Has anyone been successful using Magnetic Resonance Neurography? Does insurance cover? I have had so many Dr visits and when I ask about neurograpy they say they never heard of it. Also can anyone advise which MRN center in U S to use?
Has anyone been to Dr Prologo in Atlanta and had nerve frozen?
I read a long article about Dr.prologo and I have had pudental neuralgia for five years. I have no way to get there, I would pay a million dollars for his treatment !!! Sounds like a cure !! Why are not other doctors learning his technique???? I do not understand the health care system in u.s for not doing rapid follow up !! All you doctors out there, please help us !!!! Learn about it and he.LP us !!!!!!!!!
Trishj46
Trish 46, we have all read the article and are considering the options, it does sound a miracle cure for PN sufferers. Keep reading the blogs. We need to talk to Dr.Prologo, talk to a patient that has had it done, consider any side effects like incontinence and get a UK specialist interested,
i am moving to florida so i will be near enough to Atlanta to go get treatment from him.. am ganna try to get there... will be a test
Have you gotten your nerve frozen yet?
When I asked for a MRN they said it was the old name for MRI!!
Total ignorance, and that was the radiologist!
It's frustrating when they give you the "deer in the headlights" look. I've had that countless times too. It's like hey, this is the sacrum, and nerves come out of the sacrum that go to the pelvis. I swear, I feel like I know more about the nerves down there than a lot of doctors! 😕
yup no one else even here has ever know that a Lumbar nerve root physically controls forms of PNE... i was told i was crazy on here for wanting treatment of my specific nerve root... and was wrong for wanting treatment of it,,, by someone that doesnt know everything....
Thank you so much for this information.
I suggest having it. Mine ruled out unnecessary surgeries. Insurance covered all but 100. Us dollars years ago. Went to Norristown PA. fast easy, painless. Dr. Fuller reads the scan and showed what was going on. PT I had to find to help myself no doctor really knew what to do with the findings. Have it done.
What were the findings of your MRI? Thanks!
Venous congestion around the pn. No impingement
What does venous congestion mean? I'll have to look that one up. Thank you so much for responding to my question! I'm very anxious to have this MRI done, and maybe, just maybe get an answer! Best wishes.
It's me again! 🤗 Are you still having pudendal pain? Where are you at in your journey with this? Many thanks!
Yes my journey continues. It has been a very long ungodly painful journey of healing. But through a variety of pts the area went from being huge to what is now very small but seemingly endless ... I hold true to knowing the area keeps getting smaller and smaller no matter how hard/long/expensive the journey. Meanwhile, I try to keep the pain from spreading and setting me back.
MEI showed only dangling inverted coccyx and no other abnormalities. I don't even have arthritis in back. I think when I sit it is referred pain which makes back hurt. I will discuss with Pain Nanagement Dr on next visit. I plan to request MRN pamphlet and info from Dellin Inst. I worry any further action will worsen condition. Rocky68
Johns Hopkins has a 3T MRI that's all you need. The MRN link below links you to machines endorsed by Dr. Filler, he will read the results. Get on the pudendal neuralgia hope closed Facebook group. A lot of people on there are worse after pn surgery. This method you are talking about, if the Dr has done lots with good results might be an option. My pn went away after time, but I have genitofemoral neuralgia
all my p surgeries hurt me more.... they have been useless.. And i spent $20000 dollars for Filler's surgery.. and $3000 dollars for his MRN MRI... his lidocaine injection did hit the exact entrapment place in the pelvis though,,, the pile of gold surgery failed though... phew...
I have read stories about PN surgeries. They scare me to death! Even those surgeries provided by the so called "experts". I am so sorry you are in the same spot with this. When I saw my Urologist about a month ago, I kid you not, he mentioned that a lot of women are going to Colorado to get vaginal cannibis spray. From what he told me, women swear by it. I joked with him and said, so I'm going to get my crotch high? Honestly, if I knew it would take care of it, I would do it in a heartbeat! For now, more traditional medicine treatments first.
wow... cannabis is a miracle quote mark"Drug" quote mark lol... it is ok to kill urself and others with alcohol but to physically treat bad pudendal mind killing side effects... no that is not allowed cept in good states.. or countries...
