Piriformis release surgery, discussion and information

Julie, I remember being told that a discogram is fairly painful....hope yours wasn't too bad. Wishing you speed with getting the referrals and treatment you're looking for.

Sadie

For whoever asked, Dr. Barbaro is at the University of California, San Fransisco....and there is a magnificent veiw from his building!!

Hi Julie,

Glad the discogram was negative. That would have complicated things for you. And as far as your long road ahead.....at least you're moving in the right direction. So many of us bumped along for YEARS taking side roads and back alleys before figuring out what was happening with our bodies. It sounds like you and your doctor have a clear vision. Keep focusing on that and before you know it this will all be behind you. (No pun intended!) :)

And perhaps when it's all done, you'll make your way back out to California for some fun... like rock climbing at Joshua Tree or Pinnacles or running in Bay to Breakers!

Stay positive!

Margie

Julie:

Glad they ruled out a disc problem so you can put that aside. Now you can move on to fixing the real problems. Good luck and let us know how it all goes.

David/Donna:

So I knew this but was told again today by Sheila (Dr. Filler's office) that for 2 weeks after surgery I have to get up every 20 minutes and move around (sleeping at night excluded). Did you guys REALLY do that? Doesn't sound very "restful" to me!! Just wondering what your experience was with this. Thanks.

Leesa

hello everyone,

thanks very much for all your thoughts and prayers. Isn't this a shmozzle we're all in. Two days post op and I don't really think it worked. Of course many would say that there is still inflammation etc. but my experience with disc surgeries, carpel tunnel, etc, is that when it works, you know about it right away. I have been a physiotherapist for 8 years also. Most of the people who don't notice immediate relief will claim to have had some benefit after a few months, but I feel that could be attributed to lifestyle, rest etc. I think that if I were to avoid standing or sitting for more than 20 minutes for a few weeks, my pain would decrease dramatically, but that is just not realistic, and so I'm not sure how those who have had surgery by Dr. Filler can honestly attribute their relief to his procedure if they have adhered to this protocol. I think that the injections are misleading also. I had flouroscopy guided injection to the facet joints and the hamstring origin prior to having the CT guided injection to the piriformis. The only thing that provided relief was the pirifromis injection, but only the first one, although I went on to have a few more. The surgeons here, and others, feel that if you drowned the sciatic nerve with steroid or analgesic you will definitely notice relief, but that doesn't necessarily mean it was the piriformis. Makes sense to me. I'll probably wait a few months and consider the spinal surgery in Canada, because it is a common procedure, and the government will fund it, although it will take about a year I am sure. In all honestly, I would discourage people from going to California, as I think he has created a large database that is very skewed in favor of his procedure, and nobody ever says it was remarkable and it worked. I understand the argument that those who were cured stopped surfing the net and participating in forums but that doesn't wash with me. For 7000 dollars, if you really are sure you have piriformis syndrome, I'd go to Bangalore. As oppose to the 50 or 70g that Dr. Filler charges. Not to be too negative, but I think Dr. Filler is taking advantage of desperate people, and he is very keen on doing bilateral procedures, which is kind of curious, to say the least. They do take care of you very well here, and they are very honest. When all was said and done, it was my decision to have the piriformis instead of the spinal. I based that on the positive response to the injection, but if it worked once, why not the other times? I said I would quit trying to seek a cure after 5 years, which is coming up shortly. I am not sure if I will even undergo the spinal op, as the MRI does show significant degeneration and foraminal encroachment at L5 S1, but many people are walking around with pain free backs whose MRI's would look alot worse. Sincerest thanks for all your support once again.

Ronnyjotten:

I haven't had surgery yet but from what I've read and heard and researched, I would give it more than two days to decide whether or not the surgery worked for you. Staying positive is key in any recovery.

I've been extremely active my whole life (marathons, triathlons, etc, etc.) and I've been "resting" for nearly a year and a half with no improvement....most times way more than 20 minutes at a time so I can't completely get behind your assessment that just following the 20 minute protocol would provide the same relief with or without surgery (if I misinterpreted what you were saying, forgive me).

