Aaron Filler in Santa Monica

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Aaron Filler in Santa Monica

Post by webslave »

https://www.ucpps.men/images/filler.jpgThe current darling of the PNE set, Dr Filler has some very controversial reviews at ratemds.com, such as those quoted below.

Filler is one of the very few people who routinely performs the controversial pudendal nerve entrapment surgery.

My opinion? Stay away.


I was operated on by Dr. Filler for a nerve entrapment in my lumbar spine. The result of the surgery was that I was in worse pain than prior to the surgery, which is always a risk with spine surgery and I understand that. However, Dr. Filler provided no help in attempting to figure out what can be done to alleviate the new symptoms and after two phone consultations he was no longer willing to assist in a new diagnosis. Furthermore, I paid the out of pocket expense for the procedure in full prior to the operation ($7000) , However I later received another bill for $5000, which was passed on to a collection agency and now I am attempting to not only repair my spine, but also my now tarnished credit record as well...

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Stay Away!! Will take your money but won't cure you of your pain! Recommends the same 3 procedures to everyone we have talked to. Injections, MRI, and Surgery. Will say they have a payment agreement but will get very aggressive in collecting if you take too long to pay all back. I've even heard that they have an attorneys office on payroll to help them collect. Office & Billing staff is extremely rude and unprofessional. Be forewarned and don't use this doctor. Save yourself the headache and the money in your account. Good luck!

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I had piriformis resection surgery in 2008. I am in slightly more pain now than before surgery. The surgery was not a success and I was very disappointed. According to his research, 85 percent of his surgery patients have a good to excellent outcome. Maybe I am in that category if the research is valid. He is a very knowledgeable doctor but he does come across as as slightly arrogant and not empathetic enough for me. His receptionists and billing staff are sometimes shitty but overall okay. Certainly not a first class team that he should surround himself with. He is very late to his appointments (waited 2 hours) but when I did get to see him, he spent a lot of time and was very attentive. It is very difficult for insurance to reimburse more than 70 percent of "customary and usual." You have to do multiple appeals and ahead of time. I was not informed of this ahead of time and lost out of a lot of money. He seems like an excellent surgeon and I hope my experience isn't the norm.

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Be forewarned, Dr. Filler is outrageously expensive. I saw him for an exam, two MRNs, and MRI injections In my neck and hip. Total time: less than three hours. Total cost: $53,000. I believe he is a very skilled neurosurgeon, but I see no need for him to charge such outrageous fees. And his office staff made serious errors in billing, did not return multiple phone messages - but they are very quick to send out their erroneous bills, repeatedly, and threaten collections actions. I am not the first patient that has been hung up on by his unprofessional billing staff. I wonder if the are paid on commission?

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Saw this guy as I was desperate. This guy tells me I need an Injection followed by an MR Neurography scan. I ask the staff about insurance and they pretty much tried to rip me off by telling me it is covered by insurance and sending me around in circles. Once I found out insurance doesn't cover anything I dropped this quack.

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I wish I had seen the comments on this website before I went. The initial 15-minute consultation was a whopping $700. He could not give me more information from all the NCV, EMG, MRI and CT scans I had done. He sent me for an MR neurography which was deemed clinical unproven by my insurance carrier and only can be done at his facility. Did I mention the cost was $3,000+ for a single MRI scan? His staff was very rude. I had to wait more than an hour while there was no other patients. I don't think the exorbitant cost is justified by the efficacy of the treatment and diagnosis. Please do explore any other possible options before you decide to spend money on something that may not help (unless you have no expectations). I was desperate as no one could tell me the extent and cause of my nerve damage. I wish I had done my home work.

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I went to see Dr. Filler last year with a problem that other doctors I had been seeing could not diagnose. I had a nerve problem in my Piriformis muscle and it was causing me a great deal of pain. Dr Filler sent me for an MRI at a location that he owns and then I had a consult with him at the rate of $500.00. He really had no information for me other than that I needed to have a guided injection procedure. I had the procedure and I really didn't notice any change one way or the other. I think he charges desperate patients a lot of money to do very little. It may be worth it to some, but in my case wasn't worth the time or money. Also, my insurance rejected the claims because they consider his practice experimental. Do yourself a favor and exhaust all other options before seeing this doctor. I'm not saying he doesn't help people, but it's a very expensive price to pay for something that may or may not work for you.

