Health Organization for Pudendal Education

Hi Everybody,
My first post. I've been dealing with PN pain for about 18 months. The pain is controlled reasonably well with amitriptylene and Lyrica, but I have to limit my activity significantly. I'm gaining weight, and feel like I'm getting more and more unhealthy. I'm considering further options, and am intrigued by the advertized ability of MRN to image the nerves, and presumably their pathology. But I must also say that I'm put off by the commercial feel of Dr. Filler's whole enterprise. One wonders if he's just in it for money. I am a trained scientist, but definitely not a MD, and I've read Filler's article in Neurosurgery Focus from 2009. It sounds good, but I haven't read to much about outcomes. Can anyone tell my about their experience with Dr. Filler?
Thanks, and take care.
Jim

Last I checked, the claims Dr. Filler was making about his treatment outcomes were exaggerated.
But remember, getting the MRN does not mean you have to pursue treatment with Dr. Filler: You can just take the information in the report as a piece in the puzzle in figuring out what treatment is needed. Often you can get the recommended treatment from somebody who is contracted with insurance, which is a much less expensive way to go.
Dr. Filler generally seems to be very interested in the piriformis muscle / piriformis syndrome. 20% of the population has a bipartite (split) piriformis, and I am willing to bet that if you fall into that category, as I did, he will jump to the conclusion that the pudendal nerve is entrapped in the piriformis and will want to treat the priformis based on this perception. That's what he wanted to do with me.
The MRN report was very thorough and did note other issues. My report mentioned the presence of sacral tarlov cysts, but that is something Dr. Filler does not treat. So when his NP gave me the results on the phone she suggested ignoring them. Come to find out, the tarlov cysts were in fact the problem and nothing Dr. Filler could have done to my piriformis would have been helpful, because my largest cysts were at S2, and S2 enervates the piriformis: Hence no matter how that muscle was treated it would have stayed in spasm.
general points I would make about my experience with Dr. Filler:
-The office visit to get the MRN ordered is a good experience - Dr. Filler is polite and professional, does a thorough exam, and BELIEVES THE PATIENT AND REINFORCES THE PATIENT'S SUBJECTIVE EXPERIENCE WITH OBJECTIVE PHYSICAL FINDINGS, which can be a huge mental / emotional relief for many people whom are doctor-phobic due to skepticism and ignorance about our condition.
-Get the MRN if you want some more info about what is going on in your pelvis. Don't expect to be able to use it to prove PN. There is a lot of skepticism out there about the imaging studies being done on the pudendal nerve. When I was fighting for insurance coverage for tarlov cyst surgery, the insurance company flat out suggested that I was faking PN symptoms and cited numerous sources to demonstrate that the MRN (which showed pudendal inflammation) was unproven. So I had to go get a pudendal nerve motor latency test to prove my PN.
-The part of dr. Filler's care which gets to feeling a little "scammy" is not the initial visit or the MRN, but the treatment suggestions and cost. I would not discourage you from getting the MRN so much as I would encourage you to keep your treatment options open after you get your results.

Hi Jim,
Although I haven't had Dr. Fillers MRN (had a 1T MRN in UK) I have had a clinical evaluation from him at his London clinic, armed with my rather poor MRN scans.
I agree exactly with what HM has posted. If you need a written report to validate your pelvic problems, (although he does have a slant towards a piriformis involvement) then go for it but don't expect it to be absolute proof.
I found that he was the 1st doctor who did actually listen to what I had to say. He examined me properly and with a great deal of knowledge with regard to pelvic/spinal nerves and problems, re examining me when a question arose to check again. I do have a piriformis issue however but had been diagnosed with S1/L5 back problem (but no sciatic nerve impingement at that level?) by two local neurosurgeons, so I was that person who was desperately needing someone to LISTEN and examine the problem areas I was mentioning, he was an absolute godsend for me.
After that a PN aware British Dr did examine me and agreed completely with Dr Fillers findings although he was sceptical initially. Without Dr F's report I may still be struggling to get a proper diagnosis and appropriate treatment.
It seems as if you are already on the right track with a PN diagnosis? so I would suggest that having further confirmation of that diagnosis is perhaps unnecessary at this stage, unless you wanted to get a block from him (expensive and not always covered) The advantage of a block from Dr F is it is an open MRN, I think he is the only one to offer this.
As HM pointed out, you could go to another doctor with your Filler report/scan for any treatment .
However, I would also suggest that physio may be your next step. Take a look at the home pages to find someone who is PN aware near(ish) you. A good PN aware physio can give you a lot of information about any tight muscles that may be involved and some exercises that may help.
Especially If you have had no preceding 'trauma' incident to your PN problems, this may be all you need to calm things down.
A Hollis Potter scan (New York) has been regarded as the current pinnacle for PN imaging btw and if you believe that you have no piriformis muscle involvement with your symptoms that may be a better option. There are many people on this forum who have posted their Potter scan findings and a thread about Filler v Potter scan somewhere.
The advantage of a Filler scan is that there can be the all important clinical examination too. It is the piecing together of those findings with the aid of imaging and physio findings that can give a better picture of what is going on.
Let us know what you decide.
Take care,
Helen

Hi, Jim. I went back and found one of my old postings about Dr. Filler. Hope it helps. Emily B.

