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Hello all,
I have been suffering for a year now. From what I understand of nerve healing, it does take a VERY long time for nerve damage to heal. I got to experience this myself when I had a nerve nicked in my mouth during a dental procedure when I was 12. For at least two years afterward, while the nerve healed itself, the pain was excruciating. I could not even touch that part of my lip and mouth and suffered from the painful tingliness that often accompanies nerve healing. I still don't have complete feeling on that side and I'm 27 now, but the pain finally lessened. I still get that pain if I do something stupid like bite my lip or crunch a chip wrong. I think that most of us will just be happy to get rid of that constant and unending nerve pain, but even after the nerve is no longer compressed, it will take time and pain for that nerve to have any kind of true healing. Unfortunately, this just means that there is no miracle cure or easy fix. I myself will get surgery as soon as I am financially able, since the PT has done nothing for me. But the PT DOES help a lot of people so I can't discount it. I think you have to find what works for you. Unfortunately some people do try to benefit from those in pain (both from the medical and PT communites). We have to be smart. If it hurts you worse than the normal amount of pain you deal with on a daily basis, then it's probably not for you. Of course, a small temporary increase in pain is expected in any healing process.
But I digress....a lot.
I hope that everyone here eventually finds some kind of relief, temporary or otherwise. I'm still in search of mine.
Take care all,
Kayti

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Ronnyjotten, you are misquoting me and I'm not going to get into a shouting match with you because you like to argue. I've worked with too many people who have gotten better for me to have doubts about what I teach.

I did not say that a person is doing anything with the hip flexors when you do the stretch leaning backward, you are only stretching the iliopsoas. When you kneel on one knee and lean back you are doing the same thing, only closer to the floor. To stretch the hip flexors you need to move in the opposite direction (left leg toward the right, right leg toward the left). Primarily I teach people to find the trigger points that are shortening the length of the muscles, putting a strain on the insertion point at the joint.

I stand by what I teach, I'm fine about you not attending one of my workshops. Good luck at what you choose to do to help yourself, I'll continue doing what I do.

Julie

Julie
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ok Julie, "I did not say that a person is doing anything with the hip flexors when you do the stretch leaning backwards, you are only stretching the iliopsoas" Could you please do me a favor and perhaps read your own posts? That statement is completely ridiculous. The iliopsoas is a hip flexor. So in essence you are saying that you are not doing anything with the hip flexors, just stretching the iliopsoas, which is a hip flexor!!!!! Make sense for a change why don't you.
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I wanted to give an update on my experience with Dr. Filler. I had an appointment with him two weeks ago and was able to schedule bilateral piriformis and obturator internus release for the next day. Several nerves needed to be released and the piriformis muscle was deeply indented into the sciatic nerve inside the sciatic notch.

I made the return flight (7 hours) 4 days later and was in much less pain on the return flight than I was on the first one.

I certainly can't speak for anyone else, nor can I speak long term, but so for this is the best thing I have done. I went from between level 6 and 9 pain to around a 1-2! Dr. Filler wants me to continue to take pain meds for a few months to help with nerve recovery, but I have to try to remember them, since the pain is so little now. In the two weeks post surgery, I'm not supposed to sit or stand for more than 20 minutes at a time to give the incision site time to heal, but other than that no restrictions. My gait is normal and my husband claims he has a new wife! I feel like I have my life back and I would encourage others to pursue this option as well.

As for insurance, after working with our company for two months, they agreed to pay both Dr. Filler and Cedars-Sinai at participating physician/hospital rates since there are so few surgeons who do this surgery.

I'd be happy to answer questions that anyone else has.
Hermana Ana

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Glad to hear that you are recovering well thus far. I would greatly appreciate hearing from you as the months pass, to determine the true long range success of your operation. I would also be interested in how you developed this condition, why you needed a bilateral procedure, and what your symptoms were prior to the surgeries. I am considering going to Rockhardt Hospital in Bangalore, India, as it is much more affordable, but Dr. Filler seems to be the most qualfied for the job. It's 70 grand in the US, and 7 grand in India however. Please keep me posted.
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Happy to hear that someone is getting some relief! And thanks for providing us a ray of hope in this regard. Good luck in your further recovery.
Kayti
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Been diagnosised with piriformis syndrome after a nasty pelvic incident and have not been the same since. NO one really understands the nagging burning pain unless you suffer yourself from it. I recently read articles about surgery at the INM and Dr. Fillers procedure but insurance will not cover and have not received a quote as to the full cost and was wondering if those of you whom have received the surgery have this information.

I have tried everything as well injections, therapy, massage, sacro wedgey, acupuncture and numerous medications (most were narcotics and did not like the effects). The only medication that i have continued to take which does help manage the pain on certain days is ultram. It is a non-narcotic therefore the longterm effects are not as detirmential but I would like to have another child and cannot take medication if pregnant. I have tried to go without medication but pain is too much. I also received a pinched nerve between my C6 and C7 vertebrates and tore my shoulder in a car accident one year after pelvic injury. so the whole left side of my body suffers from nerve pain. I did have shoulder surgery and things are better but the neck did not help and told i have an impairment now.

