Piriformis release surgery, discussion and information

Yup, that's the reason to go there. It's $$ at this point, otherwise I would have been there a month ago.

My MD isn't cut happy but would like to make sure my discs are okay, etc. I'm just anticipated waiting another month for another vague test result. At least we'll know that it's not my disc, or is, or whatever. :(

I'm running out of hope.

Julie

Hi everyone,
In Jan 2011 I was on my usual walk (I live in Idaho) and developed a sharp pain in my left gluteal muscles. I thought I pulled something, it was cold. My internist and physical therapist diagnosed a problem with my piriformis, perhaps caused by sitting for long periods on my left foot (i spent 7 years working on two math textbooks). PT didn't help, pain clinic injections in my spine, my SI joint, my hip bursa and a no guidance injection that supposedly was into my piriformis didn't help, Since I had previous back surgery (spondylothesis and two ruptured discs), doctors kept thinking it was my spine. I was taking narcotics to keep from hollering and by April could no longer work. I found a physiatrist in Spokane, he thought i might be myofascial pain. I suffered through brutal massage therapy and dry needling. I had some improvement but it didn't last and I developedmore pain on my lateral and front of my thigh. . He did standard EMG workups of my sciatic nerve, nothing. He was so caring and determined to stay with me. I was reading a lot of literature and he was willing to read what I found. I asked him about botox injections. He called Dr. Loren Fishman in NY who has done a lot of PS research and who told hiim how to do it. (My BCross insurance does not pay for botox injections of any kind.) He decided to use EMG guidance as he did the injections. Although he didn't tell me for a month (because he wanted to find out if the botox worked, which it didn't), he observed abnormal signals from my gluteal nerves, which he confirmed in a followup EMG. In other words, I had nerve damage. I kept reading and found some research by Dr. Kenneth Maravilla at the University Of Washington about nerve imaging. Although many doctors aren't familiar with it, there is a relatively new way to use a standard MRI to image nerves. After my doctor argued with the insurance company, the scan got authorized and I was off to Seattle, right before Christmas 2014. The neurogram showed that I have an anatomic variation where my piriformis muscle on both sides is split and the sciatic nerve passes through the belly of the muscle. Suddenly there was a possible diagnosis (my pain clinic doctor was opposed to all of this, saying that sometimes we just don't know the cause of pain). My physiatrist called Dr. Fishman back and asked where to send me next and without hesitation he said Dr. Aaron Filler in Santa Monica, CA. More referral work and I flew down to California in Feb 2015 for a physical evaluation. I stayed another day and had the diagnostic injections that are MRI guided (a HUGE note of caution: this is very expensive, I think it was about $11,000 total and my insurance denied almost everything, despite having a preautorization and I had to take it to the final level of appeal before they paid for the MRI and most of the other costs. Since Dr. Filler is out of network, I had to pay his fee which is substantially above regular reimbursement). This totally incapacitates your butt. I could only walk with a cane. I was by myself, staying at an airbnb and I managed it. When the lidocaine wore off, I felt the best I had in two years. I forgot what it was like not to hurt. So, with the usual caveats, Dr. Filler suggested surgery which I had in May, as soon as finals were over (I used to teach math). I went to St. John's, not Cedars, I'm not sure why. The surgery was 6 hours and then they keep you for observation until the anesthetic wears off but its technically outpatient, not inpatient, to save costs. I've had back surgery and this is a walk in the park compared to that. I gained my walking strength back fairly quickly but nerves take TIME to heal. Dr. Filler found that the muscle was in spasm and I had significant adhesions throughout for unknown reasons. I eventually had complete remission of the pain in my thigh and on the side of my leg. The intense focal pain right above my piriformis went away but I then had similar pain lower down. I need to stop now but I'll try to write more tomorrow, if people want more information.

Julie:

So sorry to hear about the latest with you. This condition causes SO much frustration on top of pain which just doesn't seem fair AT ALL.

Good luck with the next test and getting closer to coming here. Don't give up.

By the way, eyes rolling over here too :)

I'm sorry but I'm really frustrated with your doctor. I'm sure he is well intentioned, but this is too much. Based on the survey results & 6 years of posts, I thought the SI injection was silly. And for him to insist on a discogram when the SI injection didn't relive the butt pain, shows is disregard or lack of understanding of the role of the piriformis muscle in the SI joint position.

I think you are right - another month, another vague test result. And what if he finds a minor abnomality in a disc? Are you going to let him tell you to postpone a definitive diagnosis by Dr. Filler, a piriformis expert?

