Health Organization for Pudendal Education

Good Evening Everyone,

I am located in Maryland and have been devestated by this nightmare for 2 1/2 years now following a VERY ill advised and misdiagnosed surgery. I am hoping some one may have seen Dr Filler and have an opinion about him. I am considering having a MR Neurography done to possibly visualize the situation and diagnose any entrapment issues or see the trauma (and hopefully treat) the "surgeon" caused.
I have had 3 pudendal blocks(wonderful Doc at U of Md) successful but no lasting effect. TONS of PT with a lot of help but no real ability to function (still doing it continues to be helpful). Many Trigger point injections, quite helpful, 2 rounds of 2bottles each time of botox,quite helpful with calming down cross talk and spacity but with scarey side effects, accupuncture on a regular basis, prolo therapy now ongoing a regular basis which is making me partially human again. However with all my wonderful providers I am still disabled (applied for and recieved SSD) and am desperately trying to regain a real life.
I should probably talk about drugs... I have tried MANY unsuccessfully(even compounded into minature doses) but do take homeopathics which help, clonodine tiny dose every other day, estrodial, xanax,benadryl,and percocet sometimes at night (it doesn't really help but sometimes it takes the edge off) Oh and I am a woman, 2 pregnancies and 3 kids. Two reconstructive surgeries(twins were not easy on this body) both successful and LONG healed with no problems before this last event in 2008.
I welcome any ideas...and am happy to try to help others.

Love and Light to all
Roxy1

If you search the term "Filler" on this Board you will be able to see all the discussion of him. I went to see him and had a decidedly mixed opinion. At this point honestly I would tell anyone interested, maybe the MRN but take the results elsewhere for treatment.
Shameless sales pitch: If you are close enough to LA to see Dr. Filler, who will run you up a HUGE bill as he is out of network for all insurance, you might save yourself a few grand by stopping by Las Vegas 1st and seeing Jerry Hesch. He is a PT Manual Therapist who exclusively does brief treatment (3-4 visits) for pelvic / sacroiliac joint dysfunction, which it sounds like what you have. If you are receiving prolotherapy I am assuming you are already aware from PT evaluation that you have joint dysfunction. If joint dysfunction is indeed your problem, it will not show on any imaging test as it is a movement problem and imaging takes still photos. I call this a shameless sales pitch because I work with Jerry Hesch, but only because I was too disabled to work until he fixed my pelvic joint dyfunction. His website is www.heschmanualtherapy.com
If you don't trust this recommendation and want to see a Doctor, in the same general geographic area there is Dr. Hibner in AZ and a group in Houston - both can be found on the Doctor page on this site. You can see I am trying to steer you away from Dr. Filler a bit? In case you are a California girl, I'll also mention that I would skip Dr. Weiss in San Francisco too. If I am guessing wrong about your geography and you were planning to travel a long distance to see Dr. Filler, there is another imaging scan in NY, 3T MRI by Dr. Hollis Potter, which has been getting some good reviews around here.

Hi,

Actually my problem is very complicated(as I am sure many peoples are) but the prolo is to repair ligament damage the idea being that the ligaments are no longer adhering to the bones as the should so it is an internal blister to create more inflamation thus making the ligaments lay down collagen and adhere properly to the bones. As I said it is helping. But I have severe nerve damage/possible entrapment and am hoping to get a MR Neugrophay to actually see the nerves and then possibly treat them if it can be done.

I think your experience w/ Dr Filler says a lot. I am told that John Hopkins can also do this test but am trying to figure out if this Filler really has something special to offer. They claim to have a patent on their process and I was wondering if it really is all that! As you said they are far away, although they are opening image centers everywhere. Did you have this image work done?

Thanks for your reply,
Roxy1

Hi Roxy1 and welcome!
My goodness, you've had a rough go of it! I should've checked the list of doctors before replying, but isn't Dr. Marvel in your area? Another consideration about imaging maybe the 3T MRI in New York. This particular scan does pick up nerves and ligaments. Additionally, they accept insurance!
Wishing the very best for you!
Warm regards,
Karyn

Yes that is true they are opening centers everyplace - Dr. Filler reads all the MRN's too, but if you want him to examine you, order the test, and work on you, then you have to go to his office in Santa Monica, CA, & then drive over to Pasadena for the MRN. The other sites are just MRN sites; your own Doc orders the MRN and you go get it, and your only contact with Dr. Filler is that you would receive a report back written by him. The reports give impressions, that is they read the film, they do not give treatment recommendations. Because I was examined by Dr. Filler & his NP, they also did a phone consult with me after the MRN report, to recommend a course of treatment. I am not sure if they would do that or not, if you got the MRN at another site and were not his patient. They billed me 50 bucks for the 20 minute discussion with the NP, and could probably not do this if they did not have a chart on you.
So anyhow, I was just assuming when you mentioned Dr. Filler, you intended to see him personally in Santa Monica. You certainly could get the MRN elsewhere. One thing I can say for it - it gave me PROOF: the report reads that my pudendal nerves are inflammed & my insurance has quit playing games with me about approving procedures, ever since then.

