Piriformis release surgery, discussion and information

Hi Julie, Donna, David and all of us in this club

Just been catching up with your postings. Julie, reading your story about being refused an injection (S1), and the frustration which follows. I had an S1 injection 5 years ago which only made my S1 pain worse. The thing is that after all these injections, I expected to be able to sit down for much longer periods - then there's a gradual flare up of symptoms - here we go again. My pain was so bad I could barely walk and at the time I vowed I'd never repeat it. It could be that the needle wasn't in the right place or that there was a leak which aggravated the sciatic nerve. It's so hard to go into depression over this but you're not ALONE. This is not just physical suffering, but also mental which can be devastating for ourselves and those around us.

Donna, hang on in there - the infection WILL be over soon and you can look forward to a brighter pain free time. Keep positive.

I was promised an MR Neurography in London nearly 2 years ago but apparently they STILL don't have the right imagery in situ! Dream on!
After my botox injection, stretching has been impossible without creating the spiralling pain. Suggested plan of action by Pain Management is a repeat of the botox, and waiting list for trial of spinal cord stimulator. (Get lost). It seems no one is up on this type of surgery in the UK.

I too don't have insurance cover and wonder whether the BBC might be interested in doing a documentary about Dr Filler to publicise to the world that this syndrome does exist and there is a surgeon dedicated to making people better. I think I have to sell my house and then live in a tent to pay for the treatment.

Thanks for the article Jo. Very, very interesting.

Hope this post finds everyone as pain free as possible. As for me, I did too much walking on Friday and it knocked me down yesterday. Not out, just down. Had quite a bit of relatively intense nerve pain in the left leg. My wife is now giving me the "I told you so" and I have no choice but to sit here and take it. She is quite the wonderful lady so I take her admonishment with a smile and a "yes mam".

Had my 2 week follow-up with Dr. Filler's NP and all seems pretty normal. She thinks I may be a bit too aggressive regarding eliminating pain med dosage. I'm no pharmacist or physician(so I don't know what is aggressive and what isn't) but I cut back to 1 Tylenol #3 every four hours on Friday and increased walking. Mistake. I'm now back to one pill every three hours. At least I seem to have the side effects under control for now. No nausea and far less constipation. Mixtures of diet 7-up and prune juice(a concoction that is worse than the pain) seems to have cleared up the latter.


David

Oh yea. I meant to ask Julie and Kayti if they had tried the heat pads I recommended. One on the low, low back and one on each GT joint. It won't fix you but it relieved much of the pain for me prior to surgery. I think it relaxes the piriformis.

Hey Jo,

I actually had an SI injection on the right about 5 weeks ago. We are redoing it because I did have a tear in the capsule (at least that is what the PM doc said) and rather than putting 2cc of solution in, he put 10 and paralyzed my leg for 12 hours. It was really hard to get anything diagnostic out of it because my entire leg was numb and paralyzed. So, I couldn't tell if it was SI pain that was relieved or piri pain. It was so numb and paralyzed that you could have broken my ankle and I wouldn't have known it. And since my pain is bilateral we're redoing it with another doctor and doing both sides. I am not going to have any steroid put in there...just lidocaine...I want the test to be purely diagnostic.

I think my SI pain is seperate from the piri pain, but it's a no brainer that the two are linked in some way. All my pain started as butt pain with no SI or low back pain at all. About 3 months into this my SI started burning and all my muscles on the left side of my back got tight and inflammed. It's been that way for 7 months now.

Basically, everything about my butt hurts, from sacrum to trochanters, but the "epicenters" are bilateral trochanteric/butt pain and right SI. I feel if I could remove these pain generators (or at least localize them!) I would be much better. The trick is finding the true pain generator and treating it accurately.

Julie

Thanks so much for your post

David, Donna, how are you doing? Sending healing energy your way.

Hi Julie,

I'm getting incrementally stronger and better each day. Not step changes like when I was 20 but small steps each day.

I wake up each morning with NO nerve pain. As I get up and move around and stay up and moving, I can feel tiny spasms in my rear and the nerve pain comes on but in slightly less degrees of intensity each day. Last couple days I was up and moving a great deal. By late afternoon(6 ish), I'm tired, kind of stiff and sore.

HOWEVER, and it's a big however, I AM getting better. Not at the pace I would prefer but better nonetheless. I plan to go back to work next week starting with half days and working my way up.