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I flew to CA to see this guy after reading his book. I talked with other patients and he diagnosed everyone with same condition. He sent me to an imaging place he owns (cost me $130 for taxi) and gave me an injection. Was told my insurance would cover at least 60% of cost. I currently owe them over $14,150 for an MRI and an injection. My insurance won't pay because they call it experimental. His charges are exorbitant.

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Wrongly diagnosed my problem and created more problems than I already had
. More interested in trying his "new" techniques than actually fixing the patients' problem. Terrible follow up. Botched surgery has left me worse than ever.
There are also a few positive reviews, but they seem, rather transparently, to be written by someone associated with Filler.
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Re: Aaron Filler in Santa Monica

Post by robertpagen »

Don't these people feel a moral obligation to file a complaint with the California medical board, so as to protect others?

I had never heard of MR Neurography? What is it and is imaging the pelvis of any value anyway?
Age: 43 | Onset Age: 17 | Symptoms: previously: constant urgency, premature ejaculation, burning at tip of penis, pelvic ache current: semi annual flares. | Helped By: PT, yoga, stretch, keeping warm(long johns) boxer briefs, regular sleep routine | Worsened By: cystoscopy, antibiotics (fluoroquinolones) alcohol, coffee, stress, masturbation, cold
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Re: Aaron Filler in Santa Monica

Post by webslave »

I had never heard of MR Neurography? What is it and is imaging the pelvis of any value anyway?
http://en.wikipedia.org/wiki/Magnetic_r ... eurography
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Re: Aaron Filler in Santa Monica

Post by superuse »

Also see posts ref. "Dr X" :
viewtopic.php?p=41415#p41415
I had never heard of MR Neurography? What is it and is imaging the pelvis of any value anyway?
Dr. X advertises his "special" MRN technology (his special facility) which supposedly has tweaks making it more valuable. This has been the case for about 7 years. His results don't seem to be encouraging to me, despite a high claimed cure rate. It may be difficult to judge a Dr. who takes on chronic pain patients but this particular one, his fees, practices etc could make one extremely uncomfortable. Actually, of the 7-8 surgeons doing most of the 700 or so PNE type surgeries worldwide/yr, this one would make me most uncomfortable. This is a very experimental surgery with little published backup.

There is a Dr. Potter in NYC doing imaging by 3T MRI of the pelvis, pelvic floor. It may be better quality, cheaper and covered by more ins cos . Also seem to be able to image separate nerves such as dorsal nerve to penis, etc. So far there is little to show that imaging of nerves in the pelvis relating to surgical-therapeutic cures (of chronic prostatitis / chronic pelvic pain syndrome symptoms) are useful, although they seem to have interesting typed up reports afterward. I think I've got the Dr's name right. I don't know if the 3T is a more recent higher resolution MRI or not.

--jjf
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
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Re: Aaron Filler in Santa Monica

Post by Jay »

You have the name right. Dr. Hollis Potter. She is at the Hospital for Special Surgery in NY, which I'd say is a far more reputable facility for imaging work. Back when I read the other forums, I consistently heard complaints about Dr. X's prices and the conduct of his staff.

To be clear, I don't offer this information as support for PNE or the surgery. I believe the condition exists, but only rarely, and probably as a result of some sort of trauma. The surgery, I have heard too many bad after-stories about to even consider.
I am not a physician. This is not medical advice. Consult your doctor!

Age: 26 Onset Age: 17 Symptoms: Shooting, nerve-like pains throughout the penis, which abruptly hit and leave. Testicular pain, perineum pain, burning/irritative urination, extended pain after ejaculation. Occasionally, some allodynia or ache in the coccyx/sacrum/thigh/buttocks/legs. Diagnosis: Pelvic floor dysfunction, degenerated lumbar disk, and mildly herniated lumbar disk. Helped By: Physical therapy, pain management doctor, hot baths, therapy pool, stretching regimen, breathing exercises, relaxation, distraction. Worsened By: Arousal/ejaculation (worst), constipation, panicking/obsessing, other triggers depend upon current symptoms. Tests/Prior Treatments: Too many antibiotics to count, multiple urine tests (all normal), testicular ultrasound (normal), bladder and renal ultrasound (normal), lumbar and pelvic MRI with and w/o contrast (revealed disk problems), Elavil 25mg (caused retention), Flomax 0.4mg.
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Re: Aaron Filler in Santa Monica

