Piriformis release surgery, discussion and information

Margie,

Yes, my appointment is on the 21st. I will report back on what's going on. What date do you meet with Barbaro?

Have a good one.

Leesa

Margie,

Yes, there are a lot of entries there! There is a search tool, type in "Barbaro" and maybe you'll just get those entries that discuss him.

Take care.

David,

I am painfully aware of the problems associated with a small sample. That is why I begging people to stay in touch. On the other board, no one with surgery stayed in touch. I've tried to track people down people, but found few. People change computers & mailboxes.

I really would like to think that this surgery is better. But without long term, independent follow-up, we just don't know. A doctor's definition of success is often different than the patient's. (One patient was told by Pain Mgmt team that a 10% reduction in pain from a BOTOX injection was considered success - that's not my definition of success!)

ANYONE WHO HAS SURGERY, please send me your email address to my mailbox here, so I can follow - up with you for a couple of years. PLEASE!

Also, I don't want you to be overly pessimistic about what your long term outcome will be. I have data on 4 people who had surgery 4 years ago or more. Only one got not no long term relief. That surgery was done by a doctor who had little experience doing the Piriformis surgery. But the first few months, this patient thought her problem had been solved. Then the pain returned.

The others had permanent pain reduction ranging from 50 - 80%. They are very happy will the surgical results.

Here's hoping Filler's surgery is better.

I hear you filmfest. I agree, it would be so helpful if those of us who have had the surgery would share the experience long term. I would love to know how a large census of people felt 6 weeks post surgery. The last few days have been low days and I would love to know if it is typical for there to be highs and lows this far out.

HI There
I found your post most helpful. I have been suffering with PS for six years. What a struggle l have done anything and everything to try and aleviate this pain. I was a very fit active 54 year old women l had to retire l could not do my job. Now l am 61 years old and l finally got a Dr. who found the problem. I was first given 150 units of Botox into the peirformis. With in a month pain was 80% gone. That worked for a couple three months and now pain is back with a vengeance. I am booked for surgery Jan.30 . Never thought l would be excited for surgery without this my life is not worth living. Wish me luck. V

Some of my doctors thought it might be piriformis syndrome (but it is so rare! quit looking for causes for your pain and just learn to deal with it!) but they were unaware of any treatments after PT and they didn't know about neurograms, either. I've had two surgeries by Dr. Filler. He does about a two inch incision and uses a special microscope to do the surgery, gradually working down through the layers and then removing what needs to be removed. A neurogram showed that I had the anatomic variation where the sciatic nerve passes through the piriformis. When he opened me up, he found a lot of fibrous bands that were wrapped around the nerve as well as the superior gluteal nerve (causing pain down the side of my hip and down the front of my leg.) The biggest issue with the surgery that I know about is that scar tissue can develop and that causes problems in itself, which is what I've been dealing with, we think.

Filmfest,

What's your email for creating a database?

Laura

Mary,

If and when I have this surgery I will keep up, no doubt. If anything, I want to provide info to others who are considering this because I, myself, have scoured the internet for stories and, like you, have come up with little besides what I have found on 3 forums.


And update: I did reschedule. I'm either heading out for an appointment on the 4th or 11th. I may or may not have the discogram between then...and I really am not to chipper about having it done.

I am very, very concerned about the severity of my SI pain. It came on about 4 or 5 months after the PS started and it is quite bad and getting increasingly worse as time passes. I do not know if the PS surgery will help this pain, and I am quite concerned that I will be left with severe SI pain afterward. It does accompany low back pain in the sense that my paraspinal muscles on my right side have been spasmed and so tight for the past 6 months it feels like they are going to rip off my iliac crest. The tissue around my SI hurts as well. My only option, thus far, with my SI is fusion and I certainly don't want that. Also, I know that if I fuse my SI, the PS will remain, but I am VERY concerned that if we treat the PS, I will still be left with this SI pain.

I have no clue if it's "in" or "out" or whatever. I've been told that the joint pain is due to it being "out" or subluxated however no one has ever been able to get back in (that is, assuming that it's not in place already). It's not hypermobile as far as I know, but I wonder if you got all the muscles around my hip and pelvis to just relax it would move. This is a huge unknown for me and a big concern. All we know at this point is that when the joint was numbed, the pain went down. It feels like my right SI has simply failed. It can not take a decent load beyond what I do at home. Still, I have also read the the piriformis originates pretty darn near or at the anterior portion of the sacroiliac joint capsule. So, SI and piriformis are so closely related, it's a hard, hard call.

I am hoping that Dr. Filler can offer some insight as to my SI problem.

Still in shock that I am even like this...thinking about who I used to be a year ago and what I am like now. I just can't think that way anymore...I just have to focus on how to get better.

Donna, when you saw Filler did he seem like he did believe in SI pain? I've run across a few doctors who don't even believe that the SI can hurt. I certainly hope Dr. Filler does consider this a pain generator because I would value his advice and insight on this.

David, I hope that this down time is followed by a really big up!