Would appreciate any information if possible.
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In reply to those who wanted more details about my symptoms surgery cost etc:

I'm not sure how I developed piriformis syndrome. There was never an accident. Two years ago my right hip started hurting a little. Two months later it hurt enough that I was unable to sleep at night. Then I broke my left ankle and putting the extra pressure on the right side really made it worse. A few months later, surgery on the left knee again put me on crutches and increased the pain. Somewhere along the way the left side started huring too. My doctors think that because I over pronate badly and have scoliosis and an elevated hip, all of those factors have worked together over the years and after I reached the magic age of 40, all the years of being off balanced, I started feeling the damage that was constantly being done. Unfortunately not much can be done for all the other structural abnormalities, so I can only hope and pray that more damage won't be done elsewhere in the future.

My symptoms were classic piriformis syndrome symptoms: burning pain in the butt, radiating down the lateral thigh, but not past the knee, some numbness in the middle toes. The pain was worse after prolonged sitting, but also after prolonged standing or walking. Injections gave short term minimal relief, botox helped some, although I had to go up to 150 units to get the relief, PT did almost nothing, drugs did little. Both sides were equally as bad, which is why I had the bilateral surgery.

Two weeks after surgery I still feel pretty tired, as a result of the anesthesia, but I'm easing back into normal life. Sitting for a long period of time causes pain at the incision site. But it is such a relief to lie down at night and not feel pain. I'll be talking with Dr. Filler's office this week for a 2 wk phone check up

Costs: Aside from the cost of airfare, car rental ($20 per day)and motel ( $90 per day near airport and 30 minutes from Dr. Filler)
,
Dr Filler: Initial consult $500....with a $150 deposit and the rest to be billed after insurance is processed

Surgery: Just under $20,000 for both sides, with a deposit of $5500 and the rest to be charged after insurance

Cedars Sinai: So far my account has been billed $10,000, but I'm sure that's not the end of it. There will still be all the "extras"

Something that I hadn't thought to include was the pre-op physical exam. Dr. Filler's office set it up for me, and since they're part of our insurance plan, I just had to pay the co-pay and we'll see the rest later. It will be fairly costly with blood tests, chest x-ray etc

Imaging: Again, since our insurance will be paying, I haven't seen the bill yet.

I had already had CT guided injections before my appointment with Dr. Filler so he didn't ask me to go through those again.

Hope all this helps everyone. I wish you the best as you seek the best options to get pain relief.

Blessings,
Donna

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I also went to see Dr. Filler about three weeks ago. I have bilateral issues in both legs and the left is farworse. Had the MRN and the images showed irritated nerves on both sides and sure enough, the left looked more irritated.

He did the MRI guided injections. I had relief in the left leg for one day and little or no relief in the right leg. My pain is soreness in the buttocks and what feels like pressure behind each knee and someimes burning in both feet and sometimes pain on the inside of each knee.

What I've also noticed is pain(sharp) in/around the greater trochanter in each leg. I'm wondering if I don't have simple hip bursitis which has irritated the piriformis. Does anyone know if this is physiologically possible?

Another interesting tidbit is that I am currently on an oral steroid pack. I'm actually receiving far more relief from the oral steroid than that provided by the injections. How can that possibly be the case?

Also, I have been sitting on a heat pad. This brought the pain level down to a point that I went from 4-5 Tramadol(Ultram) a day down to 2-3.

I'm schedule for surgery with Dr. Filler in the middle of November. However, I'm very, very reluctant given the outcome of injections verus the relief from the oral steroid and heat pad. In other words, I know I have piriformis syndrome but I don't know what is causing it. I'm wondering if a simple steroid injection in the trochanter bursa would settle this whole issue down. Bottom line: I've have many, many questions for Dr. Filler and I may very well postpone until I can get some answers.

I would love to hear any feedback. I'm also curious if anyone has symptoms similar to mine. Mine is more like soreness in the butt and the pain in the legs is almost like if you had a sunburn and wore jeans. That is the type of feeling plus the pressure behind the knees and the burining in the feet from time to time.