Post by superuse »

I've seen some of these images, however none with comments. It seems some of the reports indicate "entrapment", inflammation etc at various at various points along its length and branches. The concept of performing an operation based on the imaged locations locations seems to be performed more (by other than Filler) but the success rate is seemingly unchanged vs the previous methods of diagnosis (symptoms along with diagnostic nerve blocks, etc.) The imaging on one graph I saw seemed impressive, with the nerves, (rectal , perineal , both pudendal nerves etc) showing up pretty good, only no write up.

To be cynical (critical) , it would be interesting to see a study of 40 asymptomatic MRI/MRN scans off the street, mixed in with 8 or so highly symptomatic people, distributed to 4-5 examiners. If we get indications of "inflammations" or entrapments from all 8 out of the 48 and none others we have excellent sensitivity. If we get 12-20 selected an out of the 48 and only 4-6 (or worse) consist of our symptomatic folks we would seem to have poor identification,poor sensitivity for imaging diagnosis of problems. This non-invasive study would be easy to set up, with controls and all. Money in this field isn't flowing a lot though. Jesus just getting data from those who have done 200 or 2000 of the surgical procedures over the years consisting of 1yr follow up questionnaires is difficult, even with the DR.s charging really big dough.
Last edited by superuse on Fri Feb 18, 2011 2:32 pm, edited 1 time in total.
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
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Re: Aaron Filler in Santa Monica

Post by webslave »

MR imaging, including MR Neurography (which Filler claims to have invented), is supposed to be an operator-independent technique. However, I'd want an entirely objective person doing it, not a surgeon who both profits from the imaging and the subsequent surgery, as Filler does. In his case there is a clear financial motive to find pathologies that are treatable with surgery. It's a conflict of interest. Never ask your barber if you need a haircut, right?

Not that he referred the original poster here to surgery, but there is the risk that he is referring more people for surgery, and especially for experimental surgery like PNE surgery, than otherwise would be the case if the imaging were done by someone whose only job is imaging, and who stands to gain nothing by referral to one or other form of treatment.
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Re: Aaron Filler in Santa Monica

Post by superuse »

More machinations with Dick and Jane. Or.. er Dr X. These comments are from sites that are favorable to surgery. There are only about 8 or so docs in the world doing the vast majority of the PNE-type procedures. Unlike other surgeons I have never read of anyone receiving improvement from Dr. X. If this man is the darling of the 8 as the site mod states I'd prefer not meeting the ones out of favor.

--jjf

by E » Mon Sep 2, 11:53 pm

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,

Reby Ka » Tue Sep 28,
Thank you for your responses. My dear sister, in her efforts to be supportive of me, came across his site and thought she struck a gold mine with finding "the best of the best" of PN doctors. While thanking her profusely for her good intentions, I quickly set her straight. I was however, very surprised to see the website claim of how accomodating his insurance options were. As mentioned in my original post, I hadn't heard of one single person being covered by insurance with him. I also appreciate your concern, but please rest assure that I'm not considering Dr. Filler for treatment.
Warm regards,

Ms p .. 2 pne surgeries , one by DR. F, one in France. No go. Considered a 2nd surgery with filler
Re: Does Dr. Filler accept insurance?
by p » Wed Sep 2, 7:20 am

Oh K
I'm so relieved you've come to that conclusion.

I had a surgery with Dr. Filler, and have visited his office often.
Let me tell you that it is a complete waste of money.
His success rates are not true. I know this because I read his reports on me, and he was writing that I was doing well post surgery when I was not doing well. If he can't accurately document his own patients, how can he possible have an accurate success rate?
He has given himself the title of "world leader" in nerve care, with no one having bestowed it upon himself.

He is a sour little man who spends little time diagnosing, little physical exam of pertinent body parts (like he'll tap your knee and look at your butt while you're in jeans!) He'll charge an arm and a leg for procedures, and then for me, he decided because we were uncertain of one surgery, to switch to another one in 3 seconds flat. Then, refused to go back to his old idea which was so grand seconds ago. Like there was no rationale to my surgery and I was just his guinea pig. He has done multiple surgeries on many people...like 4 surgeries on a person!