I live in Colorado they are making suppositories now with cannabis. There are different strains, you don't get high just because it's Marijuana. The CBD and THC patches help me.
Ive been reading about this for months. So wish we could get it in my state.
How does it compare to vaginal valium or other things youve tried? Any side effects?
I'm a Pudendal neuralgia sufferer for almost a year an a half. I am with you on the frustration of this horrendous journey to find the right help. I live in Kansas. I have seen countless doctors about this. Currently, I have been in contact with Dr. Dellon in Baltimore. He is a peripheral nerve surgeon that has extensive knowledge on the pudendal nerves and pelvic pain. I told him my entire story about when this all came about for me. I've had the "traditional" MRI of my pelvis. My primary Dr. admitted that the pudendal nerve and nerves of the sacral plexus "got lost" in imaging because they were so tiny. When I asked Dr. Dellon about this, he said not all MRI's are created equal. He recommended that I have an 3-Tesla MRI with Nurography protocol of the pudendal nerve. I did some research and only found one place that does this specific MRI where I live. There is only one neuro surgeon in this area that even deals with this nerve. I am on the waiting list to see him. Have to wait until July 7th, although they did put me on a cancellation list. I would say, hound your doctor to find out where this particular MRI is located. I was lucky that my Dr. found out for me. It's their job to help you. Don't give up! I strongly urge you to visit Dr. Dellon's website. Dellon.com and download chapter 12 of his book and read it. I'm fed up with my condition. My back is against the wall, so I wanted a professional's opinion. Someone who had extensive knowledge of he nerve. I hope you find help. You are not alone.
Thank you for this information. Please let me know how your appointment goes. I have had this for six years. I even had coccyx removed as it was
Dangling and inverted this did not help. I am okay standing but have horrible problems sitting and lying down. So far no medications have helped that much. Rocky68
have you tried anti anxiety medication/..??? strong stuff.. was the only thing that helped my muscles let go some...??
I have wondered about anxiety being a culprit of this. I'm kind of high strung as it is. This has made my anxiety 10 times worse. I've never taken an anxiety medication before. All of the pain is on the left side, vulva, perineum, and rectum. The only thing I am taking for muscle spasm is 15mg of Amrix, an extended release muscle relaxer. I'm also using a suppository nightly, that has flubiprofen, diazepam, baclofen and Gabapentin. It's hard to say if it's working. I have no pain when I'm asleep. Once I'm up and moving around and sit for any length of time, I'm in trouble.
got to respond here... Muscle relaxers cant touch my muscle till they hit every other muscle in body before... would have to be a limp noodle before it was enough to stop the pelvis... Anxiety/ being upset... being really worried... makes my entrapment go from low to i would rather die... no joke... stopping the process from amping up is my forever fight... clonazepam is all that actually fought the muscle from clinching.. being high strung is probably the worst thing for people with the kind of entrapment that is actually just muscle caused and not a problem where the nerve is trapped in so many other ways... i would chose to be in a medicated come if i could cause then the nerve would never be choked like when i am awake... now if i only get 2 hour fever passed out sessions like i do now when un medicated the nerve never gets a rest... gatta be deep sleep... am looking into nerve destruction treatment to try to get the L4 root that controls the wrong grown right side muscles.. to try to kill it from sending signals is what i have begged for for 8 years now.. ignorant doctors have cursed me from being cured like i would if i could get what i discovered all on my own.. i dont know many pudendal patients who not only had to diagnose themselves but also discovered their cure to their PNE ALL ONT THEIR OWN DESPITE ALL the horrid Neurologists - Neurosurgeons - Pain doctors- and Pudendal Doctors... and forcefully denied their cure.... has been a evil practical hell joke i have lived for a decade... a unnecessary enforced entrapment decade...
anxiety can trigger the entrapment yes.. without a doubt.. if u have this certain kind of entrapment... a person here has denied that entrapment exists for most sufferers... but mine is nothing but entrapment... it doesnt have to be trapped... but it is... so entrapment perfectly defines mine... when let go by blocking the nerve that provides control to the pelvic muscle i am cured.... 100 times cured for 6 hours... 1 time for a month.. and one that filler did into the pelvis that hit the bulls eye of the entrapment in the pelvis...
