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Hi, I have been reading everyone's posts with regard to piriformis release surgery. I underwent this surgery with Dr. Filler in January. I, like the rest of you, had been undergoing severe buttock pain (left), sciatic pain, in addition to lumbar sacral pain. For 18 months (since a car accident) I underwent every type of non-invasive treatment that could be found (e.g., chiropracters, massage, rolfing, physical therapy, yoga, etc.). According to Dr. Filler's reading of the MR Neurography, I tested positive for piriformis syndrome.
For the first 3 months following the surgery, I could barely put weight on my left leg, and had to use a cane even in the house. Although the surgery did seem to take away the pressure of the piriformis muscle on the sciatic nerve, and Dr. Filler said there was scar tissue on the sciatic nerve which he removed, the nerve seems to be worse than pre-surgery. I do feel that I was misled by the article in the NeuroScience magazine that cites the study done by Dr. Filler, in which it states that not a single patient was worse than prior to the surgery. I continue to be disabled, and I have to use a cane for anything more than walking around the house. I have used a Fentanyl patch since May when the pain was not going away; in addition, the pain meds have to be supplemented with Percocet if I am active at all. I am in my early 50's, was always active in my life, did yoga for 30 years, etc., and the idea of living on pain meds for the rest of my life is seriously depressing.
Another disappointment that I had with Dr. Filler was that in May, he administered an MRI guided diagnostic injection (I believed at the time that it was going to tell us what was still SO WRONG with my leg); in actuality, it was just a steroid & pain med, for which $2,400 was charged cash. He later told me that I could go to the Cedar's Pain Center and get the same exact injection and have it covered by my insurance. I am now a regular at the pain center, getting trigger point injections every month or two.
Please note that the piriformis release surgery is not a silver bullet! Quite honestly, the post-op pain was horrific, the body felt like a torture chamber.
You may have better results, but consider this as a cautionary tale. Think more than twice, and although Dr. Filler is considered an expert in his field, you may find another doctor who actually is covered by your insurance, and is more willing to make himself available for follow-up care when things don't' work well.
Hope you all have better luck, and can live a relatively pain free life,
All the best,
Nerve Pain
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Nervepain,

Sincerely sorry about your outcome. You are correct, anyone that is looking at a surgery should always think twice before any elective surgery.

However, I feel compelled to respond to parts of your post. Not really to defend Dr. Filler but to provide, what anyone in pain needs most, HOPE.

The outcome study you cited did, indeed, show that there were cases where people were worse post surgery. It was a very small number of cases if I remember correctly. These data points did not escape me as I made my decision to have the surgery. Additionally, the number of good to excellent outcomes, on a percentage basis, far exceeded the odds of similar outcomes for back surgery.

My decision to have this surgery was based, in large part, on the data shown in the outcome study and by the feedback by people like Elliot and Donna. Additionally, I didn't see an acceptable alternative. My nerve issues, despite every other treatment that I sought, were not improving and I could not find another physician who offered a less invasive way to potentially fix my problem.

With regard to follow-up, I have had no problems with receiving answers to questions or obtaining help from Dr. Filler's office when I needed it. Is it as convenient as my personal physician down the road, absolutely not. However, I do receive the help when I ask.

Having said all that, pursuing treatment from Dr. Filler is expensive and it is not convenient. It does have risks but so does every surgery. There are no guarantees and that is why every surgery is considered a last resort and should receive a great deal of soul searching.

As I, and others, have stated, post surgery is no picnic. Yea, it hurts. I'm sore and I get tired easily. I was told this would be the case. However, I am getting stronger and I am getting better. I pray every day that my improvement continues. I pray for the others on here as well who hurt. I will include you in those same prayers now.

I am grateful that you posted your outcome so that it provides others with more food for thought, if they needed it. My only point in responding is that I also want to reinforce hope for those same people because hope has been very important to me over these last few months.

