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Piriformis release surgery, anyone???


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Radam
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PostPosted: 08/04/10 - 12:04    Post subject:
Shirley, I will try to answer your questions.
I am better in that when I get up in the morning I can set down to have my coffee without discomfort and I can read for a while if I want. Before I was so uncomfortable, i.e. burning pain that this was almost impossible. Also, before the surgery, forget getting in the car and traveling for any distance.

The pain before the second surgery was almost as bad as before the first surgery. The awful burning and pain in the legs down to my knees. And it was hard to get the pain under control even with pain and anti-inflammatory meds. Even the Flector patches didn't help much.

I take Lortab and still use the Flector patches. I came off the patches for a while and also stopped taking the Aleve just to see what effect it had on the pain. The Aleve was killing my stomach. The Lortab took care of the pain but I began to worry that since I still had the burning maybe there was inflammation and so I started back on the Aleve and patches again. I took Aleve last night and didn't need pain medication. Before the surgery, this didn't work.

I haven't spoken with Dr. Filler since my 4 week consult. I did talk to Michelle and she prescribed Medrol again and said the nerves were probably flared up from the surgery and to be patient. I didn't get as much relief from the Medrol as I did before although I had relief about a week after finishing it.

The burning does not go down the leg and is confined to the lower butt. I don't get any other pain except the burning. I had a couple of days that I really overworked and had some minor pain in my legs but Aleve took care of that. I don't have muscle spasms and for the most part have only a little soreness when I overdo things.

Sitting is much better now that before the second surgery. I still try not to sit for long periods of time but at least I can read and have some quiet time without laying down. Also riding in the car is much more tolerable now. Before the second surgery I was laying in the back seat when I traveled and my husband did most of the grocery shopping so I wouldn't have to get in the car. I can walk as much as I want and have no pain but again I try to limit what I do because I want to give the nerves a chance to completely heal before I attempt it. I have not started exercising again and only pleasure walk because I want to ease into it slowly. I am anxious to get into weight lifting and fast walking but I've come too far to rush it now. I am back to normal where my work is concerned and have even done work in the yard and have not suffered from it. I go up and down the stairs with ease and it does not hurt now.

My husband says that he can tell such a difference in my demeanor and that my moods have definitely improved. I now laugh and am my old self and can enjoy each day instead of dreading a day filled with pain. Praise God!

I don't know what to tell those of you who are considering a second surgery. It's a big risk because of the cost and travel involved. I think you have to really look at your circumstances and consider the level of pain and decide what is best. I just knew because of the pain level before the second surgery that I had nerves trapped again. It was too much like before the first surgery. Personally, I just couldn't think about going through my life with the degree of pain I had and didn't know any other avenue to take to fix it. Believe me, if I knew of an alternative to going to CA to fix my problem I would pursue it. But, I had exhausted all measures and was again at wits end.

In summary, as long as I can control the burning with minimal meds I will give it more time for the nerves to heal. Hope this helps and please ask again if I haven't addressed everything.

Menzie, hope the headaches go away soon and you get to enjoy your new house and pool. Is your daughter swimming every day? Hope she's enjoying and benefiting from it too.

I've written so much I can't remember all the other posts but hang in there and continue to pursue pain free living!

Rada
scamp
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PostPosted: 08/04/10 - 13:42    Post subject:
Thanks so much Radam. I really appreciate your taking the time to answer my questions. I will reread it tonight when I have more time.

Fancykats. I got your message and will try to answer it today or tonight. Sounds like you have quite a bit of pain but if you have time try to read through the posts on this forum and you will see that some people have had successful surgeries and some haven't. If I send you a private post it may take time to go out. They sometimes don't go out for as much as a week. I could answer your questions on the regular forum and you would get it right away. Whatever you prefer.

There's one thing for sure. The people on this forum understand how painful piriformis syndrome can be and it usually involves other nerves in addition to the sciatic nerve. There are doctors in the East and filmfest (Mary) if you are on the forum, you could probably do a better job at gving Fancykats advice about that.

