I've been going through this for years, and can't believe I finally found a group of people who know what I am dealing with. mine started from a very long ride in a car, the entire length of California. after a few hours, I realized that I could no longer sit at all on my left rump. At some point, we stopped and bought me a pillow with a hole in the middle of it. The entire vacation was miserable because of this, and then we had to drive all of the way home again. The doctors were unsympathetic to say the least. I learned how to sit on the crack between two chairs, getting up frequently and just staying off of it as much as I could. After about three months, the pain was getting less, or else I was getting used to adapting, I'm not sure which. I found one car that has a different configuration in its drivers seat pad, and if I am careful, I can drive for a couple of hours at a time with only minimal pain – – leaning to the right to stay off of the left point of pain. I had no name for any of this.
I would say by chance, I developed some vertebra and disk problems in my neck, and so my doctor sent me to a really good physiotherapist for that. she was able to help me, and so I started telling her about my problems with sitting. After an exam, and further authorization from my doctor for the sake of insurance, my physiotherapist finally said to me one day "piriformis muscle," which meant nothing to me except that she had a slightly helpless, sad look on her face when she used that term. She did teach me a few simple stretching exercises, which may or may not be helping. The story goes on from here, because I also had lower back problems, had an MRI, had a couple rods put in my back to fuse two of the vertebra; that was all six weeks ago and I have had a complete recovery from the back pain and no problems with the fusing. But here I am, back to the problems with the piriformis muscle. If anything, it got worse due to all of the time I spent not exercising that area because I was letting my back heal. now, armed with all of the knowledge that you fellow sufferers have given me through this blog, I will be going back to my excellent neurosurgeon on Tuesday, and see if he thinks anything more can be done. At times, I say my pain is a 12 on the scale of 1 to 10. but I have learned so many coping skills over the past many years, that I can usually get past that. Part of my problem right now is that I am not allowed to take any NSAIDS because of the theory that they interfere with the bone growth that is necessary for fusing the spine. I think that if I can just get my anti-inflammatory meds back, they may help me get back to enduring the pain in the rear end. The hydrocodone and Valium which I was given for the post-op from my back surgery did absolutely nothing to help me with the piriformis syndrome, so I quit them and I am on no medication at all right now… Waiting for my permission to start up the anti-inflammatories again. The only hope that I can give all of you is that there do seem to be ways of minimizing the pain through exercise, coping skills, patience and the NSAIDS. I do not yet have any opinion about whether surgical intervention would be worth it. God bless to all of you.
Debbie, I was jsut going t turn my computer off for the night and read your message. Welcome to our group of great people. I have also just made an appointment wiht Dr. Filler. I too have facet joint problems, spondylolisthesis at L4-5 which is when a facet jiont wears out andc causes the vertrbra above to slip down on the one below. It may be part of my pain problem but I like you have the most severe pain in the butt and down the leg/foot. I have had this for about 8-9 years.
I am so sorry to hear about your parents death on top of all this pain. You have been through a vey rough time. You will get lots of support on this forum.
Can't write much more. It is very late my time in Kingston, Ontario. You know that you can make your own referral to Dr. Filler. Just go on line and look up The Nerve Medicine Institue and there is a phone # to call to make an appointment. It would be a good idea to get estimates for the assessment, etc.as it is expensive and I hope you have insurance coverage.
Take care and keep us posted. I send you a big hug.
Shirley
Thanks for the reply. I tried to shorten the hx as much as possible but it seems I left out some important info. The first physical therapist diagnosed PS and the chiro said sciatica. The PM just said "you better hope it's not PS because that's really hard to treat." The current PT also said it seems more like PS than low back but the PM ordered the PT for low back. Last Tues, however, the PT did some US around the piriformis for me. They have me doing the piriformis stretches, knee crunches, trunk rotation, etc.
I'm an RN and have done a lot of research trying to find out what's going on; especially, when I kept getting different diagnoses. I haven't had an MD acknowledge that it's PS.