I saw Dr. Filler a few years back. He accepted absolutely no insurance. However, depending on your insurance plan, you may be able to get some reimbursement from your insurance company. Dr. Filler is extremely expensive. I wish the old posts from the other forum were available so you could read people's comments on their experiences with Dr. Filler.

I did not have a good experience. I think the initial appointment was $500. For that, his assistant came in and took all my information, followed by a brief visit with Dr. Filler himself. From that point onward, it was impossible to see Dr. Filler again. They told me he is too busy to see patients or talk to them on the phone unless they are post-surgery. No direct access to the doc!

I went ahead with the MRN. Instead of the pudendal nerve, they focused on my sciatic nerve. I have NO sciatic symptoms. The report mentioned nothing about my pudendal nerve, which was the whole reason why I spent so much money. When I really made a fuss, the assistant finally called me back and said Dr. Filler reviewed the MRN and he was able to see part of the pudendal nerve and didn't see anything wrong. I think that was a whole lotta hooie.

Nevertheless, he (through his assistant) INSISTED I needed injections into my piriformis. One injection on one side was $10,000!!! When I said there was no way we could afford that, the office person asked if I owned my house. When I said yes, she told me, "Many of our patients take out a home equity loan to pay for the injections."

It seems that Dr. Filler's "thing" for pudendal nerve patients is piriformis injections. I do believe that at one time, Dr. Filler may have been a good doctor. Now, I believe his focus is $money, not helping patients. Also, he claims to have a 90% success rate with his pudendal surgery. If that were true, his near-certain cure would be written up in medical journals and all other doctors would be copying his success.

Perhaps some other PN patients have had a better experience with Dr. Filler and his office, but from what I remember from the old forum, most people had similar experiences.

I'm not saying not to go see Dr. Filler if you think he's right for you. Just proceed with caution and ask lots of questions and don't be pressured to spend money you don't have.

Hope that helped,

Emily B.

Thanks everybody for your replies.
I'm thinking I'm going to go ahead an get the MRN to see what it shows, though I'm going to take a look at Hollis Potter before I decide for sure. So far I've gone through some standard neurological testing and a standard pelvic MRI, and it all basically came back looking normal. I would say that I've been lucky enough to have doctors who believed me, even if they couldn't find anything wrong themselves. The kind of pain PN presents... I can only imagine what it would be like to be told you are fine, it's in your head, etc. Still, I'd like to have some objective evidence that something's wrong. I talked to Filler's office, and they told me the MRN would cost me about $3000 max, depending on what insurance would pay for. While I can probably swing that, it got me thinking - what's it going to cost for the open mri injections (thanks for giving me an idea Emily), not to mention surgery?

By the way, has anyone found that evidence such as the MRN or Potter's MRI technique helps to get insurance to cover this stuff? I would seem to help demonstrate that PN/PNE is a real condition.

Take care everyone,
Jim

Helen,
Just to check, the UK physio is a US physical therapist, correct? Has this helped you some? As I understand it, they can help to relax the pelvic floor, which can help relieve some symptoms. Is that about right?
Jim

Hi Jim,

Yes, a UK physio is equivalent to a physical therapist in the US. If your problem is due to tense pelvic floor muscles myofascial release PT might prove helpful. There are some excellent ones in the Southern CA area. I think it's important to at least have a PT eval to see if there are musculoskeletal factors such as pelvic misalignments that are contributing to your pain. If it turns out you have a nerve entrapment PT may prove fruitless in the end but is one of those things you want to at least consider.

I think with the MRN or the MRI you may obtain some valuable information but it's also possible that some pathologies can be missed. And there is always the question as to whether what shows up on the MRI/MRN is really the cause of your pain. If the procedure can be CPT coded properly, hopefully it will be covered by your insurance.

There are some people who have gotten coverage for other procedures based on results of MRI or MRN imaging but it will depend on your insurance company. I think Kaiser was one that did and I believe Ezer posted about it somewhere. You could send him a PM to see if he can confirm this.

Best,

Violet M

Hi Jim,
As Violet said, yes that's right but unfortunately although I have had quite a few physio sessions non of them did any good. There was no one with any pelvic expertise and PN was never mentioned although one (the 4th, I think) did diagnose my piriformis involvement, so gave me something to follow up on.
I do think it is that something that has to be tried, many people have has good results; as mentioned earlier, especially when there has been no preceding trauma event. Mine was from a fall, haematoma and subsequent scar tissue. You will never know until tried and it could save you an absolute fortune
Take care,
Helen

I'm skeptical when Dr. Filler suggests that his open MRI guided piriformis injections are worth the extra $$$ over regular fluoroscopy-guided piriformis injections. Many Doctors in pain clinics (particularly Interventional Anesthesiologists) are fully qualified to inject the piriformis. I had mine injected once, 100% covered by insurance, before the Tarlov cyst surgeon told me it would be a waste of time in my case. The injections were not effective, so I'm glad I didn't pay Dr. Filler a few grand to do it!

Yes after exploring this site, I'm pushing to get the Hollis Potter MRI. She's actually in-network for me, so even forgetting the other factors with Filler, it makes sense to go with her first. And she seems to be getting much more useful information for her patients on this site. I'm seeing my neurologist tomorrow, so hopefully I'll get it set up.

As far a PT, it looks like my best options are a handful of PTs in Chicago who work on this problem. Can anyone out there recommend a particular PT in Chicago?

Thanks,
Jim