I don't know if Dr. Filler has the cure (or any other surgeon for that matter) but for me, I have to give it a try. I ve tried everything else and know I can t continue to live the way I ve been living. I feel a small need to defend Dr. Filler. I believe he is a professional, knowledgeable and competent doctor. I m NOT having bi-lateral surgery so there s at least one of us out there!

To be frank, I wouldn t discourage anyone from seeing Dr. Filler or any other doctor they feel is right for them. I guess I just wanted to give my 2 cents worth and encourage anyone who has been through what most of us have, to continue on their path and go with what they feel is best for them.

I really hope you give yourself more time and really hope this surgery worked for you.

Take care

Leesa

Two days is WAY TOO SOON to be thinking like this. I had subtle but real improvements continuing to 4 months out. Be sure that you follow Dr. Filler's instructions for stretching and exercise carefully. His are different than some others doing this surgery.

However, you should also not expect to be "cured." It happens for a few lucky people but most of us just improve. If you look at Dr. Filler's research, he is very clear about this. I don't have it in front of me but the success rates that are generally quoted are for "good" not "excellent" results. Those are relative. For myself, yes, I am better than I was prior to surgeries but not better enough to continue working or quit taking tons of meds or to be able to do much more than walk. But I am grateful for that, I was at my wit's end, as they say, before the surgery. The pain was absolutely terrible.

It has been 5 years since this pain came out of nowhere, while I was walking on a beautiful sunny day, totally changing my life. Doing it over again, I would have bolted out of my midsize town and headed for a major medical center as soon as it was clear that the PT wasn't working. No pain clinic injection is going to fix this. Most physicians don't know what to do when it becomes chronic. I would find a neurosurgeon who does peripheral nerve work (Filler is one) but I would not rely solely on the injection method of verifying that it is PS. I would look for a surgeon who uses dynamic ultrasound and MRI neurograms such as UCSF. I don't know of any other places but I haven't looked.

Don't give up!!

hi leesa,

i am definitely giving this more time, and i'll try to stay optimistic. Thanks for your encouragement. What I meant by the whole 20 minute thing was that you are supposed to avoid standing or sitting for more than 20 minutes following the surgery. I was just stating that that protocol alone would provide quite a bit of relief for most people. And you are right, I should not try to discourage anybody, perhaps caution would be more appropriate. I am a physiotherapist and many therapists would be quite apprehensive about this undertaking, as the reasons behind this kind of pain are endless, instability being a major one, that surgery cannot necessarily fix. Not sure what you were told by their institute, but i was quoted a price of 20 000 dollars initially. I then worked towards getting that money, and when I went to arrange the travel, Dr. Fillers receptionist informed me that the hospital fees would be another 50 000. I was quite upset that this information had not been provided the first time around but that seemed to fall on deaf ears. I am not sure if you know this, but many surgeons release the piriformis muscle prior to doinga hip replacement, and do not re attach it. Therefore, it is not that complicated a procedure, as Dr. Fillers report indicates. However, if you ask an orthopaedic surgeon to just cut the piriformis, he or she would not likely do it, because it is a very questionable diagnosis and treatment. I know that that kind of money would potentially exhaust alot of people's savings. For my own sake, I did the splits very forcefully, and tore some muscles, which makes the diagnosis a bit more likely. I will absolutely let you know how everything pans out in the long run. I think I might even be feeling better today.