With regard to the Cedar injection alternative, I will certainly be quizzing Dr. Filler's office about this information. I asked about this recently and was told that he was the only provider of MRI guided injections. Thanks for the info.
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Hi everyone

Dr Filler also offers MR Neurography in Norristown, Philadelphia.

Jo :wavey:
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First I d like to thank Nerve Pain and David for their recent posts. I must say it took me a while to digest Nerve Pain s post but after thinking about it I realize I must be prepared to hear the good and the bad.

I have been and still do feel extremely hopeful that the surgery will provide some benefits and best case, solve my problem. Considering all I ve been through so far with other treatments with little relief, I am becoming resigned to having the surgery (if that's what's in the cards). I will go into it positive (which I believe is half the battle) but realistic. There s an old post by JLB where he says DR. FILLER NEVER TOLD ME HE COULD FIX ME, HE SAID HE COULD MAKE IT BETTER, HE SAID, IT IS NERVES, YOU DON'T KNOW & NOBODY KNOWS I guess that s true, nobody knows.

One other thing worth noting is that for the most part, people with positive outcomes to treatment eventually fall off the radar because they no longer need help and/or support. Typically, we only read about people currently suffering. I m glad Nerve Pain posted, although discouraged at first, like I said it s good to see the other side and like David said, it s good to have this info in order to make an informed decision. I too believe staying positive and continuing to have hope is essential.

I m truly sorry that you had a bad experience Nerve Pain. In the end, did Dr. Filler drop you or did he make an effort to continue to help you after the surgery or, did you elect to stop seeing him? You mentioned that the release took the pressure off the pirformis muscle on the sciatic nerve but that the nerve is worse. Did Dr. Filler offer a reason for this?

Thank you.
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Today makes 4 weeks post surgery. I've gotten much stronger and I have spaced out pain meds to 1 Tylenol #3 every four hours. Yesterday, I actually went 5 hours but it was a slight mistake as I was pretty darn sore at that point.

Up and moving around pretty well. Actually made a lot of progress over the last week but I must have overdone a little at some point in the last couple of days because my right GT joint has gotten inflamed again and is sore. This was a very disappointing setback for me. Additionally, my left leg nerve pain increased a bit but it feels like pressure, not pain and is located behind the left knee.

However, I was warned this would be the case so I'm trying to keep it in perspective. I'm trying to look at where I was X-Mas day versus where I am this morning and it makes me feel much better. I'm also remembering that Filler said it may take months for the nerve pain to chill out so I guess I'm being my normal impatient self. I'm going back to work tomorrow, at least for half days as I continue to gain strength.

Went to the other site and, man oh man, there's a bunch of us out there. Why isn't this syndrome more widely known and publicized and treated?

Oh well, hope all are doing well.

David

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Hi, my daughter has been in debilitating pain for a long time. She can not sit, has legg pain, walks because she wants to be normal. She has appt. with Dr. Filler on Monday. We are out of state. She had L4-S1 fusion , making a great recovery, then the first day of her junior year in college, she used her backpack with books in it. Bam, her nightmare started. She is on more meds with this pain, than she was after her fusion. We have tried so many modalities I can not keep track of them. We are seeing filler because neuro is pushing a sacral implant to mask pain. While I support anything that will allow my daughter to have a life, I need to make sure of her diagnosis. They say it is scar tissue, but my daughters left butt cheek hurts so deeply. My daughter was a up and coming runner, now we just want her to be a person who can walk and sit. I am new to this post so I hope I am in the pirifomis syndrome section. Thanks for your forum. We fly to LA on Sunday.
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Hi Menzie,

You might want to talk to Dr. Martin in Dallas and Dr. Heinrich in Milwaukie.

Please remember above all that this surgery is highly risky and all too frequently leaves more scar tissue than it solves.

