody who is new to this problem, following this pattern will help you

1. Have only ONE MRI to rule out a tumor or inguinal hernia, but not more. Do not waste your money.
2. Do not perform EMG. This test is not reliable since this type of test has many variables.
3. MRN (N is for Neurography) is very expensive and it is common to fail in detecting entrapments.
4. Visit a PT expert on pelvic floor. Problem with pudendal could very deep with Sacrotuberous ligament, alcocks canal, obturator or piriformis muscle. Also can be external (such my case) on the perineal branches.
5. After PT analysis and get nerve block to confirm trigger point. Do not star with this step. You will loose money and time (scheduling, hospital, driver, etc)
6. Remember that pudendal nerve crosstalk with the Posterior Fermoral Nerve (PFCN), so it could be also the source of pain. Please consider PFCN as a potential candidate instead of pudendal. Symptoms are similar.
7. If results are positive, consider Pulsed Radio Frequency, ultrasound guided injections, Botox injection, Lidocaine and Voltaren cream (for External cases). Lyrica and Tramadol have a lot of side effects in the future (Low Levels of concentration, bad inmmune system , loss of memory, etc)
9. Do not do neuromodulation, horrible reviews (check you tube as example) and it create more problems (Brain, back pain, memory, battery problems, depression, and quality of life) Very few cases are effective only with something called interstim.
8. If any of the previous steps are not enough, consider surgery. Many doctors do not know about peripheral nerves. Many nerves are only sensorial, even in the pudendal not all are motor/sensorial. Very few doctor are eager to resect nerves.
9. I did surgery with Dr. Dellon. Due to I failed having a good previous diagnostic, He resected some branches of the PFCN and was not effective. 6 months before a local Pain specialist (with no experience on pudendal) tried to block my PCFN and without knowing also block pudendal at the perineal branch. So we thought my problem was the PFCN.
10. Now I am in the process to confirm that my problem is the perineal branch of the pudendal (80% of those branches are only sensorial) before considering surgery again.
11. I will do PRF (pulsed radio-frequency) which has good results. Remember it is nor Continuous Radio Frequency which is different.
12. Conclusion: Do not do surgery until if you are 100% sure about how effective was your Diagnostic.
Last edited by mrn87 on Fri Dec 08, 2017 10:07 pm, edited 2 times in total.
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Re: Post PNE Dr. Dellon surgical update

Postby April » Fri Dec 08, 2017 6:39 am

Hi mrn87,

Thanks for your suggestions. So you (and Dr. Dellon) concluded that your pain was coming from your posterior femoral nerve, because you did a nerve block that eliminated the pain. But, you realize in retrospect that the block also numbed the pudendal nerve. Oh, that's too bad. Did you have pain in your thigh (making you think it could be that nerve)? Did you try neuromodulation? Or are you just recommending against based on what you've read? And tried pulsed radio frequency, and it worked?

Many thanks,
April
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Re: Post PNE Dr. Dellon surgical update

Postby mrn87 » Fri Dec 08, 2017 10:00 pm

Hi April,

Yes. We initially thought , due to symptoms that the responsible nerve for my problem was the PCFN. Yes I had pain in my upper thighs making think almos tall Physicians that It was even a enthesopathy problem. But After all these years and after the surgery I am learning more from this Pudendal nerve. These are my facts:

1.Pudendal nerve cross-talk with the PFCN . If this nerve in the perineal area is affected, it start to bother the PCFN. Since PCFN covers more area, it makes you think that it is the responsable for your pain. That is why it is very important having a knowledgeable pain specialist doing the nerve blocks on Pudendal. Few know how to block it.
2. Now. I know that not all branches of the pudendal are motor/sensorial. Some of them are only sensorial. Thus, I have the hope to resect them. Area of touch when I am seated is not more than and inch but it can produce to much pain because your are putting your entire body weight on it when seated. Thank God I am slim. I could not imagine someone who is overweight with this problem.
3. Many pain specialists offer neuromodulation and after reading reviews from users who chuse this way I am veru scared. It is masking the pain and can produce more pain in your back. Living with remote on your hands, Taking care when getting a shower etc.. Not good reviews on You tube. Just type neuromodulation reviews. also required for you to have an appointment with a psychiatrist, why? preparing you to avoid depression!!! I avoid following this way. It is very invasive.
4. The only think it work is lidocaine and voltaren cream three times per day. It helps lowering pain on daily basis.
5. I will do PRFA in March. I have been reading good reviews and Research about it with positive effects. If is not effective I will consider Resection. Why? because the superficial branches of the pudendal can be resected. The one you cannot touch is the deep branch connected to the muscles. Check this graphic https://en.wikipedia.org/wiki/Perineal_ ... _nerve.svg

Do you know what sector of the pudendal is involve in your problem? In my case I had nerve blocks in the Alcock's canal and in the sacrotuberous area with no positive effects. Thus my problem is only in the perienal area, very close to the skin between scrotum and anus. I will divide pudendal nerve by internal and external sectors. What is your case?
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Re: Post PNE Dr. Dellon surgical update

Postby April » Sun Dec 10, 2017 4:49 am

My problem is only in the perineal branch as well. I developed the problem working out intensively on a step machine b/t Jan. and June of 2015 (took me a few months to figure out what was causing it). I tried blocks twice and neither gave me extended relief. Right now I'm on four medications (and I use ice when the meds aren't enough), and I'm just trying to figure out what to try next before resorting to surgery. Unlike most pn patients, I can sit. I *much* prefer to lie down, and, in fact, I have a set up in my home office that allows me to lounge as I work (I'm in it now), but sitting up isn't any worse than standing for me.

Thanks for your suggestions. I haven't used you tube as a source of info for these options, but perhaps I should check it out. Let us know how the pulsed radio frequency goes. Where are you having it done?

April
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Re: Post PNE Dr. Dellon surgical update

Postby mrn87 » Mon Dec 11, 2017 9:32 pm

PRFA has to be done by somehow who is knowledgeable about Pudendal. It will be done at Dr. Attaman in Seattle in March.-2018. The good news for you and for me is that the all the Perineal branches of the pudendal (except for the deep branch) are sensorial. Thus,we have the option to be resected or Freezed with Cryoablation with no side effects. I had the Perineal branches Resected with no side problems. If a nerve is only sensorial it can be resected or destroyed with ablation. Problem is that few Doctors know how to do it. Almost all are interested to have you for always with expensive treatments and noneffective options such as neuromodulation that the only thing that is doing is masking the pain, not resolving the problem.
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