I can see why you are losing hope. He has you on a treadmill of tests that are no longer really appropriate for you. This reminds me of another new member who had the disk decompression & her PS got even worse.

I'm sorry, but I really wish you had not postponed your app't with Filler. Filler has technology unavailable to 99.9% of doctors. He is much more likely to find out what is really wrong with you. At this point, I don't think you gain anything but frustration by postponing the trip to Dr. Filler.

I know you have probably changed the app't already. Sorry for being so negative - but I want you to get the right diagnosis and treatment. You have been through so much already. Please don't give up all hope. We are all rooting for you.

I started a reply but it disappeared when I went back into the forum for another look. David I am happy for your moments orwas it hoursof being free from the nerve pain. Bravo. Also sounds like you are doing more and more along with working. We are all plugging for you.

Leesa, so sorry you got put off 2 weeks. That must be very frustrating. Hope the 21st gets here fast. I will be following you closely so keep us posted as you go along.

Julie, you sound very discouragedboth wiht your pain and all the waiting for various tests. And of course there is the ever present $$ as we see these high bills rolling in especially from Cedars Sinai. There is lots of grief when we lose our physical ways of recreation, socializing, and relieving stress. It somehow makes us feel we are no longer the same person we were before and the person we want to be. I went through lots of grief. Don't let it go too far. Try to keep positive, keep talking to the group and your fiancee. I am pulling for you.

Kyl or was it Kym? I was saddened by your story both by all its complications and by the financial worrieswhichnow must be dealt with. You are very brave to have gone through wht you have been through. I understand your need to just keep running through pain. Although not a big athlete I did virtually the same for many years with my workouts, my cycling, all the classes I did which only brought on more pain. It is hard to give up the person we are, a big part of our identity and even our social network. I feel for you. don't let yourself go too far down as I have been there, was put on antidepressants also and suffered a severe depression as a result of not being able to beat this pain. I can only say that I never want to go back there. So be careful, be kind to yourself and get lots of support. Don't completely withdraw.

Donna, what is RF treatment for the SI joint. I had prolotherapy for the SI joint and I don't think it did anything except cause more pain. Everyone seems to talk about the SI joint. I was told my was stable after the prolotherapy but I didn't notice any difference. You seem to be making progress too which gives us all hope.

I had physio last night and she really, really stretchedmy hamstrings and my piriformis and last night I was in so much pain that I didn't get to sleep until 3:00 AM--watched a Ben Stiller movie tocheer me up.

It is getting very late and I am very tired. Bye for now and let's all keep hoping and pushing forward.I think about all of you. Bye for now.

Shirley

Shirley,

Thank you for your post. It touched my heart. I am cutting back a lot this past week on the intensity of my exercise. PS is flared up more than usual these last 4 days. I don't know if I can actually still call it PS since the muscle has been taken out. But the pain is same kind of pain exactly except no sciatica.

I have 2 young children, I know have to get thru this somehow for them. Just sometimes my temper is short with them when their not listening because I am in so much pain. I don't spank but I feel horrible when I raise my voice to them. Normally I would not be this way. I am scared I am turning into someone else. I just need relief fast. I feel for all of you out there. This has been a strain on my marraige, my family, and my friends because I just don't want to take their calls. They (my family) live in another state. Sorry, sitting on ice packs right now and needing to vent.

Julie,

I didn't hear from you today. Was I supposed to call you? Let me know if you still want to talk. I will help with your questions the best I can.

Thanks,
Kym

Yea, it's all in our head. Good grief! Having a good attitude and HOPE is what should be in our heads but the pain is not. People like like this really piss me off and, based on the other posts, you good folks are far more gracious and patient than myself. I'll work on this.

Julie, the first neurosurgeon I went to too one look at my MRI and jumped to lumbar fusion based on a tiny bright spot on one my discs. That conversation did not go well. That neurosurgeon is highly thought of in this area but any doctor that immediately jumps to surgery does not rank highly with me.

Dr. Filler looked at the exact same set of images and said he saw the bright spot but called BS on fusion because he said there was no way it could/would produce the symptoms I was having.

I understand your frustration. I understand everyone's frustration. I understand pain. I've learned that only a person in pain can TRULY understand the plight of another in pain. Please keep your chins up and, no matter what, DO NOT give up hope. Keep fighting, use your heads, do whatever it takes to get all the information you need(if this means Filler, then do this as well), and then act. If you need the discogram, go for it. If your back does not hurt, however, I would be somewhat skeptical. This is my opinion though Julie, you need to do what you think is right for you. You already know this however so forgive my redundancy.