More later.

Shirley
salmongirl
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PostPosted: 08/07/10 - 13:20    Post subject: UCSF
Fellow Buttwarriors:
I have been trying for about two months to get an evaluation at the UCSF Neurosurgery Dept after reading here that Dr Barbaro performs piriformis release surgery. At first, Dr Barabaro reportedly read my history and referred me to Dr Engstromm for a 'pre-evaluation.' I thought, well-okay, that is their process, so I would comply. But yesterday I got a call that Dr Engstromm has referred me to their Pain management clinic. I interpret this to mean that I have been turned down by the neurosurgery dept for any evaluation, much less any treatment and just shuffled off to a pain clinic. I'm very discouraged. I have no idea what their criteria is, since I was only able to speak to the scheduling staff and they said no reason was given for being turned down by Dr Engstromm. I have had a diagnosis of piriformis syndrome for six years with no pathology noted on my MRI's or nerve conduction tests.
I have read a small handfull of success stories here and at the Yahoo-piriformis support group by Dr Filler. Very few, maybe five or so. I do respect the work he has done to advance technology and treatment of this condition, but I just cannot get over what I read about his practise. I work in a hospital and the follow up that our surgeons provide their patients is incredibly more comprehensive and individualized, even for much more minor procedures.
Anyway, I am totally depressed over this experience and appreciate just being able to vent to others who live in the nightmarish constant pain that is piriformis syndrome. I have considered trying to schedule an MR Neurography through the MRN Institute just to find out what the results would be. It would be a small bit of progress to verify that my nerves are smashed and entrapped by scar tissue, rather than continually told there is nothing wrong with me.
Mary
PS-I accidently posted this as a new thread
Radam
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PostPosted: 08/07/10 - 23:02    Post subject:
Mary, sorry you got the cold shuffle from the neurosurgery department. This doesn't surprise me at all. I went to neurosurgeons prior to going to Filler and they basically told me there was nothing wrong with my back. One even told me the back pain wouldn't kill me but the pain medication would. When I asked one of them why I burned/hurt so bad in the butt area, he told me he didn't know and that I would have to find a diagnostician and have them do further testing. I got the distinct impression they don't want to fool with you unless they can see some clear cut reason on the MRI.
I even had one tell me if I found a reason he could do surgery to come back. I didn't even look back when I left his office.

It's very discouraging to go from doctor to doctor and not get answers. I also had the neurosurgery dept. of Mayo Clinic refuse to give me an appointment stating they couldn't help me. I was so desperate when I found Dr. Filler. I am so much better now than when I had the first surgery. I did have a second surgery and I'm not completely pain free yet but I have my life back. At least Filler is trying to help us and as far as his successes, I have a good friend who had surgery with Filler and she is completely pain free. She doesn't post here because she has her life back and doesn't need the information any longer. I don't know how many cases there are but I would venture a guess that there are more successes than we see here.

I know you are frustrated but hang in there and continue to search. If Filler is not the answer for you, maybe you will find someone else who can help. Take care.
Rada
salmongirl
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PostPosted: 08/08/10 - 21:47    Post subject: UCSF
Rada-
Thank you for your kind words; also to Jimeast who wrote to me. I so appreciate reading about others struggling with PS, as it is unlikely I will meet too many fellow PS'ers in person. That was very interesting to hear that you were turned down at Mayo Clinic-which has such an excellent reputation.
I think one issue that causes confusion is the differing expectations of the term "success" from surgery. I notice some people consider surgery a success despite continued pain, because the level of pain is lower and/or one's functional ability is improved. This seems reasonable. I have most of my functional ability, which gradually returned over a four year period, and can hike and garden although it flares my pain up like the dickens.
Menzie- I hope your daughter is enjoying swimming in our nice summer weather.
Mary
Meg
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PostPosted: 08/11/10 - 17:35    Post subject: Highway robbery
Sue,