My incisions are healing very nicely and my rear gets less sore every day. Sitting is much easier and now I'm trying to increase my range of motion by lifting my foot and placing on the seat of a chair and so on. It feels great to stretch my hips and rear that way. As soon as it warms up a bit and quits raining, I'll movie from walking in the garage to out on the street. I intend to increase my walking length 1-2 homes at a time because I'm usually very guilty of trying to come back to fast and just setting myself back. So, I'll use my head this time and make small incremental improvements. It's going to take me a while but I'd like to be back to full strength(upper and lower body), if possible, in about 4-5 months. Only time will tell if this is realistic or not but I need a goal and this is it, for now.

Can't wait to hear from Donna as well. I'm betting she is doing somersaults as she reads to be much tougher than I am. :=)

David

p.s. Julie/Kayti - heat pads???? did you try?

Hey David,

Does your nerve pain follow the course of your sciatic nerve or is it an all over sort of nerve pain. How are your trochanters feeling? How much do you feel you have improved since surgery? I

One of my questions about PS is if it has to runt the course of the sciatic nerve in order to be PS. My nerve pain, at times, is not "sciatic" but it is nerve pain. On my left side, I have what I call the "chronically injured calf and hamstring" which I'm pretty sure is sciatic. My right side isn't sciatic, but my butt burns like crazy.

know its only been a few weeks, but your "play by play" updates are so helpful. Seems like no one (besides the people on this forum) have posted about this surgery, and we know that it's being done because Filler is fixing PS left and right. So, you guys are my lifeline, so to speak.

Congrats on getting back to work. I would give anything (including my piriformis) to get back to work. I love being a nurse and I devoted my whole life to that field. I am a truama/icu nurse and it was hands down the single most rewarding job I could ever have. I am blessed to find a job that I love so much. Not having that in my life is hard.

Yes to the heat. I actually got a really nice heating pad that wraps around my butt and it is nice. Sometimes it's a little too much as my butt is already inflammed...but there are times when it is very nice. If anything, having heat on my butt is a different feeling than the constant burning searing butt pain.

I am scheduled to see Filler on the 23rd of this month. I am trying to get my finace to go with me because I know I will need a driver after the injections. We are trying to save $$ and just send me out there solo. I just can't imagine taking a plane, navigating the airport, driving through LA, etc by myself with my crippled butt. I can't even walk through the grocery store, much less through an airport. That and emotionally I need someone there. This is the hardest physical and emotional battle I have ever felt.

Thanks for answering all my questions.

Take care,
Julie

Sorry about everyone's difficulties, being turned down by a doctor, infection, constipation and what have I missed. I have not had a chance to be on the computer because my son and partner are here from Vancouver. David, as for constipation you may want to increase your fiber intake by taking a natural fiberlike binefibre or metamusil. kThese are not drugs but natural fibers which will help with constipation. Drink lots and lots of fluid with them. There was no Dr. Filler around when I started having this problem so I started on pain meds about 3 years ago after fighting the pain as well as doctors who didn't believe in piriformis syndrome which really pisses me off when a doctor like the one Julie saw makes her doubt herself

Bye for now and hope everyone is doing better.

Shirley

Julie,

My nerve pain was in both legs. It felt like a bad sunburn and I wore jeans. It was a combination of a chafing and and pressure feeling. This feeling occurred behind and inside each knee primarily. I also had severe burning in the feet. Enough so, that I actually pursued testing for diabetes, which was negative. Finally, my GT joints ached and occasionally had sharp jolting pain.

Post surgery - my right leg gives me little, if any, nerve pain now. My left leg, which was the leg he found to be worse, still gives me problems but it seems to be improving a little each day. Filler warned me that it may take months for this to improve dramatically because nerves take a great deal of time to heal.

What I find hopeful is that I wake each morning with no nerve pain at all. It comes on in the left leg as the day goes on and I can tell because I feel my buttocks spasm. I'm looking forward to the day that my sectioned piriformis muscles chill out and quit spasming. When that day happens, my nerve pain should go away for good. They are slowly figuring it out but they are taking their sweet time. Man, were they pissed.

Julie, I'll let others who have been through the injections weigh in but I recommendation, strongly, that your fiancee go with you. In fact, you should call Dr. Filler's office to see if they will even inject you if you have no escort. You won't be in pain but you will be numb, or at least I was. Driving yourself would be difficult at best, dangerous at the worst.