I had a bit of a setback yesterday evening because I push too hard. I started doing some simple core strengthening the day before yesterday and last night my left leg protested vehemently. Significant burning in my left shin and top of foot. Never had pain in these areas so something is changing. Oh well, I called Filler's NP and she said I should not have been doing these exercises as they require tensing the buttocks to make the movements. DUH! For a pretty bright guy, I can be so stupid sometimes. So my punishment is that I have to miss work today and chill out. I feel better this morning but this is so FRUSTRATING. It's been 5 weeks since surgery and it feels like 5 years. Thus I push when I feel better and then get knocked on my rear. DUMB!

Done whining. Keep fighting. Keep your chins up.

To the person who posted about the quick fix pain in our head stuff, please take that stuff somewhere else. Attitude is one thing but imagining this kind of pain is not an answer. Please exploit somewhere else as these good people don't need that kind of stuff and you should be ashamed of yourself.

Mary (aka "Sir" (LOL) and David:

Thanks for saying what I wanted to. A friend of mine actually bought that book for me, I flipped through it and then threw it! I had another friend say to me "just don't think about the pain". I know all of my friends just want me to feel better and they mean well they just don't get it. Another reason why I'm so grateful to have found a forum like this.

David, settle down now!!! NO stretching :)

As for my delayed appointment, I was just whinning as well. I have no business getting down about a delayed appointment when I'm just 15 miles away from Dr. Filler. I'm almost embarrassed that I even complained about it given the fact that some of you have to travel many many miles to get here. Forget that I even said anything.

Shirley, I will continue to post my journey...no doubt about that!

Kym, please, please, please take it easy. I totally understand your need to excercise but please take care of yourself.

Try to have a good one everybody.

Leesa

One more offering of help and I'll leave this discussion alone. Selective hearing is an amazing thing. Did you all not read the part where "mind over matter techniques" did not work for me? Because I, like you, did not give them a chance.

I had been diagnosed and treated by all the same doctors with all the same Xrays and MRI's and by all the same methods you have. By the way, how's that going for you? Exactly.

I am a USTA 4.5 tennis player with maximum repetitive use. In great shape. Wait until you have this for 3 years and your mind will open like a spring flower to ANYONE that can help. Maybe it will be after you do the surgery - hopefully not.

Have you not researched enough to have learned that chronic back pain, Sciatica, TMS, PS, etc. are almost exclusive to Western Civilization? All of those 3rd world workers doing back breaking labor everyday - virtually no back pain. Maybe, just maybe, our western medicine has its hands a bit full on this one? Considering it is the number one cause of missed work in the US? Sounds more like an epidemic.

Specifics? My particular case as treated by a Homeopathic "genius" in India - correlated my personality along with my body type and activity, to retaining gasses in the bladder and abdomen. The gasses pushed continuously on the disks (probably for decades) - eventually herniating, cracking and misalligning the back. This is real pain people. Real injury.

A 10 cent remedy administered once for three consecutive months cured me. Where were the doctor's on that one? I'm trying very hard to open your eyes here.

The corrolation with the mind over matter techniques by Dr. Sarno happens b/c he specifically describes a personality type that responds to his techniques. As can be seen on the 20/20 program, it works for many, many people. He's onto something here. I was diagnosed with that same personality type (by description of traits - different names of course) by a doctor in India using Homeopathy who knows nothing about Sarno. But instead of mind over matter - he applied a remedy which worked a miracle for me.

I can provide names, remedies, case studies all found right there in google for those willing to be healed. We're talking bed ridden suffers. I'm taking a lot of abuse here but I really hate to see you all suffer like this when it doesn't have to be. To see quotes like "I'm afraid I'm incurable" tugs at my heart b/c I have gone through years of depression with this thing and I know you are too.

Why someone would suffer without exhausting every avenue while rolling their eyes at the cure that works - I really just have no explaination. My heart goes out to you.

Best Wishes

Hello to all,

I've spent the better part of two days reading all the entries in this forum and am feeling less than hopeful about my upcoming surgery for PS. I've been dealing with PS for 11 years, though, like all of you, I did not receive the proper diagnosis until last year. And, like all of you, I've been poked and prodded and experimented on by all sorts of doctors who were well meaning but way off base. My favorite was the doctor who thought all my problems were related to the type of shoes I was wearing. He convinced me to throw away all my good shoes and buy butt-ugly orthopedic shoes. Anyway, I'm embarrassed that I consented and obeyed but, like all of you, when you're dealing with this pain every day all day for so many years, you'll do just about anything. Right?