I am the one with the sacral near-stimulator which has a lead with 4 conductors that MUST be placed exactly on the sacral nerve before it branches out to many different places, then reunites to the sciatic nerve under the piriformis. The very expensive unit is useless unless it is attached to the very small section of the nerve. The point is if the surgeon can see that nerve to make the exact placement with CT equipment, then why does Filler need all the special hocus pocus to administer a simple set of injections. My pain management Doctor hits the piriformis right on the money every time for $600 to $800. I have three different injections at one time, R SI Joint, R piriformis, R hip bursa. I have had 18 injections in 3 years and never a miss. All three are $2100 which includes facility, injection materials and medicine, it's a package deal. There is no way any doctor could justify that kind of money. The more I hear about his fees, refusal to accept insurance rates and his contract to force full payment above insurance payments is truly disgusting. I talked to my orthopedic surgeon and he said the man is feeding off peoples pain and has no compassion or ethics.

Sorry for the negative on someone who many of you rely on but, I feel very strong about his true motivations.

Meg
towerbr82
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PostPosted: 08/11/10 - 20:46    Post subject:
I completely agree with you Meg. Dr. Filler is really taking advantage of how desperate we are for pain relief. My dad is a credit card processor and he talked to the receptionist there about their processing and I remember my dad telling me that Dr. Filler does over 5 million in card processing a year. And that doesn't include cash and checks that are paid out to him. I know he works hard and is very educated and his services are in high demand but his rates are outrageous. I have over 10,000 in collection debt from him and I am in more pain than before surgery. I also question his ethics and compassion but it is true that some people need big financial incentives to stay motivated. I just hope we find the relief we are looking for without going broke.

Take care,

Brandon
Ohdeal
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PostPosted: 08/15/10 - 11:59    Post subject: piriformis ressection
Hi Everyone,

I have had my surgery July 27 and was fortunate enough to have my partner present and to stay with my friend in LA for a week before returning by plane.

So far the only side affect of the surgery beside the normal surgical pain was muscle spasms in my butt which have recently subsided.

One day post-op I noticed a change in my pain pattern. The nerve pain I have been experiencing for the past three years seemed to dissipate and was replaced with a muscular burning which is a result of the periformis muscle beginning to atrophy as a result of the operation.

Now its been almost 3 weeks post-op and my rehab consists of daily walks from 20 to 30 minutes. I am still having difficultly with stairs due to muscular weakness. I am going to try a few hours of work this coming week however i am reluctant to sit more than 30 minutes at a time.

i am optimistic that my surgery was a success and I will keep you posted on my recovery.

p.s. the only pills I am taking are a muscle relaxant every 8 hours.

If anyone has any specific question pre and post surgery i would be more than happy to share my experiences.

I hope everyone is doing well and coping with their pain, its so important to keep a positive outlook. I certainly cannot say enough about Dr. Filler.

I am hoping hear more from others and their experience with this procedure.
scamp
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PostPosted: 08/17/10 - 16:45    Post subject:
Hi everyone. I have been at a cottage and didn't have my laptop with me. I will post before the week is over.

Sue I am not sure what the difference is between our charges or what he did but mine was $8300 for everything including seeing him and injection and MRN. I paid cash when I was there.

More later.