You wait like 2-3 hours past your set time for an appointment that lasts 5 minutes, all the while he's in his office happily typing away.

His injections alone can run 10-20,000
Now, I got lucky in that my HMO paid for the crappy treatment I received. But it wasted years of my life and left me with sciatica and plantar fascitis in my feet for 3 years. (it took me one year to get approval, and they sent me to him.)

I will never ever recommend him, although I'm sure from time to time he gets lucky and helps people, otherwise how could he remain in business?-
:roll:
by K» Wed Sep 2, 1:40 pm

Hi P and E,
I am so, so, very sorry about your Filler experience. Each new post I read in regards to him and his treatments just breaks my heart. Clearly, this is not a man who is trying to help people. I hope he's enjoying whatever tide he's currently riding.
It can't last. It's very sad and unfortunate there are so many desperate people out there who would fall prey to his grandiose claims. I was almost one of them, as when I first started researching this problem, who comes up first? Filler! And if you don't know any better, he comes across as the solution to all of your problems. I'm eternally grateful to the wonderful people from pudendal.info and HOPE. Without all of you, I could've made the biggest mistake of my life!
Warm regards,

Re: Does Dr. Filler accept insurance?
by H» Thu Sep 31:43 am

Hi ,
I have not done jack, been too busy with work & family. This whole process is going slooowly right now & unlike most times that it goes slooowly, it is really my fault for not having 4 arms and 2 heads and for insisting on doing dumb useless stuff like sleeping and eating. So I have not followed up appropriately yet.
Yes, Dr. Filler is out of network for EVERYONE.
Some people have out of network benefits, and some do not. You have to ask your insurence provider. For me, my in-network providers are the ones who are contracted with my insurance company, and they collect a copay from me at a rate set by the insurance. the only reimbursement they are allowed, is my preset copay plus their contracted insurance rate for the particular procedure.
Out-of-Network, I can see whomever I please, and the deal is always the same: $250 deductible followed by my insurance paying 70% of "usual and customary" charges, and me paying the other 30%. The MRN was considered "usual and "customary" (and BTW DID require a prior authorization code although it was out of network), so they paid 70%. The problem with Dr. Filler's other procedures is, he charges well above usual and customary. So say he does a procedure and charges $10,000...insurance can determine usual and customary for that procedure is $3,000, and pay me 70% of $3.000, and I would be stuck with all the rest. Hence the whole "Financing Department" at Dr. Filler's office.

by H » Wed Nov 03, 12:00 am
C,
Have you watched Dr. Filler's pudendal youtube sales pitch in its entirety? It is in my opinion very carefully crafted to suggest, without stating, that upwards of 90% of his patients are cured.

by b » Tue Nov 09, 2010 7:39 am

I thought I wanted to see Dr. Filler until I read this I am undiagnosed as yet but have had 8 months of burning, stinging sensation near my right "sitting bone" following bladder surgery. I'll be gettng a referral for an MRN soon from my gynecologist. But I have no PNE doctor to show it to! Does anyone have a doctor that they'd recommend


:roll: This is a $30000-$60000 procedure....
?
by K » Tue Mar 01, 7:09 pm

n this issue
Exclusive: FaceTime with Dr. Filler and his staff
Welcome to the March Newsletter

The entire staff of the Institute for Nerve Medicine welcomes you to our March 2011 Case Study and Newsletter.
Well, I thought this was kinda interesting! No wonder he charges so much! How else could he possibly afford iPod for his patients?!? :roll:

INM FaceTime Program for Surgical Patients

As you can see to the right, we are launching our FaceTime Program for surgical patients.

Every patient who completes a surgery with Dr. Aaron G. Filler will receive a specially configured Apple iPod Touch with FaceTime video chat software. This will allow the patient to schedule and receive video chats with Dr. Filler and his surgical staff throughout the post-operative recovery period.

INM provides the best level of care, before, during and after surgery. The FaceTime Program for surgical patients is one more example of how we place patient care above all else.

Call us today at 310-314-6410 to learn more, or click here to inquire with our Surgery Coordinator.


:roll: Again....
?
by C » Tue Mar 01, 2011 7:34 pm

K wrote:
No wonder he charges so much! How else could he possibly afford iPod for his patients?!?