Hi Roxy;
First of all, welcome to the site and I hope you can find some answers.
Now, if you really want Dr. Filler, I think I saw that he opened an office in NYC in Sept. Hermajesty has actually seen him and knows his costs so she may be a big help to you. Dr. Potter is the Dr. that my Dr. Conway suggested if I wanted to go for an 3T MRI. He doesn't necessarily recomend the tests because he says there aren't enough open studies on the test. Just another opinion.
There is also another PN Dr. in Minn. He is Dr. Antolak. I've read many good things about him also. Dr. Hibner seems to be the tops. Maybe if you see a specialist in PN first, that may help you make up your mind before spending tons of money going every where. Most PNrs are in the poor house running around looking for answers. I know we're on our way there. Just another idea. In the meantime, Ice will be your best friend.
My best to you Roxy;
Doreen

Hi Roxy,

Welcome! I know it is not good that you had to find us, but hope we can be as helpful for you as I have found all these wonderful folks to be helpful for me. I know one individual who sees Dr. Marvel in Baltimore and I had the 3T MRI by Dr. Hollis Potter in New York. I cannot speak to Dr. Filler - but there are plenty of posts on him

May I ask what surgery you are referring to that triggered your symptoms? For me it was an abdominal hysterectomy that I later found out I really did not need

I hope you find good support and good information here. Keep the faith!

Blessings,
Grace

HELLO EVERYONE; I AM NEW TO THE SITE. I WAS DIAGNOSED WITH PUDENAL NEURALGIA WITH ENTRAPMENT OF THE RIGHT SIDE JUST RECENTLY. I HAVE HAD A HYSTECECTOMY AND UNFORTUNATELY ALSO SEVERAL LAPAROSCOPIES TO REMOVE ADHESIONS DUE TO THE SURGERY. I'VE HAD PELVIC PROBLEMS FOR YEAR'S AND LAST OCTOBER THE PAIN BECAME UNBEARABLE. I CAN'T TELL YOU HOW MANY DR'S AND TEST'S I HAD AND SAW AND OF CORSE EVERYTHING CAME BACK NEGATIVE(I'M SURE SOMETHING YOU ALL KNOW) FINALLY ONE DR. MENTIONED THIS DIAGNOSIS. FUNNY HE WAS A G.I. DR. WELL I WENT TO WORK ON THE INTERNET AND DOWNLOADED ALL THE INFO I COULD AND FOUND IN MY RESEARCH DR. MARK CONWAY(WHO WAS CLOSEST STATEWISE TO ME) I THEN WENT TO MY OWN DR., SHOWED HIM EVERYTHING AND BINGO!, HE BELIEVED ME(THOUGH HE HAD NEVER HEARD OF THE CONDITION) I STARTED WITH DR. CONWAY FINALLY AND I'VE HAD MY FIRST NERVE BLOCK BY HIS ASSOCIATE DR. CASSATA(THEY WORK IN CONJUNCTION) NOW I HAVE STARTED P.T. I AM TO TAKE IT EASY FOR THE NEXT FEW MONTH'S, BUT I HOPE THING'S WILL IMPROVE. I FOUND A GREAT CUSHION FOR SITTING(MADE BY ALLMAN COMPANY- WEBSITE ONLINE) IT LOOKS JUST LIKE THE TUSH CUSH, COST ABOUT 50$, BUT WORTH THE PRICE AND I CANNOT SIT WITHOUT IT.I STILL HAVE PAIN, BUT I AM HOPING FOR THE BEST. I LOOK FORWARD TO READING ALL THE POSTS AND ANY ADVISE ANYONE HAS, THAT CAN HELP. THANKS FOR READING; JANMAR53

Hi Janmar,

Welcome to Pudendalhope. Your story is very familiar to all of us here. I'm so glad you've now discovered doctors that are familiar with PN. it certainly took a lot of stress off my shoulders when I finally found a doctor who could tell me what was going on. I think my stress levels dropped by 50% . Our condition is very frustrating to both ourselves and our doctors but keeping in touch with others on these forums will give you HOPE and strength to fight this.
The website is full of information and we are actually teaching the docs. something new. The amount of interest by the medical profession is growing rapidly and the more we talk about this the more research will be done.

keep in touch. We fully understand what you're going through. We're here to help.

Catherine

Hi Everyone,

Thanks for all the friendly advice...This disease is so difficult! Does anyone know the difference between a MR Neurography and a 3T MRI and which might be better and why?

Roxy