Since you're a physiotherapist you know this but others may not. It is dangerous to just cut the piriformis using endoscopy coming in through the hip, the method preferred by orthopedic surgeons. The visibility through the scope apparently isn't good enough to determine if the sciatic nerve passes through the piriformis rather than passing underneath. If it does pass through it (about 15% of people have this anatomic difference), cutting the piriformis releases the normal tension on the muscle and the sciatic nerve moves with the muscle. Its important to have at least a MRI Neurogram done prior to surgery to illuminate the anatomy.

hello everyone,

thought people might benefit from some good news. I have not had any foot pain today. I have been standing here reading this post for an hour and my foot has not reacted. Back is sore, but I am very encouraged. Leesa, I would definitely hold off a bit more. let me talk to you in a week or so and tell you how things worked out. Type in the words Wockhardt New Zealand Piriformis and you will definitely come across a video of a gentleman who was cured of piriformis syndrome. He was unaware he had it until going to Wockhardt Hospital in India. This thread does little to support the scientific journal that Dr. Filler has on his website. I question the "good to excellent outcome". Good based on what criteria. Good is a very vague term. How about a pain scale, a functional analysis, something a little more specific. I really don't see the benefit of the small incision either. What is the big deal of the old fashioned larger, more lateral incision. I am sitting here right now, and I was just operated on two days ago. Reason being is the incision is very lateral. The doctor was able to visualize the sciatic nerve fully. Look into Wockhardt hospitals. They pick you up at the airport and do everything for you. For a very low price. I think alot of people have to revisit the possibility that their pain is coming from the spine, no matter who said it wasn't. Also, MR neurography does not seem very accurate. "areas of hyperintensity" what does that mean, the nerve shows a little brighter. you can in fact visualize nerves on traditional MRI. I honestly feel that trying to do this operation with such a small incision makes for a longer recovery, and I am living proof. I am fully intending to return to my job as a home care physiotherapist within 3 weeks. I am walking without a limp, I never had one since I woke up. It is not surprising to hear about Donna having an abscess either. Think about this. Is it not the depth of the incision, as oppose to the length, that influences your rate of recovery. I know I am making no fans here, but forget about prolotherapy, rolfing, ART etc. They are not accepted in mainstream, nor is MR neurography, and there is good reason for that. Insurance companies would pay for them, rather than continue to pay for disability claims, but there just doesn't appear to be evidence. Dr. Filler is getting the majority of his referrals from the internet, not respected neurosurgeons. And I still marvel how a brilliant neurosurgeon can fit you in the next day, but not really, when it's 20 grand, his fees alone. Think about that also. Yes there is hope for recovery from this, but it does not necessarily lie with Dr. Filler. Just read all 26 pages of this thread and you will undoubtedly realize that. By going to Wockhardt, you will consult with several specialists, not just a piriformis specialist. The fine doctor who released mine said he had done many and his results were hit and miss. Plain and simple. He also explained it was a simple procedure. And why wouldn't it be. If the muscle is tight and compressing, cut it, what is so hard about that. I am putting my own shoes and socks on, functining fully well, two days post op. I am very glad I didn't go the Filler route, although I must admit it was for financial reasons. His rates are criminal. And the guy who claims this is some personalilty defect, he can go fly a kite. For those of you very depressed about this, I would suggest calling out to Jesus, because he is our only true hope anyway. If the travel to India seems unmanagable, one could space out their flights, staying over in this city and that, and fly first class, for a fraction of the cost that Dr. Filler is charging. Not to be too scattery in this post, but I know that the smaller incision hip replacement was highly revered also, but my experience as a physiotherapist, 8 years I might add, is that it has no benefit, and tends to complicate matters. Why reinvent the wheel? Everybody get off the internet and go back to their lives would they. I am only doing this because I am in the hospital and everyone I know is back in Canada. I will let everybody know the long term outcome, but when I get home I'll have much better things to do than surf the net about piriformis syndrome. Sorry for not being more sympathetic, but I figured this was a sight for information sharing, not sympathy gathering.

Please do share how your recovery goes. I felt great for the first 5 weeks, called this surgery a success. Then I developed hematomas, and my pain is back. Not as bad as before surgery, mostly located in the buttock.

I am still on pain meds, prescription strength ibuprofen and muscle relaxers. Lot of supplements the surgeon recommended too for cell repair.

I am currently 10 weeks post op and hoping this pain will go away some day.

