Peripheral Nerve Surgeons for Decompression:

[Nerve_Compression_NP]

Luckylee Hope that helps out a bit...

I am both a Provider & a Patient. I had a total of 18 compressed nerves, I’m counting 2 for pudendals (one on each side). I have had 3 major nerve decompression surgeries and quite a story to tell but my purpose is to get you in touch with the right people....

Especially since only a handful of surgeons do these surgeries in the entire country of US!!

- Dr Dellon Lee was the pioneer in all these discoveries. He trained several colleagues.

- Dr Tim Tollestrup in Nevada is the actual Expert in pudendal neuralgia.

- Dr Demetrio Aguila in Nebraska is amazing in 5million ways and he was my surgeon. He is also plastic surgeon, ENT surgeon, served in military only Dr in all of Afghanistan at the time.. very interesting guy!! And worth every penny, believe me. He used methods no one else does, including wrapping with amniotic membrane to prevent scar tissue and reoccurrences. He has a very high success rate as far as outcome of pain relief.

And for anyone with Restless Legs Syndrome (RLS)—— guess what?! This too is also underlying nerve compression! Yes!!

- ***Dr James Anderson in Colorado discovers this and I am so thankful to get in touch with the correct surgeons...

Dr Anderson decompressed the main nerves associated with RLS! He was my first surgeon to do lower legs while I was pregnant!! He is Podiatry and unfortunately could not go above the knees but Dr Anderson is a very interesting guy himself, super helpful caring and with amazing staff!!

Yes I have quite an interesting story to tell and want to speak out loudly (after I’m done fully healing since surgery was done recently) but I’m not sure how yet... my intentions are to stop millions out there from suffering the same miserable and horrendous way I was every damn day of my life, robbed of sleep permanently, spiraling into a vicious cycle... until I found my answer! My cure! And those were surgical interventions only. But the benefit I get as a provider is a tad bit different. And I SEE millions suffering and have diagnosed nerve entrapment myself, something I strongly believe needs to be educated and spread with knowledge.

Nerve compression/ Nerve Entrapment- usually will require surgical decompression for lifetime relief (especially if it’s affecting your every day quality of life!) but you truly have to be in the right surgical hands...

If your surgeon does not know the other surgeons I mentioned above, I would refuse to do the surgery with them. That’s my personal advice to you. And it will be costly dear because Aetna for example views pudendal decompression as “investigative and experimental;” hence, will not cover. I can send the link for proof but even for my legs insurance said considered cosmetic... like seriously?? I’m not contouring a pretty nose on my leg or getting extra boobs- I’m decompressing NERVES that are the mainstream reason for ongoing horrendous pain and in my strong personal and professional opinion, is the biggest drive to this opioid crisis. People get bounced back and forth Provider to specialist and million dollar workup and still cannot identify nerve compression/entrapment. I’m surprised your doctor discovered it!! His very smart then I must say!! Because pudendals get missed SO often!! And it’s much more common than what’s written in literature because it’s just not being identified properly. I want to take a stance and speak out about this, I truly do. I’m still thinking of “how” because people (and some providers unfortunately!) are just not receptive to learning. It sucks, I wish I can reach out to millions and provide them their answer.. their CURE... to address the underlying issue... to STOP chronic pain.. not just give them another script for a narcotic, then judge them and give them the eyebrow for having a script, yet still have no answer for them, and allow the vicious cycle to continue. But I wish I had stronger heads to get with to do this!! 😞

The passion & drive is there, but the tools & help are not. 😔

If anyone has any fabulous grand ideas... please shoot them my way!

Thank you in advance.

[Godsgurl]

Boy, you describe the nightmare I'm going through. Are you a NP? I'm a 66 yr gal in San Diego living alone who has been going through my latest pudendal crisis with horrible rectal and perianal pain for 8 months. Obviously the inferior rectal branch is involved. Taking Dilaudid and can't take the nerve meds. Can only lie on my side with a pillow between my legs. Managed it for two years and it's reared its ugly head again. I'm versed on all the doctors you mention. If I could get up to Dr. Tollestrup, they would schedule an appt. Both Dr. Feigenbaum and Dr Schrot think I need Tarlov cyst surgery for sacral nerve compression for 5 cysts on my spine, one at S2 is 3 cm. I really want to avoid this risky surgery! I'm very debilitated and can't fly due to rare vertigo condition. Had my caregiver drive me to see Dr. Hibner in Botox again to get blocks and Botox in May but it hasn't helped. I had a MRN with Dr. Filler which was very detailed showing compression at ischial spine but Hibner doesn't think its PN entrapment. I think the concept of doing anything with amniotic membrane is fabulous! I want to learn more. I know Dr. Ghazi, pain dr, is doing amniotic injections into pudendal nerve in Denver. Looking into neuromodulation with Dr. Kenneth Peters in Michigan but have no idea how I'd get there. I'd love to communicate directly with you via email or phone. Very desperate and need help!!! My mental health is terrible. I feel so hopeless!

[anne77 in reply to Godsgurl]

I had an amniotic allograft & botox in TN about a year and a half ago, and it did not help me I know at least 2 others who had the procedure with the same doctor,and it did not help them either. Please keep us posted--I am hoping maybe they've come up with an improved technique!!

[Godsgurl in reply to anne77]

Anne I think I know the dr. you mention. What was the stem graft like and where was it injected? I hate we have to go through so much.

[anne77 in reply to Godsgurl]

Dr. Barry Jarnigan in Franklin, TN did the procedure. There was someone on this website proclaiming that she had the amniotic allograft with him and she had no more pain! She was actually "advertising" for him and making false claims! I have not had any surgeries, and I am currently trying physical therapy. You can google his name to get a good explanation of the procedure. I've been suffering for almost 5 years now, and it is very hard to deal with the pain levels at times

[Godsgurl]

I looked up Dr Demetrio Aguila in Nebraska. He's a plastic surgeon. Did he do pudendal surgery on you???? Did you have PN surgery with Tollestrup?

[Chica1943]

Thanks for posts. Wondering why you didn’t mention Dr Hashemi in Va?

[Pelviccrusader in reply to Chica1943]

Could you please provide a link? Could not find him/her.

[Chica1943 in reply to Pelviccrusader]

Dr Homayoun Hashemi in Woodbridge. Va

[Hidden]

Not sure if he does decompression but Dr. Conway does a lot of pudendal nerve issues I believe. Very well liked.

[Jev1972]

Good post one correction. Dr. Tollestrup is NOT an expert in PN. He is in Piriformis. I had surgery last summer with Dr. Tollestrup. He studied and practiced for a short time Dellon but PN is not his thing. Trust me. I have not heard of Aguila, what surgery did he perform on you? Outcome? Thanks in advance.

[ga138650]

Just an FYI. Dr. Aguila or Dr. Tollerup does not have one success story on there website. Dr. Dellon has MANY. Do the math...

I’m open to hear how either one of those doctors diagnose and treat PN or PNE.

I can be reached at 8607726865.