Every patient who completes a surgery with Dr. Aaron G. Filler will receive a specially configured Apple iPod Touch with FaceTime video chat software.

It might only be the $229 8GB model...but still, the patient definitely pays for it, wouldn't you say? Makes me wonder if he gets a price break for defacto advertisement of a brand like that. I'm also sure that the patient has to cover their own internet service as well. Maybe not such a gift when you think about it.
C

Re: Does Dr. Filler accept insurance?
by p » Tue Mar 01, 2011 7:38 pm

hahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahahaHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHAHA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!-
by e » Wed Mar 02, 1:24 am

This iPod is so unbelievably tacky. It almost trivializes our painful nerve conditions and makes surgery like something fun to look forward to.Fall in 2000 + chemical burn in 2002 = start of PNE symptoms
Diagnosed with PNE by Dr.Weiss and Dr.Anderson in 2004. Confirmed by PNMLT Dr.Mann. 3 nerve blocks Dr.Weiss (no help). Stanford/Wise-Anderson Protocol 2004 (no help). Botox Dr.Jordan 2006 (severe negative reaction). PNE Surgery 2010 Dr.Filler.
e

?
by C » Wed Mar 02, 2011 2:01 am

e wrote:
This iPod is so unbelievably tacky. It almost trivializes our painful nerve conditions and makes surgery like something fun to look forward to.

Absolutely. What marketing genius dreamt this up.

Tried numerous medications as well as a long period of myofascial physical therapy combined with meditation/relaxation. My pelvic floor muscles are now normal on exam. Deciding on next treatment.
C

Re: Does Dr. Filler accept insurance?
by Al » Wed Mar 02, 7:08

hahahahhahahahaha. K,AM and Pl I can't stop laughing.

Diagnosed for PNE by Dr. Jerome Weiss in June 2007.Started PT with Amy Stein in NYC.
PT for almost 3 years now without any results.
Pudendal Nerve blocks in August,2007 by Dr. Q left me with sitting pain.
Had TIR approach with Dr. Bautrant on left side with no major improvements and sitting is much worse.Surgery revealed entrapment in the AC.
MRI By Dr. Potter reveals nerve entrapment in the Sacrotuberous ligament and the dorsal branch.
Redo surgery by Dr. S on 25th A

by K » Wed Mar 0, 2:00

e wrote:
This iPod is so unbelievably tacky. It almost trivializes our painful nerve conditions and makes surgery like something fun to look forward to.
That's what I was thinking, too!
Al wrote:
hahahahhahahahaha. Karyn,AM and Pionogal I can't stop laughing.


I thought it was pretty funny, too! I'm glad I could share the humor!
I've never had any experience with the man but you've gotta check out his site which shows his face filling up the screen on the iPad. I tried to create a link to the newsletter, but it's not working out for me.

Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Uterus swelled within a 1 week period in 04/08 - . Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
K


by p» Wed Mar 02, 6:00 pm

why can't he smile normally? he looks like a super villain. (I've been watching too much of Despicable Me) And yet, every time I return to his site, the marketing makes me want to believe he can help me, when I went through a surgery and know from experience he didn't have a clue what he was doing! Operated on me, and came out saying he found some "fascia".... Fascia is normal! I just want to hear that real people get better w/him... lots... from their mouths, not from his site.-

straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bin 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)

by p » Fri Oct 08, 10:49 pm
e,
how much did you pay filler? when I had surgery w/filler, he billed insurance about 60,000 USD. My Bautrant surgery was 11,000 USD. A friend recently had Botox w/filler and it was 20,000.
Looking forward to your reply.

Re: Does Dr. Filler accept insurance?
by g» Fri Mar 0, 7:00 am

i am so sorry that you had to go to him PG, he is a fraud, we should get the word out to absolutely not go to him at all....this is one doctor who we can all say NO to!