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Menzie:

Good luck with the appointment. I hope your daughter can find some solutions and relief. Please keep us posted. We're all just trying to get through this and get better. It's nice to have a place where others know how you feel.
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Menzie,

Yup, you're in the right spot. I am so sorry your daughter is going through this. I can relate so much to how your daughter feels. I'm a endurance athlete and, like your daughter, I am walking just because I want to be able to "normal" things. I, too, can't sit, stand or walk well (and a year ago I ran an ultramarathon so this a HUGE change for me). You're daughter is very lucky to have a mom who is committed to helping her. I know for me having the support of my family is what is helping me make it through the day to day of this. It makes all the difference in the world.

Please do keep us posted on your daughter's visit with Filler. I am among the members of the forum who is planning on making the "pilgrimage" out to see Dr. Filler. I'm in AL so it's going to be quite a trip. I am excited and interested that you are going out there and would love to hear about how your daughter's appointments go and your impression of Dr. Filler. Hearing other people's experience is helping me make the decison to go out there. Also brings me a little bit of hope that someone is out there that really may be able to help.

I hope he can help you and your daughter find out more answers to her condition and hopefully, a treatment that will help her get back to normal.

Take care,
Julie
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Yes indeed, that is a lucky young lady who has a parent like you for support. Please let her know that others are pulling for her as well.

Well folks, a new milestone in recovery accomplished today. I WENT BACK TO WORK!!!!!! Okay, it was only half a day and will be for this and next week but an accomplishment nonetheless.

It felt great but wore me out. I know some of you would love to go back to work so please don't take my celebration in the wrong way. I'm just happy and thought it might let those of you who are going through this that there is HOPE. I'm no where near my old self but this was a tiny step, amongst many, many in that direction.

Hope all is well with everyone.

David
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Hey David,

Congrats on getting back to work! That is VERY good news. Always good to see your posts. Thanks for sharing hope.

Leesa
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Thank you for responding to my post. My daughter and I have been on this journey for over 15 months. I really appreciate the posts and updates. I have read them several times from start to finish. I will keep you all updated. I am very scared and excited. My daughter is so scared to fly because she can't sit, and we have had to stop a few meds in the hopes they may find the problem and be able to fix it. It would be really awesome to have this daily trauma gone. Most people have a traumtic experience then ever so slowly it starts to fade. People with this problem are living in what I call daily trauma, never easing. Hope for us, as I truly hope for you all. Thanks again:-)
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Did u go to India?
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Morning folks.

I'm going to use rounded numbers for expenses but here is the fallout.

$98,000 Cedar Sinai bill - BC/BS covered all but $220.00
$5,000 Surgery Imaging - BC/BS covered all but $21
$3,500 Anesthesia Bill - BC/BS covered all but $260 ????(questions about)
$20 Copay for Filler internist prior to surgery
$20 Copay for pre-surgery testing

$20,000 Filler bill - won appeal to BC/BS to have him treated as in-network but they will still only pay allowable - in other words, my 38 page appeal simply changed the pay percentage from 65% to 85% of what BC/BS feels the reasonable and customary charges are for a neuroplasty type of surgery

I asked, and received from BC/BS, an estimate of their allowables after I gave them the coding from Dr. Filler's office prior to surgery and I'm guessing my end of this $20,000 will be around $13,000. Ouch, but if he truly fixed me, I'll simply negotiate a monthly payment with Dr. Filler's office and smile every time I make my monthly payment. First though, I am going to try and negotiate with Dr. Filler's office to lower this bill to something closer to what BC/BS feels is customary and reasonable. I have no real idea of how that conversation will go but, to date, they have been pretty flexible and reasonable. I will certainly let you folks know the outcome of that discussion. Just don't tell on me. Please.

Obviously, this doesn't count air fare, hotel and travel expenses. We kept every single receipt from the travel and I'm thinking I will have enough to let the government give me some of my tax money back by deducting from my taxes. This will include the mileage from the house to the Houston airport(about 150 miles one way).