It seems most of you are being treated by Dr. Filler. My surgeon is Dr. Barbaro at UCSF. Early on in the forum there was an individual (PDH) who used Dr. Barbaro. I would love to hear how he's doing but haven't seen an entry from this person since in a long time. Have any of you heard how he/she is doing? I'm interested because I understand that Dr. Filler and Dr. Barbaro use different techniques during surgery so I wanted to compare.

Also, if anyone is interested, I've gotten quite a bit of short term relief using a TENS unit. My greatest discomfort is when I have to sit for longer than 20 minutes (or sometimes less). The TENS unit has gotten me through many plane rides, lots of movies and plays, and allows me to sit during church instead of standing in the back. I've also been known to sleep with it on particularly bad days. Of course it doesn't cure anything but it does give me temporary relief. Just thought I'd pass that on.

I've appreciated all you input on this subject and I identify with you all. I'd love to have my old self back and I'm sure you all feel the same. Don't get me wrong. Life is sweet and in all other areas, I'm happy and healthy. I'm just so tired of the ever-present pain.

So, if anyone knows about PDF or if anyone has heard pros or cons about the way Dr. Barbaro does the surgery as opposed to how Dr. Filler does the surgery, I'd appreciate hearing from you .

Thanks for listening!

Margie

P.S. This note may be a duplicate. I attempted to post earlier today but don't think I was successful!

Margie:

Sorry to hear about your 11 year struggle....I can't imagine. I don't know anything abour Dr. Barbaro but there is another forum for PS and his name is mentioned. I'm not sure if there's detailed discussion about him, I just know he's mentioned there. Never heard anything else from PDH either, sorry. We'd all like to know as much as we can.

Good luck with everything and keep us posted on how it goes with whatever you decide to do. Are you scheduled for surgery with Dr. Barbaro?

Leesa

This is a message for ANYONE WHO HAS HAD OR WILL HAVE SURGERY for Piriformis Syndrome.

Lots of other people are considering having surgery. And they are DESPERATE for LONG TERM information about the surgery results.

So PLEASE, keep coming back to this forum and post updates on your condition for a minimum of one year, preferably two.

In the first few months after surgery you may feel the surgery was a complete success and you may forget about posting here. But what little follow up information I have shows the first six months are great, then the PS pain returns anywhere from 20-100%.

I would like to think that Dr. Filler's long term surgical successes are better than that. But we just don't have the long term follow-up to know. That is why I am begging you to tell us how you feel one year after surgery. Thanks.

Leesa,

I do not have my surgery date yet. I'm meeting with Dr. Barbaro next week.

Is your appt. still on the 21st? I'm anxious to hear how it goes. Keep us posted. I'll be thinking good thoughts for you!

Margie

Filmfest,

That's discouraging. I hope Dr. Filler's long term success rate is better as well. His formal outcome study seems to indicate that but, in my case, we'll have to see. My 6 weeks have been okay but up and down. The down parts, which I'm working through the end of right now, are pretty discouraging. This only applies to my left side which had the most work done on it. My right side gives me little, if any, trouble.

What happens is that I start feeling very good and then do too much. That's my challenge, to even myself out and just be patient. Patience is not my strength, at least when it is directed at myself. I'm learning. Filler said 4-5 months for a nerve to heal. I'm at 6 weeks so my outcome is obviously premature. It feels like 6 years though. It really does.

I will be on here to keep people updated for a long time. I too wish others would as well.

David

Filmfest,

Your post stimulated quite a bit of thought regarding the re-occurence of the symptoms. I wonder if the survey tends to skew the true numbers. In other words, I wonder if the true number of re-occurrences is pretty low versus the total number of excellent outcomes because the less than stellar outcome folks are the only ones reporting in.

Please don't misinterpret my comments as criticism, I just know that it would be natural for people who have the surgery and who feel great to be less likely to stay in touch. They would tend to move on with their lives. I don't know if this is the correct explanation or not but it does seem plausible. Dr. Filler's outcome study went out to 8 years and he did report re-occurrences, just not to the extent that your post could be interpreted to imply(and I do understand that may represent a misunderstanding on my part).

Oh well, that's why it's so important that people remain in touch. Good or bad, please stay in touch occasionally so that those of us who are still fighting or recovering can get the truest picture of life post surgery and have the highest degree of hope fighting or getting ready for surgery or treatment.

Just some thoughts. Welcome your correction/feedback as necessary.