No myofasical release therapy. She was doing some massage around the L2-S1 facets which helped. It seems everybody wants to attribute the butt pain to the back and it's not. I've also had a lot of other total body massages by several people who also thought it was PS. Thanks for the support.
It's very helpful hearing everyone's hx and progress. It seems Donna and David have come a long way and can finally see light at the end of the tunnel. That's what we all want.
Thanks,
Debbie
Thanks for the hug and "right back at you." :) You've had a really tough time with the pain and getting a dx also. It looks like that's pretty common. I know I can self refer to Filler but I'd also like to have the support of my PM. I forgot to mention that the pain/numbness is in the posterior thigh down to the knee. Sometimes it will travel past the knee but only if I've really been sitting for awhile which I don't do since I'm off work. All of the treatment costs that have been posted have been very helpful. I have insurance but I doubt if the procedure itself is covered since it's generally considered experimental. I'm a single/divorced mom with 2 girls so money isn't plentiful but I can't live this way any longer. You know the feeling. Yes, Leesa and David--please keep posting. We need all the positive stories.
It's very late here, 1:18 am, so I'm going to bed. Hope you guys/ladies have a good night.
Debbie
Debbie
I never jumped when anyone pressed on my piriformis either. I'm not sure if I believe in that diagnostic method but I'm certainly no expert.
Debbie,
My heart goes out to you and welcome. We found a place in Sana Monica(Venice Beach) that had a kitchenette. It was pricy but we probably broke even by not eating out. I don't remember much from surgery so I don't remember the hotel name but I'll dig it up when I get home from owrk if you are interested. Again, it was expensive. If you have questions, ask away. Very, very good people on here.
David
Still angry about it.
Shirley
I can't write a whole lot right now, but I want you to know that our story is almost identical. I am an RN, too (surgical/trauma ICU) and haven't worked since July. :( Also, the lack of diangosis has been UNREAL. It's amazing that no one can believe that our butt pain is coming from our BUTT. I could go on and on...I think alot of my story is in previous posts. But, your story tugged at my heart because I know exactly what you are going through. Hang in...
I'll post more later. Just wanted to let you know, from one RN to another, I here for you and am sending you many, many hugs and butt relaxing thoughts.
To everyone,
Still waiting on the referral. Hopefully will get a date this week. I have gotten some better meds that don't knock me out and actually take my pain down, so that has been a big plus for me. I have been really, really, really against taking pain meds so basically for the past year I've just been in pain with no relief. I finally broke down and tried a few meds and finally found one that worked well for me and I've decided to stay on the meds so that I can at least have quality of life. It's made a huge difference for me (and my finace!). So that has been a plus.
Also, cymbalta has managed to get me over this depression hump so that I am smiling more and crying less. It also helps that I know I'll be getting out to CA and there may be an end in sight.
Finally, I got a TENS unit and I LOVE IT! I call her "Ellie" (short for electricity) and she's my new best friend. My finance got me this really cool pouch/purse to put it in at our local climbing gear store so I look like I'm carrying around something "outdoorsy"...little do they know I'm getting an electrical current to my hiney.
Bad news: I think due to my increased activity, due to the new meds that allow me to get out and about, the sciatica has now gone down my RIGHT leg. Both sides of my butt have always hurt, but the sciatica was only left sided. Now, my right calf is catching up with the left...down to the foot...sucks, sucks, sucks. I knew it was a matter of time before the right side lit up, and it has.
I hope you all are doing well today. Again, hugs to you all. I love this group. You all rock. :)
Take care,
Julie
I think everyone is different and the pressing of on the piri thing. I am mentioning this because last week my PT was doing the thing he does with trying to release my butt muscles and he hit the piriformis and I didn't jump, but I did say, "leg pain, leg pain! down to the toes! holy c**p!" It actually felt like my middle toes had electricity in them. Never, ever has he managed to do that in the time I have been with him. So, no, I didn't jump, but when he started working on the muscle, it sent the sciatica down my left leg to my toes. Now that I think about it, I don't think hitting that muscle would make me jump. I ususally just spit out some profanity <grin> and grit my teeth.
However, when he went to the right side, it was just a sore muscle and he wasn't able to reproduce the leg symptoms. So, there you go. There are just too many variations.