Shirley
ski1212
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PostPosted: 08/18/10 - 00:04    Post subject:
Hello, I'm new to this site and to be honest i'm not sure how I even came upon it(probably while doing my daily narotic googling). I was diagnosed w/ piriformis syndrome 6 months ago. I'm a 30yr old female, never injured myself (that i'm aware of)but do have scoliosis and na leg length discrepency. In Feb. I worked (waitress) a 15 hr shift and started to experience horrible low back pain that didn't go away. I eventualy realized it was siatica pain when it started shooting down my butt n leg, iced it and rested it for 3 days and it went away. About 3 weeks later it came back and has never left since. I started to see a chiropracter and he treated me for siatica issues. It was while i was seeing the chiro that all of a sudden my symptoms got worse, I no longer could sit and I was in excrutiating pain when I laid. He sent me to a musculor skeletal specialist b/c he didnt know what was wrong, that specialist said it was PS. I have tried a month of medrol steroid, PT for 2 months, lidoderm patches, voltaren, accupuncture. Nothing has worked. I had to quit my job, i live on ibuprofen. I can't stand for very long periods of time, I can only sit for 20 mins at a time on a good day, and i can lay on my right said w/ a pillow in between my laegs for about an hour(my left side is the problem). I miss sleeping, sitting, my life. This has consumed my whole life. The only thing that seems to have somewhat of a +effect is the accupuncture It goes away significantly after treatmentand will progressivly get better for a day or two and then when I almost feel completely better the vicious cycle begins again. Something in my left butt starts to tighten asnd clentch, it cause my whole sacrum area (left n right) to stiffen and get sore. That causes the muscle in my but to spasm and that causes my siatic pain in my leg. Stinging shooting pain in the back of my thigh. Then the next day ,y butt starts burning, i cant sit at all,when I do spasms happen all over my body(legs arms neck hands) my knee cap starts to hurt(weird) and my hip starts to hurt(a weird achy burning acidy kinda feeling). When that goes away my feet(the soles ) start burning. This all starts to slowly dissapate throughout the week and then eventually come back (6 months now). Who do I go see? what kind of doctor? All lower and upper back MRI are good no disc problems nothing. Hip MRI is perfect also. Last doctor I saw (today) who is an ortopedic doc said he can inject my hip w/cortisone. I haven't done this yet b/c the last specialist i was seeing never wante dto do injections b/c he didnt think they would help me. He wanted to put me on nerve pain meds which i opted to not do. Nobody seems to know aboutPS so I dont know professional who to see next. I was thinking about going to a massage therapist. Anybody have any luck with that?Any suggestions on getting relief , docs to see, xrays that would help ??? Ialso saw a neurologist who just wanted me to take baclofen and call him in 3 months and I opted not to do that. He did say that he thought that maybe I injured my piriformis muscle whe I was doing daily injections of progesterone in oil in that upper area for In Vitro Fertilization back in Feb. which is when this all started. Im desperate . HELP!!!!
arav
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PostPosted: 08/18/10 - 11:18    Post subject: Is it piriformis
Hi All,

Sorry for the long post but, I need help....please.

Its great to see a group of people who can understand our pain.
I have been reading all posts from past 3 days and I have read from page 1 to almost page 81 and all the while thinking how similar are my thoughts the thoughts of the people out here in this forum... I need some clarifications to make sure that I have piriformis or something else, please help me.

My Pain started started almost 14 months back in Jun 2009. It was a dull ache deep in the right butt. Initially I ignored it as nothing but it became persistent. It was at its highest in morning but reduced as the day went by and with activities.
If I sit in a squat position and bend my neck then there was this searing/pulling pain in the deep right hip and initially it was only in hip.
Initially I went to a Orthopedic and he suggested that it was coccydynia by seeing an X-ray.

But soon the pain started appearing in my right calf muscle and right ankle and I got nervous I went to a Neuro Physician who asked me take a MRI and said that there was a mild disk bulge at L4-L5 and referred me to Physiotherapy for disk bulge. 10 sessions of physiotherapy(traction, stretching regimen) did not show any improvement. On the contrary it moved into my right foot(down side of the foot, near the pinky of right foot).
Then I consulted a Neuro Surgeon who said that the disk bulge I had was very minimal and not impinging any nerve roots and said that the problem could be by a tight Piriformis. He gave me some pain medication asked me to continue my regular activities with some piriformis stretches.

It was 5 months ago and till now I have no improvements.... Sad

Coming to my question:

As I have read in previous posts in this forum my pain is not debilitating, it is a constant dull pain in my butt(24/7). Even the pain in the foot (sometimes calf) is 24/7. I can sit for an hour before I sense a burning sensation in my butt and I have to get up and wait/walk until I feel confident of sitting back.
It is at its peak in the morning and in squatting position if I bend my neck down with a forward arching back then I feel a intolerable pain/pulling/burning sensation deep in my right butt, nothing on my left.