Thanks in advance.
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I just received a flouro guided injection into the piriformis today (not with Dr Filler BTW; here at a military hospital.) I have had a blind injection before, with little to no relief, but not too much pain during the procedure either. Today was hell. They had to twitch the sciatic nerve so they could see where to put the medicine. It hurt a LOT more than they said that it would. I'm in a tremendous amount of pain right now and they didn't give me anything for afterward. Anybody else have to go through this? When will it stop hurting so darn much??
Hope everyone is having a low pain day!
Kayti
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Hi, I just read your post after I posted mine. I do sometimes feel as if the skin around my legs hurts quite a bit, especially when I get goosebumps. Who ever heard of painful goosebumps? I also get a lot of pain at the greater trochanter area of my hip. When I first started getting pain, they diagnosed it as bursitis. I have read (and I wish I could remember where) of cases that start out as bursitis (or at least diagnosed as such) and progress onto piriformis syndrome. I continue to have most of my pain in the butt, the back of the thigh and the back of the knee. It seems to skip my calf most of the time and give me pain in the heel, like I have a continuous stone bruise, occasionally stepping on a big nail. Yuck. Hang in there and I hope you start to feel better soon.
Kayti
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Elliot when you say the recovery is rough, what do you mean exactly. I had the surgery on May 11 and I'm still in a lot of pain
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Yes, my pain tends to skip the calf as well. I read somewhere that pririformis syndrome is really piriformis tendonitis. I also read that hip bursitis and piriformis tend to go hand in hand. If you don't treat both, you will never conquer either.

That's why I really want to talk to Dr. Filler. He sent a paper he authored before my appointent with him. I need to go back and read the thing again but I would swear that the article stated that roughly 7% of his patients actually had hip bursitis and treatment of the bursitis cleared the piriformis issue.

In either case, I am very tempted to have my greater trochanter bursa injected just to see. This oral steroid pack has worked so well that I'm completely mystified why a direct MRI guided injection of steroid into the piriformis did not work nearly so well as a systemic oral steroid. It tends to make one believe that we are focused on treatment of the wrong issue.

Very sorry about your injection pain. That was another reason I went to Dr. Filler because of the accuracy of the open MRI injection. I am very fortunate that I had the resources to make that trip but I'm afraid I left with more questions than before I got there.

I just have to believe there is a simple mechanical explanation to all of this. This comment applies to th bursitis issue and the pirformis issue. These are symptoms. What I want to know is what is the cause of the symptom. I'm 47 years old, was a highly competitive athlete from a very young age through college and then, boom, my life comes to a grinding halt because of some syndrome. I'm frustrated and tired.
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You had both side done with Dr. Filler. I also have pain in both legs. You elected to do both sides at the same time. Do you regret having both sides done at the same time? Dr. Filler's office told me I needed to give this issue a great deal of thought. Plane flights, sleeping, pain in both legs insteado f just one, etc..

Thoughts? Experience? Advice?

Thanks very much.
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Okay, I'm jumping in here, too. My symptoms started out as burning searing butt pain around the greater trochanter (bilateral) that wrapped around my TFL. Burning, raw, inflammed type pain. I, too, was diagnosed with bursitis and hip abductor tendonitis. I did the steroids, blind shot into both butt cheeks (trigger point i guess) and have PT'd my heart out. ALSO have been through 7 rounds of prolotherapy. My symptoms are 24/7 and started when I was working in an ICU and spent 12 hours on my feet. I'm 28 and a rock climber/endurance athlete, so I was willing to accept the "tendonitis/bursitis" diagnosis...but I wasn't getting better AT ALL. And I, too, have kept saying to everyone, "you know, SOMETHING has to be causing this..." and I have kept trying to find the root cause to this horrible pain.

Now, here's a twist to the whole story: my PT thought that this all had to do with my SI joint, that one side wasn't moving as well as the other so we started trying to "mobilize" my joint. We got it to clunk twice, the second time sent me into spasms and for some reason, 5 days later, my right SI started burning (like acid leaking out of it) and now, 4 months later, I have the piriformis pain PLUS all the muscles on the right side of my body (ribcage to knee) are pulled so tight they feel like they are going to rip off the bone...and my SI burns. Anterior right thigh burns and spasms, sometimes the left will too but not as bad. It's god awful.

I'm grasping at straws at this point but I really think that this has to do with the SI joint. I think that for whatever reason (weak core, lax ligaments, birth defect, whatever) the piriformis/glute medius and the like go psycho. I don't know what is wrong with SI joint, all the PT's say it's mobile, looks good, etc but it feels wrong. And when the PS started and I did chiro, all the pelvic manipulations actually increased the pain. I never have had low back pain, per se, but I do now and for the life of me I think it' my SI joint. My SI wasn't symptomatic at first when the PS/bursitis/tendonitis came in...but it is now and it's pretty profound.

Also, my symptoms are totally exacerbated by sitting and standing. When I stand my butt goes into this clench mode and I can't bear weight on either hip, etc. Sitting increases the burning greater troncanter pain, too.

Sorry for the length of this...but I am totally in the same boat with all of you. I'm going into month 9 with this problem and zero improvement despite considerable effort (and rest!) on my part. In fact, I seem to be be getting worse. I think the SI causes the PS, but that's just my latest theory and the only one that makes sense.

I have yet to receive an accurate diagnosis...or have been able to locate my pain generator(s). I'm still on that quest.

Now how to get better, I have no clue...
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