My surgery was done in Cleveland, Ohio. No where near 20k, under 5k after insurance, my copay was in the hundreds, not thousands.

Barb

Ronnyjotten:

Happy to hear you are feeling better today and very sorry to hear you had a bad experience with Dr. Filler s office not explaining the hospital charges to you. They were very up front with me and in writing told me to independently contact the hospital for fees/insurance coverage, etc.

Everyone:

Just for everyone s information, I was quoted $10,050 for Dr. Filler s fees for the surgery for one side. My insurance max per year out of pocket is $7,500. I m banking on my insurance to cover at least a portion of the $10,050. At least I know at worst, the total will hover around $17,550 (excluding tests, injection fees and office visits so far). Yes, this is expensive but I m lucky to have this type of insurance coverage because if not, I would not be able to afford the hospital fees.

Dr. Filler s claims of good to excellent in my opinion aren t any vaguer than ronnyjotten s doctor s statement that his outcomes are hit and miss . I m not posting this message to be an ass or argumentative at all, I just want to give another perspective for other readers. I respect your decision to go to India and do whatever you feel is right for you, ronnyjotten, and sincerely hope for a complete recovery for you.

I believe Dr. Filler s surgery entails more than just releasing the piriformis muscle. It also includes neuroplasty to surrounding nerves which I hope will add to a better long-term outcome.

I personally don t know what the ratio of referrals for Dr. Filler is between referrals from the Internet or medical professionals. I was referred to Dr. Filler by a respected orthopedic surgeon, not the Internet. There are hundreds of Dr. Filler patients that aren t posting on this thread so I wouldn t take what s written here as a great assessment of his outcomes. I still believe people drop off these forums when they are healed. Donna has already mentioned how difficult it is to stay now that she is feeling better which makes complete sense to me. I would also want to put this behind me once I m better but I would have never found the support, information or hope had others not continued to post. I also plan on staying on the Internet to share my experiences, good or bad and to continue to support those who are suffering so they can make an educated decision.

Here s hoping everyone feels as good as they can today.

Leesa

Ronnyjotten,

Thanks for sharing all your info about your experience in India. It sounds like you're having a better day and I know we're all happy for you and hope that you continue to get better.

I agree with you on the size of the incision. Dr. Barbaro makes a very large incision because, as he put it, he wants to make sure he can get in there and see everything and do it right. I feel very comfortable with that. He's a very well respected neurosurgeon, very cautious about who he believes would benefit from this surgery, AND he takes insurance. I just don't get doctors who won't take insurance.

If Dr. Barbaro didn't take insurance, I think I would explore surgery in India because everything I've read about their medical facilities and physicians is great! I'm glad you've contributed to this forum because your favorable experience in India may be the answer for someone seeking help via this forum. Don't underestimate the value of this forum. There is great value in it for some.

Stay positive.

Margie

hello Leesa and Margie,
Sorry for coming off a little harsh if I did. I had just read the whole 26 pages and could not believe the misinformation that was circling. I truly hope that everybody finds the relief they are looking for. Leesa, you are booked for surgery and so you are committed to your decision. I understand that. As far as clipping the muscle versus doing the neuroplasty, the two go hand in hand. I truly believe the other nerves, inferior gluteal etc would not give rise to such horrendous pain, and if they could, that would further substantiate the need for a larger incision. I find it hard to fathom how that many layers of tissue can be dissected and then stitched up again with such a small incision. Nor can I fathom how that would be beneficial. The recovery obviously does not take any less time, as this thread clearly indicates. Having a good look seems to make more sense. Dr. Filler's claims that traditional surgery results in walking for several months with crutches and limited success in treating the condition do not site specific studies. And, after having the surgery just two days ago, I can tell you I do not need crutches. His claims that follow up after 8 years show no deviation in gait is also not comforting, as I do not have a gait deviation only 2 days post op, and walking without a limp is definitely not our ultimate goal. "The traditional surgery often leaves permanent problems with gait" and "recovery takes only a few days in most patients" seems to be a scare tactic for those considering doing it any other way than his. Nobody gets better in a few days by Dr. Fillers approach, that is a fact. I truly believe that Dr. Fillers claims that his approach "improves outcomes and reduces recovery time" are not substantiated. His website is an advertisement, not a scientific statement of any kind. As mentioned previously, I am a physiotherapist. I operated my own practice for years and now work full time doing home care. I am very glad I did not have the smaller incision and the extremely long surgery, it hurts just thinking about it. Having those retractors pulling on all those muscles for that length of time. Ouch. I'm sitting here in front of this computer on a regular chair with a regular cushion. Thank God I couldnt' afford to see Dr. Filler.