Take care,
Julie

David - Sorry, I don't have any information about how people feel at 6 weeks post-op.

Julie - The SI pain will continue as long as the bones are in the wrong place. I don't know if PS surgery would help. Theoretically, if the piriformis relaxes as a result of surgery, your pelvis could be rebalanced manually. What worries me is that PT got the pelvis stuck in the first place & no one can get you unstuck.

Please don't consider an SI fusion. I have only read about their failures.

By the way, my PT today said that leg pain is not always present in Piriformis Syndrome. So even without the leg pain, you still meet the criteria for being diagnosed with Piriformis Syndrome.

Life brings a lot of unwelcome changes. One of the big challenges is to adapt emotionally. You may not be able to return to your mountain climbing youth, but eventually, you will adapt to a different life. Do not despair over what was or what will be. You will get through this and move on to a different stage of your life. This has always been inevitable, whether or not you developed this particular physical problem. Life does go on. It frequently drags us along - kicking & screaming.

Hang on, Mary

Hi, again, to everyone,
I have just read the last couple of weeks of posts, and would like to write a more detailed account of my experiences, for others experiencing piriformis syndrome and considering surgical relief.
My car was broadsided , I received a back fracture, along with severe lumbar sacral pain, left hip pain, severe left buttock pain, and bilateral numbness and tingling. Subsequent MRIs were negative.
I received conservative care from an orthopedic surgeon; also physical therapy, chiropracter (one doctor worked specifically with nerve issues, after my diagnosis with piriformis syndrome); myofacial release; acupuncture, etc. Anything and everything that we could think of.
I still was unable to sit for longer than 15 minutes without severe pain; the left buttocks would also spasm severely and I would have shooting pain down the left leg. (The doctors actually called me 'buttless' because my buttock muscles atrophied so severely.) Eventually, the road led me to a MR Neurography by Dr. Filler, and a positive diagnosis for piriformis syndrome, and I underwent the pirifromis release surgery two years after the accident (two year anniversary!!).
Two days after my release from the hospital, I had to again be hospitalized for post-op atelectasis, as my lungs would not fill up with air. The doctors theorized that since the surgery took place in the prone position, and took longer than expected (4 hours instead of 2 1/2), that my lungs had problems filling. I was in a hospital close to home, as it was an emergency, so Dr. Filler did not treat me at the hospital.
Post op, I was barely able to put pressure on my left leg to walk for about 4 months, and still had to use a cane. (I still do! I did not need one pre-op.) This pain was much more severe than pre-op, and different. The spasm in the left buttocks subsided, (as the piriformis muscle could no longer spasm on the nerve) and the shooting burning pain down the back of the leg ceased. However, it was replaced with severe localized pain in the left buttocks at the point of the incision (which still exists, to which I received periodic trigger-poiont injections), severe pain down the lateral part of the leg (which didn't exist pre-op), and numbness - I still feel like I could stick a pin in the lateral calf area and I wouldn't feel it. I am still unable to sit for any length of time, nor walk more than a mile without a cane, and the onset of severe pain after that type of exercise is usually a couple of hours. I have a Fentanyl patch 25 mcgs on continuously, and use percocet, 1/2 usually about 3-4 times a week, when extra pain is brought on from any extra activity. I was an ICU RN prior to the accident, and continue to be disabled at this point and living on social security disability.
More specifics: About 4 weeks after the surgery, I quit taking the nerve relaxer (Soma) for one night; the buttocks spasmed so badly that literally all I could do was scream at the top of lungs, roll on the ground, until I almost passed out and the cramping subsided (so if anyone else has the surgery, please keep taking the soma for longer!)
I continued to be treated with lortabs after surgery. 3 - 4 months post op, I honestly almost lost my mind because the inability to sleep through the night, by the ups and downs of severe pain. My family doctor put me on a Fentanyl patch at that point and it was a God-send, as it helped euqlize the pain and allowed me to sleep finally. I am not sure why Dr. Filler's office didn't want to change my pain meds; honestly, it saved my sanity.
It was at this point that Dr. Filler gave me another injection; it still bothers me that I wasn't aware of the Pain Center at that point, and that they could have given me an injection and have it covered by insurance. Dr. Filler advised me to go there after I showed no more improvement. I don't know if he dropped me or I dropped him. I had to pay $125 for each appointment, to travel there (45 min. drive) was excrutiatingly painful, and I honestly believe I was a severe detriment to his office sitting there in the waiting room in such severe pain. The site of me would have scared me half to death if I had witnessed it before I went to surgery.
In Dr. Filler's favor, I believe his diagnosis was correct, or at least partially so (the lumbar sacral pain may have a different origin, although MRIs are negative); although I had paid the majority of the surgery and other costs, I continue to pay Dr. Filler's office on a monthly basis, and will continue to do so. I am grateful to his office to working out this payment plan with me.
In September that year I was also diagnosed with breast cancer, and have just completed the last breast surgery (five total), and have been done with chemo for six months. My body is finally regaining it's strength, but physical activities are again complicated because of the left leg and lower back pain.
Cedar's Sinai Pain Center (recommended by Dr. Filler) have been a life-saver; one of the pain specialists sees me every month; I have had bilateral radio-frequency ablations, many trigger point injections, a couple of epidurals, all of which has kept me sane through the cancer treatment. An injection of glucosimine in the left hip actually took away that pain, for the first time since the accident (they are on the cutting edge of research, which gives me hope for future treatments).
I am thrilled to have all-around basic health again; I go to a very 'low impact' yoga once a week (it's meant for pregnant women, and works great for me). And walking (usually with a cane).
The answer to the dilemma of piriformis treatment remains a question. I am happy to hear that some people have had better outcomes from the surgery than I experienced. Surgery is definitely the last resort! I had such high hopes of returning to work, etc. I guess life doesn't always work how we plan.
I have also read Dr. Sarno's books, also "Biology of Belief" by Bruce Lipton, and believe that our physical states are very interwoven with our emotional states (psychoneuroimmunology), and prior to all this my personality fit the profile of both a back pain and a breast cancer personality very closely. (wanting to be perfect, worrier, holding in emotions). Needless to say, I have changed my attitude about a lot of things, I do breathing exercises everyday, and mellow out my reactions to things, am not as much of a perfectionist, and am very happy to be alive, not so serious. I accept the pain as part of my life now, and do my best to keep it under control. I believe the answer to all of health lies somewhere in the balance between the physical body, the spirit, and the mind/emotions. And treatment also lies somewhere in the middle between the medical-surgical world and the mind-immune-emotional world. I would be thrilled to be pain-free, and am happy to be able to take care of myself and find joy in life.
I am grateful to Dr. Filler, although I believe I was misled by the results of the study, and the post-surgical injections. Maybe I was being too optimistic, too hopeful, too anxious to get back to work and a more 'normal' world. If I was to choose it again knowing what I know now, I doubt that I would do the surgery because I barely survived it, physically and emotionally. Maybe the outcome was more difficult with me due to the underlying breast cancer. Who knows?
All in all, I did learn a lot, and I am much more tolerant to pain, both in my body and that experienced by others.
I wish all of you the very best, and relief or at least tolerance to the pains; reading this forum has really helped me digest the last two years; I guess it makes one feel less 'alone.'
Thanks and good luck to all!!!
Nerve Pain