If I do the squatting test evening then the pain is relatively very low with comparision to pain in morning.
I can walk, run (slowly), play table tennis, stand but if overdo anything I feel twinges of pain in my butt.
I am a good TT player and I am not being able to play to my potential because of this and after reading all the other posts I am afraid that I am heading that way.
I have cried a lot when I am alone thinking about my future.
I was the most active person I knew before this thing happened doing trekkings, hikings, playing but from 1 year it feels like I have lost my life because of this bloody butt pain.

Can any body please tell me if my symptoms are piriformis ?
Sometimes I doubt it because there was no solid evidence on which the nuero surgeon concluded that this was PS. Secondly I have had no pain in back of thigh till now. Its just butt and foot pain.

Can anybody answer it and relieve me of my dilemma?

Wishing all a speedy recovery....

Arav
scamp
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PostPosted: 08/18/10 - 12:41    Post subject:
Hi ski1212 and Arav. I have just read over your posts and took lots of notes as there was lots of informations there. I can't answer all your questions right now just because I don't have time but I will try to get back to you later.

You have come to the right place for answers and support. I have been on this forum for a long time and have learned so much including that I am not alone and am not crazy. Others have this excruciating butt/leg/foot pain too. And they understand how terrible it can be and how it totally changes your life and your identity. Most of us on here have been very active before this pain started.

I will get back to you either this evening or tomorrow morning.

Hang in there and know that there are answers and I do have some suggestions to try before you even consider surgery. It is a last resort.

More later.

Shirley
scamp
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PostPosted: 08/19/10 - 21:04    Post subject: piriformis syndrome
Hello again ski11 and Arav. Sorry it has taken me awhile to get back to you. I know how excited I was when I first went on the forum and got to communicate with others who understood.

First Ski11. Sounds like you have tried lots of strategies to get rid of this terrible pain. I did the same and it can get discouraging when you don't get relief and when some treatments make you worse, It must be pretty bad if you quit your job and I understand that too.I took an early retirement when mine had been going on for about a year. It's god that acupuncture gives you some relief even if not lasting relief. You mentioned sacrum pain. As you may know, the piriformis attaches to the sacrum and it is common to get pain there when you have p.s. That has been one of my most painful areas. And of course it is common to get the spasming which has a chain reaction. If the piriformis goes into spasm then the whole butt reacts and that can spread up the back and down the leg along with the sciatic pain.

You asked what doctor to see. I would suggest a physiatrist. The are medical doctors who specialize in rehabilitation and are quite knowlegeable about piriformis. I initially had a marcaine or lidacaine kind of injection and when that gave me temporary relief I got referred for botox injections. That started in 2004. My doctor was great but he did not have any equipment to do guided injections so some worked and some didn't. They would last about 3-4 months and I would get some relief.

You are right to think about massage. Some people get relief from a kind of massage called ART which is a very deep massage and gets at the piriformis along with other muscles in the butt.

An xray of the pelvic can show if the piriformis is atrophied or hypertrophic and bigger than the good side. Mine was atrophied.

Arav, I am certainly not a doctor and cannot diagnose your problem but some of your sumptoms do sound like piriformis. Squatting is one og the positions that aggravates the piriformis as that position gives an extreme stretch to the p. muscle and often people with p.s. can't tolerate stretching the muscle without getting aggravated. The pain you get in the hip may be because the piriformis attaches on the other sie to the greater trochanter. I always had pain in the hip as well as the sacrum. The sciatic pain can go down into the lower leg and into the outside of the foot. But that can also be caused by sciatica caused by problems in the spine.