G

by F» Sat Mar 02, 3:07 a

Is this only in the newsletter because I can't find anything about it on Filler's website. I know someone who is considering having his surgery. I have tried to warm her and told her to talk to people on this forum, but I think she just wants to be cured so bad and that's all she can think of right now. I asked her about the ipod facetime, but she said he didn't say anything about it at their appointment last week. I wanted a link to be able to show her.-

Re: Does Dr. Filler accept insurance?
by K » Sat Mar 03, 3:39 pm

Hi F,
Yes, that info is from the newsletter. I signed up for it via email a few months ago, not because I'm interested in Filler but because, well, it's info. No other reason, really. I also tried to view the newsletter via his site but was unsuccessful
I'm sorry to hear about your friend. Is she having PN decompression surgery or is it his famous obturator surgery? Either way, I wish her the best. Maybe you could copy the URL to this topic and send it to her in an email?
Warm regards,
K

by l » Mon Dec 20, 10: pm
I am 5 months post surgery for pudendal and arbitrator intern us damage. surgeon is suggesting this injectable drug for one month trial. Drug is for RA treatment, drug depletes your immune system, so cannot take at same time with any other sickness symtoms. Has anyone tried this drug with any success whatever?l

Re: Enbrel for post surgery pain
by e» Tue Dec 2, 5:17 am
There is a pilot study showing that Enbrel is efficacious for sciatica.
http://www.medscape.com/viewarticle/537922 (registration required)

Sep 16, 2004
Geneva, Switzerland - A pilot study of the TNF inhibitor etanercept (Enbrel, Wyeth) in patients with severe sciatica has shown that the drug appears to be effective, prompting further calls for randomized controlled trials in this potential new indication [ 1 ].
The side effects are a bit scary though especially with the flu season approaching.
The medication is horribly expensive (something like $3,000 for a month supply) and I am not sure if many insurance plans pay for it
.

e
Re: Enbrel for post surgery pain
by l » Tue Dec 2, 4:4 pm
Thanks for your reply. I see you also had surgery by Dr. Filler in 2010, did it work??

by l» Tue Dec 28, 2010 1:27 am
I think 5 months is too early also. I do intend to take it further at the one year mark. Filler is the one who suggested Enbrel. I have a PNE buddy who had her "redo" with another dr. than Filler and is excited with the results, she is one week out from her proceedure, I hope she keeps making progress. Other dr. did mention "redos" that he recognized as Fillers work.
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
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Re: Aaron Filler in Santa Monica

Post by superuse »

-Appears some gal named maj fell on her tailbone and is in horrible pain, having bad thoughts for 1yr and 3 children. Feels she needs surgery. Anyone heard of Dr. F? . Believes (like most) she has nerve damage. and the condition"PNE" is the cause of her pelvic pain. She feels she needs a "few testimonials" before cashing in her retirement for surgery with him. (how about some research on the entire concept?)

-Usual stories about Dr F.

-Ms C concurs, and definitely you need surgery (but with one of the good surgeons not Dr F.).

-About a year later maj reports-- Ya know guys , maybe I don't need surgery. I've been having a lot of improvement with a book called "Headache in the pelvis"... (and of course... thanks Ms. C :roll: )
maj

Dr. Filler Anyone?Hi all,

I'm new here and thank you all for sharing your personal stories. They have helped me tremendously in dealing with this nightmare of PNE.

I got either PN or PNE after an injury last year to my tailbone/private area when I fell off a chair. At first I thought I broke my tailbone, and then about 6 weeks after the injury the nerve pain began...rectum pain and burning, bladder pain, feeling like I was being shocked in my clitoris, can't sit, can't have intercourse, can't wear regular pants, etc... ....... Then I requested the blocks be done in my icheal spine after reading Dr. B diagrams of the nerve and started to get relief in my bladder and upper vaginal region. They allowed me a trial to do the injections one every 5-6 weeks for a year. This I have done and at times had pain of only a 1 toward the end.
....
At this point, I need to look into a surgical cure for this problem because I need help. I have three small children and the depression from this is just about doing me in.
So, this leads me to my question...Dr. Filler is closest to me and says he has the best equipment for detecting the entraped area, and the least invasive procedure to decompress. I need advice from anyone who has been to him. My insurance won't pay for any of the docs who work on PNE because they are all out of my "network" so I'm looking at cashing out my retirement to pay for this surgery. I need to make sure I get some testimonials before making this choice.

Thank you,
_________________
pudendal nerve damage/entrapment after injury in 2008. Have received a total of 11 pn blocks with great relief but no cure
.
C
Thu Oct 01, 7:40 pm

I agree with you it's time to stop the blocks and look into surgery. My experience with Houston was great; they have seen the most people.