Nerve Pain,

What did Dr. Filler speculate as to why you had continued pain?
What did you have RFA on (facets or SI?)
What did they determine to be wrong with your hip?

I admire your strength to continue through this. With a breast cancer diagnosis on top of all of this, you are very strong, very brave.

Take care,
Julie

Hello Margie,

I too am seeing Dr. Barbaro and have also been attempting to contact anyone who has experienced the surgery he performs. My neurogram did not show anything, but I was told that that is not unusual. My next procedure is a CT guided injection this week...I've been told it is both diagnostic and interventional, I'm hoping to clarify things prior to the procedure.

I have a family member who is a 3rd year medical student, he puts a lot of weight in Dr. Barbaro's credibility....it is difficult, my husband wants to know if there is a piriformis syndrome spouse support group?

Let me know what you think....thanks, Sadie

Hi Sadie,

My neurogram was also inconclusive. I had the CT injection Dec. 12 and it gave me an amazing 3 hours of no pain in my left leg! It was a glorious feeling! My follow up appt. with Dr. Barbaro is next Wednesday where I'm assuming he's going to discuss surgery as a next step. I'm assuming this because he told me in our last visit that if the injection provided relief, even briefly, then that was an indication that the surgery would benefit me. I opted to have the injection without any anesthesia. They were offering a "twilight" anesthesia but, because my body doesn't react well to anesthesia, I opted to just clench my teeth. There were one or two moments - very brief - where I thought I might punch someone. But they were over with very quickly.

I do not know exactly how Dr. Filler does the surgery but Dr. Barbaro told me that he makes a larger incision than other doctors and then, instead of cutting through the glut muscle, he moves it out of the way temporarily so that he can get to the piriformis and the nerve. He said he actually uses his strongest resident to grab the glut and pull it out of the way and hold it there throughout the surgery. Yikes! But I suppose I like the idea of my glut being moved out of the way instead of being cut through.

I'll let you know what else I find out on Wednesday.

Margie

Margie,

My husband and I will travel on Monday for my Tuesday appt., just the thought of not hurting for even several hours sounds soooo good.

Do you reside in the S.F. area, or do you also have to travel? I wish you the best and am very interested in what you learn.

Thanks, Sadie

Sadie,

I do live in the Bay Area - Benicia. My daughter drove me to my CT injection appt. because my husband's schedule wouldn't allow him to accompany me. I'll warn you that your leg is going to behave very oddly until the next day. At least mine did! It was comical trying to walk! You have feeling in the leg but no control over it. It was good for several hours of laughs!

Good luck and I look forward to hearing from you after your proceedure.

Margie