Just one other thing. The reason behind my discouragement yesterday was that the orthopaedic surgeon who did the release told me that when the operation was successful, his patients realized much pain relief right away. The neurosurgeon saw me later and advised me that it might take a few days. The neurosurgeon said he would also do a discectomy/foraminotomy etc, next week if I still had no relief. So there are two surgeons who believe that the results should be realized in a short while. I have noticed huge improvements today. I keep walking around the hospital trying to create foot pain and I can't. I can't believe it.

Leesa,

You asked if I really managed to do the 20 minutes of one activity then switch positions. I can't say that I followed it to the letter, but I did make my best effort to do so. On the flight home, it wasn't possible to get up every 20 minutes, but I at least switched positions. Once home, my husband provided me with a timer which reminded me to move. I even got up in the middle of church to go stand at the back for a while. Yes its hard to do, but its worth it.

I don't want to be discouraging on your insurance payments, but I do want to remind you of the "reasonable and customary" clause. I also have a $7,500 out of pocket max for the year. And I naively assumed that is what it meant! Silly me, what it means, at least on my policy, is $7,500 of what they choose to pay. for my surgery, my insurance claims that $5,000 was reasonable and customary and the remaining $15,000 they won't touch. So even though I thought I had it budgeted out planning on reaching the out of pocket max and then insurance taking over, they only paid a small part of the actual costs. David indicated his insurance told him in advance what they consider reasonable, but my company refused to do so. My real out of pocket expenses, not counting airfare etc, for medical expenses last year were over $20,000 (not just for Dr. Filler, but all the other procedures, tests, consultations etc), due to their use of reasonable and customary to figure amount paid.

That being said, I still think its worth it to be pain free!

ronnyjotten, thanks for posting your experience. I'm glad you're experiencing a better day today and hope you continue to get better quickly. I truly hope you get the same relief that I have.

Everyone:


I'm glad ronnyjotten has posted with his experiences and opened up yet another option. I hope everyone will evaluate all options open to them and choose what works best.

I will re-iterate my results. Before surgery, I was daily experiencing pain levels between 6 and 7. On "bad" days it would go to 8 or 9. Good days, right after injections, might be as low as 4. Most nights were sleepless.

By two weeks after surgery, the only pain I was experiencing was from the incision site. 3 months after, my pain level is constantly 0. After surgery I have slept all night, every night and feel the bliss of falling asleep and waking up without pain.

Before surgery I had stopped any form of physical exercise and was not participating in many of my normal work assignments. The day following surgery, I walked without a limp. Two days after I went shopping, admittedly walking slowly and resting, but I was out and walking around. With in a week after surgery I was walking 30 minutes a day and now I'm up to an hour a day. By 2 weeks after I was back at my work assignments and now am doing a full day work, which includes both desk work and hard physical labor.

Why was the surgery bilateral? Simply put because I experienced equal pain on both sides. Bilateral makes sense.

My referral was not exactly via internet. Since I am in Honduras and my doctor does not have contacts with US doctors, we did find Dr. Filler's surgery study on line, but my doctor studied it and then referred me to him. She had already decided surgery was necessary and was working with me to investigate options.

Hope everyone is having a relatively good day.
Donna