S is someone here who had surgery with Dr. Filler; it was unsuccessful. I have heard of a few others here who had treatment with him but nobody is raving about their results. I think his website is impressive looking, but I'm not convinced from posts on the forums that the results are there.


Thu Feb , 3:00 pm
p
Re: Dr. Filler Anyone?
from my own personal experience with Dr. Filler, I would only recommend him to my worst enemy
_________________
straddle fall age 7 w/bleeding labia
frequent urination, tampon pain in teens
PNE - 2002, age 26
Surgeries:
Dr. Filler 2005 (useless/harmful)
Dr. B 2008 (TIR & Vestibulectomy) (intercourse pain gone, sitting pain worsened some)

.....
Sat Feb 26, 6 pm
p
7:52 pm
Re: Dr. Filler Anyone?
Quote:
I know that Filler is very concerned and careful around the ligaments. Because of this, he possibly can't do the surgery as well as it needs to be done. I know of a guy who had the surgery with Filler 4 times
.

TRUE. After my failed surgery, only 3 months out, he was ready to try another one on me. also, I know someone who went from being active to being completely bedridden and having to walk with a walker after a Filler surgery... she is quite devastated and bankrupt. Maybe it's the same lady as mentioned above, or maybe not. Who knows.I've heard through word of mouth of one person who got better via Filler (a friend of a friend of a friend). This is the first I've heard ever since my 2005 surgery.

I know that my own personal records from his office showed what seemed to be inflated progress and improvement, as he said the patient is improving when I was not... maybe he just meant my surgical scars were improving... finally after 3 months of records, one record states that the surgery didn't work and we had to try a new one. But God had other plans, ....
....
Sun Feb 27, 3:22 pm
p
Re: Dr. Filler Anyone?
hi g, my friend who had surgery with filler is now bedridden too. she lives in Alabama though. She is still in pain and has not had any redo's yet... she is taking daily dilauded which barely touches her pain. Before her surgery, she could walk, but now she needs a walker and something to help her get out of bed. She can't get the doctor on the phone even in emergencies when her own doctor calls Dr. Filler he won't reply. It's so sad, she thought he'd be the answer to everything... and instead she has a giant loan she has to repay for a surgery that made her in misery. There are so many of these horror stories, that I don't recommend Filler. Perhaps he's helped people... I've just never run into them... and my surgery was a complete waste. Thank God I didn't get as messed up as some of these people did! Oh my!

Fri Feb 25, 11:am
Suz
Post
Re: Dr. Filler Anyone?
A friend of mine had surgery by Filler. Based on her experience, I would not recommend him. She is still in A LOT of pain (more than before), and now he wants to do another kind of procedure. She is now bankrupt from his fees, and has had to be on the phone demanding a call back from him more than several times. Please go elsewhere for treatment.
_________________
PN pain after vaginal laproscopic hysterectomy. I am trying to decide if sugery is my best option to get my life back.

Sun Feb 27, 1: am
g
Location:
Re: Dr. Filler Anyone?
I am befriending a lady in California who had two surgeries with Dr. Filler and was bedridden. She had a re-do with Dr. H 1.5 years ago and is now enjoying life again. She goes to movies, to dinner, takes trips etc.

g

Mon Feb 28, 2:0 pm
john
Posts:
Re: Dr. Filler Anyone?
From http://www.nervemd.com:

"Overall, the surgical treatments for pudendal nerve entrapment syndrome at INM are new and quite different than those offered elsewhere. Dr. Filler's success rates are 85-90% good to excellent - far exceeding the uncertain outcomes of older types of pudendal nerve surgery. Many patients can expect significant or complete relief of symptoms from effective treatment - often within days of the surgery."

Pretty lofty claims! I got very excited when I saw this, especially because I am in California. Now that I have read of experience of others, I'm not sure I even want to contact his office. Has anyone here had positive results with Dr. Aaron Filler?

maj

Two years since pn injury
Hi all,

I feel obliged to post an update on my progress so far. I got the pudendal nerve injury from a fall in March 2008. I had horrible pain from my tail bone through my anal region, through my vaginal area and into my bladder and rectum. I could not sit, could not have intercourse, could not even wear pants because the pain was so bad 24 hours a day. I got to the point of feeling suicidal because of this pain nightmare. Since then I underwent 11 pn blocks (steroid injections) to the nerve. This helped me after the third injection. About half the pain went away during this time. I decided to stop them because of the radiation exposure from the CT scan.