Xanax might help, it helped me
Did it help in the sense that you don't tighten your muscles subconsciously? I find that I do that. More so ever since this came about. It's a guarding mechanism now.
back against the wall no joke... is like the wall of death i saw in Auschwitz... while in Europe looking for help for pudendal treatment lol,... we are a group... got the same hell... only we know each other's impossible positions... and more more than others... the ones stuck in the worst places know alot about the frustration we are forced to live with,,,,
the center of the country is a bad place to be in for this condition
I was treated for pn for 9 months, nothing was successful. Just flew to see Dr dellon, he diagnosed me with ilioinguinal iliohypogastric and genitofemoral nerve issues. I had them resected by another Dr and I finally have relief. I had lower left abdominal pain that radiated into groin. True about the 3T. Hopkins has one.
Wow! I'm glad you finally have relief! I have been in communication with him, via email. I explained my entire story to him, including when I got hurt, what's been done as far as treatments go, and so on. He seems to think I could have injured the perenial branch to the pudendal nerve, or the perenial branch to the posterior femoral cutaneous nerve. I am still waiting to hear if I'm getting a 3-T MRI. I was sad to learn that Dellon doesn't accept insurance. I wouldn't even know a ballpark amount for this type of surgery. How did you do it? Any suggestions? Thank you so much!
If it's the pfcn dr Williams or dr shar hashemi take insurance and can do the surgery. Pudendal, only a handful of Dr. There is a dr Aszmann in Vienna who is world renowned and does the pudendal be will also look at your mrn films. Good luck
Where does Dr. William's and Dr. Hashemi practice? Thanks!
Baltimore and washington dc
Thank you!! Did you get your 3-T MRI with Dr. Dellon? If not, did you have images sent to Dellon to have them read? Thanks!
No I didn't but Hopkins has a machine.
I have been referred for an MRN, in Dallas, by a Dr at Loyola's Pelvic pain clinic. Dallas because she has a colleague there and I friends to stay with. I am as yet undecided. It will cost my full high deductible plus travel and time. My research into MRN doesn't convince me that I will likely get a definitive answer or solution.
I've heard that about the 3-T MRI as well. I don't want to be cut open either unless it is absolutely certain what the problem is. So frustrating!!
it is always a gamble... even when they say yea i see this or that... doesnt mean it is true.. or has anything to actually do with your pudendal problem... doctor like to say stuff... they got to if they want that money... if u see one and get tests and he says" Well i actually couldnt see anything but that is only cause i CANT see anything" ha.. No.. they say No there is no problem... No u just cant see the problem... And say that not that there is no problem... Or they say well i see this or that... might mean nothing in ur case though.... Is very frustrating...
well the only MRI i had that ment anything was a experimental 3D MRI that was patented and very expensive by a dr filler in california... now he is one of those primadonna wants to get super rich doctors... he took 25000 dollars from me... 3000 for the mri... it saw things no other mri on the planet at the time could see... that was 2009... everything changes... might be some other 3D designed shit... takes a computer expert there... Filler patented his shit so no one else could use it... that was then...
I had an MRN scan and it was no help at all. Filler diagnosed me with pne from it but his surgery had no effect. When I took my MRN scan to Dr Greenslade in Bristol he was dismissive of the findings and ordered another 3T scan at Bristol. The 3T scan was not performed to diagnose for PNE but to check for other abnormalities.
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