I am SO glad you're heading out to see Filler. Good for you. Yay!
Take care,
Julie
I totally understood what you meant about freaking .no apology needed. I talk to the nurse tomorrow and will no doubt hear that it is normal for ups and downs. You and others are evidence of that in fact, with all of you I don t really need a doctor at this point What an uplifting post from you I m smiling from ear to hear to hear about your 1 mile walk and hope you are still feeling good. (Ditto on chiros .NEVER, NEVER, NEVER again.)
Shirley:
The new nurse seems very good. He s knowledgeable, understanding and patient. I think you ll like him. I didn t jump off the table when my muscle was pushed on either. It s different for everyone. I d wait and see what Dr. Filler s tests show before you start doubting yourself. I went through that too but just continued to ask questions of our Forum Friends and found that we all have slightly different reactions and symptoms.
Debbie:
I bought an expensive chair too, didn t do a damn thing. Your story is like mine and many I ve read. Keep searching for answers, you will find them. Keep asking questions too. I went through the whole it s your back thing too .it s all so frustrating. I will keep you in my thoughts and hope you are able to get some sleep. Don t lose hope.
Julie:
Glad you are finding some relief, it is hard to take pain meds but no one should have to suffer. You will find a solution and WILL get off the meds but for now, you need relief which will help cut stress which will in turn help cut the pain. Just try not to overdo it .ha ha. Glad you found Ellie.
Update:
I m feeling better because I haven t been on any outings . I do still have leg/toe pain (not as much) and the incision pain is getting less and less. Still taking hydrocodone every 4 hours and need it. Would like to start weaning off of it but will follow nurse orders!! Like I said, I talk to the nurse tomorrow and will find out what I should do next. I ll check back in after that phone call. Please take care everyone, stay hopeful and keep in touch.
Leesa
Leesa: You are gonna be fine girl, your surgery was short, only one side and Filler was confident he got it after the surgery. Just take it easy. From what I gather from all who had the surgery there are good and bad days.You are only 2 weeks out! I speak to the new NP on Wed and I have many questions and will share anything helpful to others.
Shirley, Don't let my 3 incisions scare you or the fact I still have pain. I had complex nerve damage on the Right side and he needed to make one incision to get to the piriformis and sciatic nerve( my sciatic nerve was split going down both sides of piriformis a genetic abnormalacy he said about 20% of people he sees) and one further down to get to the nerves going thru the sciatic notch that he couldn't reach thru one small incision. I didn't absolutely have to do the Left side superior gluteal nerve but it showed lots of adhesions on the MRN and even though the pain it brought was off and on and would actually mysteriously disappear for weeks and then return I opted to get it all done one time because its way too expensive to go back. Getting to speak to Dr. Filler is tricky. You have to make an appt to speak to him and he only does calls on Wed so once he fills up that day its the next wed hes free and the last time I called for one they said March. If you have an emergency he will answer an after hours page.
As of today I am almost 9 weeks post surgery and am pain free if I am real careful, but when I start to live normaly, bending, lifting light objects the sciatic pain returns, burning in thigh and bottom of foot primarily. This is what depresses and scares me. BUT I get great hope from others saying similar things even 3 months out, and even more hope from Davids last post. I really wish some of the others who had the surgery awhile back would drop back in and update us.
I read with great interest the case of Paul Dean whose surgeon was in Tustin CA. It was a site that a guy way back on I think page 5or 6 of this forum gave to look at. This guy still had sciatica a couple months post op and the surgeons answers were just like what Filler says. It takes months for nerves to heal, I take comfort in that as well. Go for it Shirley, you are suffering now and have been for , did I read right 1998? You have tried so many things to get better, at least do a consult with Filler and do the MRN he orders and take it from there. Taxi to pasadena for the MRN was the farthest from Santa Monica. $75 each way, but we didn't know how to get there and don't drive freeways so it was just another cost we accepted. hawaiigirl
Julie, I hear the tens units are wonderful, not a cure but certainly give relief. I'm happy for you! :D