I am not sure about your pain being worse in the morning. Mine gets progressively worse as the day progresses. Walking is one of my biggest triggers for setting off the pain. As for getting solid evidence that you have piriformis, it is hard to diagnose and in the past it was only diagnosed by doing different maneuvers which would aggravate.

Dr. Filler is one of the doctors who has access to MR Neurography which is a type of imaging that can show nerves and show the source ot he nerve pain. He invented this technique. But there are now other pain centers who have that capacity. That can give you a definitive diagnosis.

So for both of you, I would suggest trying deep massage (ART) and/or some kind of guided botox injection. Both the massage and the botox may allow the piriformis to relax so that you can do the necessary stretches without causing the p. muscle to go inot spasm and cause the sciatic symptoms. Sometimes that is all that is needed. Surgery is a last resort.

I also suggest that you educate yourself as much as you can about p. syndrome. There is a wealth of information on the internet and in this forum.

I had piriformis for 10 years before I finally decided on surgery after having tried everything and I mean EVERYTHING. Dr. Filler did my surgery. Unfortunately I now have psot surgery scar tissue which is causing nerve pain again and may be going back to Dr. Filler to clean the scar tissue up.

I know this is really long but I tried to get at your questions and assure you that there are ways that you can tackle this problem.

I better clsoe because like you I still can't sit for long. The scar tissue is right on the s. nerve where he removed the piriformis. Too sore to edit.

Good luck to both of you. Don't give up.

Shirley
hils
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PostPosted: 08/20/10 - 18:33    Post subject:
Hollis Potter at Hospital for Special Surgery in NY produces some excellent pelvic MRIs that show all the nerves (its only Filller who specifically calls it MRN) some people on the pudendal forum www.pudendal.info have had some amazing scans with her. The price is about $2000. She is using a 3T machine but it is the sequences of the scanning, the right pelvic coil, the post processing software and the skill of the lady that count rather than the 3T.
take care everyone, Hilary
Radam
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PostPosted: 08/20/10 - 20:35    Post subject:
Hi all, hope everyone is having a good week and look forward to a great weekend. Sorry to hear Arav and Ski1212 are having problems too. I am doing so good now and am almost back to normal. I do have some burning in the evening and Michelle prescribed Neurontin to see if it will calm the nerve pain. I have stopped the Aleve and Flector patches and will see if the Neurontin works. I only occasionally need a pain med and that's usually when I've done too much during the day. I still don't lift heavy objects but am doing most of what I did before the pain began. I am even driving myself to appointments and to the grocery. That's such a big step for me.

Arav, my pain was always worse in the evening. I was o.k. until early afternoon and then the awful burning and hurting began. I think it was due partly to my staying upright and busy the first part of the day. I wonder at your pain beginning when you squat and bend your head. That almost sounds like a disk problem to me. My pain was relieved temporarily when I squatted or stretched my lower back. It never intensified when I made these moves. I honestly don't know if it could be your piriformis or not as nothing except the burning seems consistent with the pain most people on this forum describe. Good luck on your search.

Ski1212 I tried deep massage therapy and trigger point release and didn't get any relief. The massage helped in that my muscles were so tight from fighting the pain that it relaxed me. My massage therapist knew how to treat piriformis syndrome and he told me after 3 visits that he couldn't help me as I just wasn't responding to the treatment. I also went to a chiropractor for years and he was able to help until the awful burning pain started in the lower butt. I was worse when I left his office so I stopped going. Heat helped me a great deal when I layed down. That was the only way I could get comfortable enough to go to sleep. I also slept with a pillow between my legs and that helped a lot. As a matter of fact I still sleep that way. Piriformis surgery has certainly helped me and I am almost back to normal.

Ohdeal I also had muscle spasms after my first surgery but they stopped after the second day. I took muscle relaxers that really helped. Glad to see surgery helped you too.

Shirley, are you still going to have another surgery in the fall? I don't regret having the second surgery and am looking forward to a full recovery.

Menzie hope you and your daughter are enjoying your pool and new house.

Hope everybody has a great weekend.

Rada
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