As I posted before, using Dr. Filler is not convenient nor is it inexpensive. However, I just did not see an acceptable alternative. I just refused to have my life completely changed without going down swinging. My fervent hope and prayer, for both myself and the rest of you as well, is that my(your) actions, money, tears, sweat and blood were(will be) put to use resulting in a successful outcome.

Keep your chins up, way up, and NEVER GIVE UP HOPE. From what I have read, each of you appear to be fighters. Keep fighting.

David

p.s. If any of you need to appeal to your insurance companies, I can outline what I included in my "thesis" to BC/BS. I'm still of the belief that I never really convinced them. I think I just wore them down. Thirty-eight pages of appeal can do that.
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Hi, All.

I have gone through everyone's emails and have lots to say/ask.David, I was interested to see your breakdown of expenses. I noteiced that the aneasthesist's fee was not included in the hospital fee so you paid separately. Also the surgery imaging, was that MR Neurography imaging during surgery? What intersts me is that there is a separate Neurography Institute from The Institute for Nerve Medicine where Dr. Filler works. You would think since he invented MR Neurograohy that it would be at his Institute forNerve Medicine where he is located. Alsoo interesting that anything sone at his Institute is paid for privately and things at the hospital are paid for by your insurance. I am now so used to the Canadian system that the American seems overwhelming, especially the hospital. I haven't seem anyone who has paid as little as the estimated cost of between $35,000 and $52,000. What about you Donna? Seems like I remember your surgery being close to $100,000 (Cedars Sinai fee).

David, wondering what your job is that you have returned to? Are you sitting, moving around, walking. Have you noticed that you are the only guy who has stayed in this discussion. You are so open and expressive compared to many males I know. That is great. Congratulations. Your wife and children/child are lucky.

Leesa, you were asking about pain and sitting. What I have noticed is that I sometimes or rather often have a recation after I do some aggravatig activity. For instance I may sit at the computer for an hour and it will be an hour or even longer and I get the reaction and realize I am paying the price. Same with walking--I can walk and it may not be too painful I am walking but about an hour after I do it I am in lots of pain. I use a TENS almost constantly and I think it disguises the pain up to a point. If any of you haven't tried a TENS, I highly recommend it for those it works for. It has really been helpful for me.

Donna, how many hours of surgery did you have? I am also amazed at how long some of the surgeries are. I somehow remember 2-3 hours as being the estimated time in Dr. Filler's research though I could be wrong. It still seems to me some of what he is doing is a toss of the dice as someone said yu are dealing wiht nerves and it could be muscle pressure, scar tissue, damaged nerve. Really noone knows. Dr. Filler also mentions that 42%of people who have piriformis also have lower back lesions which made me think of Menzie's daughter. Menzie, so sorry about your daughter. She is so young to have such a problem. Why did she have a fusion at her age?

Nerve Pain "unnerved me" (so to speak) about her experience. It makes you kreally think about what you are considering as far as surgery. That is why I hope David doesn't stop keeping us informed. Please, please stay in the discussion and let us know how long the recovery takes. Wonder what happene to JBL. He was doing a job that was both physical and physical.

Julie, I hope you alos keep us informed since I think you are seeing Dr. Filler about now if I remember. You have a very admirable job working in intensive care. I spent lots of time in there with my newborn granddaughter at Sick Kids in Toronto. I was so impresed with the staff there. Hope you are able to get back to your job as well as your climbing. Are you from Alabama? Is that what Al means? I grea up there in B'ham but moved to Canada with my ex husband.

Is anyone else getting these blue/ blank places with certain words such as "pain". I found out it is advertising which kreally annoys me. Just click on it and you get an advertisemnt pop-up.

Too lazy to edit. I am still struggling wiht my decision, especially since I think I am older than most of you and also I have had this condition for so long. It took me about 4 years to find someone in Canada who knew anything about piriformis and or treated it wiht botox injections and I have been having the injections for about 3 years. Helpful but certainly not a cure.

Hope I haven't put everyone to sleep with this long email. Bye for now. Looking forward to hearing from everyone.
Shirley
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