I then scheduled pn decompression surgery with Dr. B in Belgium for Jan 2010. I ended up cancelling this surgery because I had such incredible pain relief by December that I was nervous to mess with it. I now have little burning pain, and little if no bladder and rectal pain.

This is what I did over the two years:

-Had several nerve blocks over the first year. Did help, but didn't solve the problem.
-Never sit without a cut out pillow. Even now I NEVER sit without it and try to avoid sitting most of the day.
-Don't have intercourse (As hard as this is for a spouse, I believe it spared me more pain)
-Use baby wipes after bowel movement to avoid more pushing and rubbing to be clean.
-I used neurontin (gabapentin) the whole time and still do.
-I also take amytriptaline which helps me get a good night sleep
-I avoid constipation by taking fiber tablets every night.
-I take a B complex vitamin daily for energy and help for my nervous system.
-I don't wear tight pants.
-I sleep on my stomach which for me seemed to help.

-Most importantly, I read "headache in the pelvis" a few months ago and had noticable relief after doing the pelvic floor relaxation. I have never gone to a phys therapist, but just did the relaxation of my lower muscles which I didn't realize were clinched up constantly like a dog with his tail between his legs! I constantly have to remind myself to release them. I have had so much pain relief in the last couple of months that I'm thinking I may get over this without surgery.

I know some of these things seem silly, but for me it has worked to get me to a totally tollerable pain level and I'm wondering if the pelvic muscles play a bigger roll that seems possible. I'll keep you all posted in a few months, but for now I'm really hopeful and want this for all of you as well.

Feel free to email me if you need to talk or have questions. Also, I'd like to thank Ms. C for always being there and helping others through this nightmare.

A_________________
pudendal nerve damage/entrapment after injury in 2008. Have received a total of 11 pn blocks with great relief but no cure.

maj
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
superuse
Senior Veteran
Senior Veteran
Posts: 234
Joined: Thu Jan 03, 2008 1:08 pm

Re: Aaron Filler in Santa Monica

Post by superuse »

Some follow up regards a previous post. Unsuccessful outcomes from the pne surgery, such as the one below, are more the norm rather than the exception. The exception from the norm is any significant reduction in symptoms for a lengthy period.

There are millions of men experiencing pelvic pain symptoms in the western world. There are about 350 of these procedures done worldwide per year on men by about 7 surgeons. Mostly unsuccessful. There are about 500,000 heart bypasses in the US alone each year.
by Mr J » Thu Dec 12, 2011 constipation

Hello Everyone,

It has been some time since I have been on the PNE message boards. I was completely pain free for almost two years when my rectal pain reemerged this past August. I had severe constipation this past August and the pain came back and has been increasing in intensity. For almost the past two years, I have been able to sit painless for hours on end without taking any medication or using a special cushion. However, now that the burning pain is back, I am again have burning rectal pain and unable to sit without the use of a special cushion. Though I am very fortunate to have had complete pain relief for two years it is very frustrating to be back in constant pain. It has been four months since the pain has come back and it appears not to be diminishing. I am at a complete loss as to how to proceed or what to expect in terms of my prognoses.

The precursor to my initial PNE pain was severe constipation in fall 2006. I had the TG surgery in Texas in March 2008. I didn’t notice any improvement or reduction in pain until July 2009. From July 2009 – August 2011 I was very much pain free – able to participate and enjoy the normal functions of life. I have been back in pain for the last four months and considering my two year pain remission I am at a loss as to what options I should investigate.

Your thoughts are welcomed.

Mr J
Age:43 | Onset Age:36 | Symptoms: First urinary and backside, golf ball feeling, now ok (no heavy exercise) . Major onset seemed to be with heavy coughing spell , felt "tearing" or nerve pain in rectum/prostate. | Helped By:Hot showers,sleep.Worsened By: Type A obsessiveness ... Stressing, what-if thinking, weights.
Not a doctor. -

The usual... anxiety prone programmer (my case), accountant, lawyer or self employed sitting 50 hrs/week combined with compulsively exercising on a bike,weights or running to compensate for stress. Also aka "graduate student syndrome" New email sigma556@hotmail
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