Three weeks post surgery and I cooked dinner last night. It's a guy thing but this tiny contribution felt so good. I got to tell my wife to relax and I cooked and my son did the dishes. Not contributing around the house like I used to has been one of the most difficult parts of this. I know, it's probably a guy thing.

Julie, go see Dr. Filler and you WILL go back to work.

Keep asking questions.

Shirley, thanks. Between the God-awful prune juice/7-Up mix and shreaded wheat, I'm straightened out now. LOL, I've learned that there are too many things that we take for granted.

Oh yea, I forgot to answer the "how are the GT joints feeling" question.

Much better but still slightly sore. This too is improving with time. I feel them more late, late in the day when my legs are tired. I think the real test will be when I hit the walking trail with more vigor.

By the way, I'm having to remember to take my pain meds. In fact, I've begun substituting regular Tylenol for the Tylenol #3 stuff. Doubt I can make it all day like this but if I can replace 1, 2, or 3 doses each day, then I should feel pretty good about the progress.

For the record, this surgery rehab is no picnic. At least not for me. I'm not the most patient person walking(when it comes to me) so I keep thinking that I should be further along sometimes. However, my wife keeps me grounded by reminding me that I had a 7 hour peripheral nerve surgery just 3 1/2 weeks ago. She also likes to tell me I'm not 20 any longer. GRRRRR!

Okay, she has a point but so what. Since when did that matter? LOL!

David its great to hear how your recovery is going. You are right to plan to take it slow....no I am not doing somersaults yet. As Sheila recommended, I'm waiting to begin an exercise program until 3 months post surgery...coming up in three weeks. I'll try to get some direction from her or Dr. Filler about exactly what to do. For now, I'm walking at a fairly rapid pace, not quite pre-surgery, but not snail pace either, for 30 minutes twice a day. I am more than ready to shed all the weight that I've gained from lack of exercise and as side effect from all the meds. I've gained 25 lbs since this all started and I want it all gone as soon as possible.

I'm not giving as detailed up dates anymore since there is hardly anything more to write about. My left side is 100% better, no pain at all and the right side is just dealing with the incision site infection. I will keep you informed as I begin exercising again about how that goes and what Dr Filler recommends etc.

The infection is almost cleared up, but I still have to do the drainage process daily. At least now my husband has been given the ok to do it at home and we don't have to go into the clinic every day. The muscle around the incision site is causing a bit of pain, but its getting better every day.

Julie, I didn't have Dr Filler do any injections, but my experience from here is that you really need to have some one with you. I never felt like driving after the injections, just being in the car was bad enough. And LA traffic is horrible. And I will second the need to have someone there to support you emotionally through the injections and the decision making process that follows.

Shirley I highly encourage you to follow through and make an appointment, the sooner the better. You'll be glad you did.

Donna

I wanted to comment on symptoms. Julie asked about sciatic pain. I definitely have sciatc pain, hip pain, butt pain, etc. One thing that is rather confusing (for me anyway) is that I read other people's symptoms and all of mine don't exactly coincide with everyone elses's. I'm wondering if PS has some but not all of the same symptoms? For instance, sitting gives me relief but the longer I sit the worse the pain is after I get up and start walking around. I've already had the neurography with Filler and he says it is consitent with PS. Wonder why I can sit ok w/out much pain?? Sometimes it hurts to sit but not always. Anyway, I'm most likely going to have surgery wth Filler but these things confuse me and make me wonder. Can anyone else sit with little or no pain?! Walking and standing are BAD.....Glad you are better David Thanks.

Leesa

That's great Donna. Good to hear from you.

Leesa,

I've got a funny feeling that it's a little different for everyone. I didn't have any real problems with sitting prior to surgery either. Based on what I've learned, these are peripheral nerves and they tend to be squirrelly and independent in terms of impact on each person.

Having said that, I know how you feel. You wonder if you are truly getting the right diagnoses and heading down the best long term path, especially if faced with surgery. Lord knows I spent many, many hours thinking my diagnoses and that decision through. Perfectly normal and natural especially when there are so few physicians that treat for this(i.e. it's very hard to obtain a second opinion like you would for a torn knee ligament).

Hi all. My name is Elsie and I had piriformis release about 4.5 months ago. I used dr Hal Martin in Dallas at Baylor. He has some papers published on the matter, and I think he's another good option for anyone in the area.

I was on crutches for the first 12 weeks. I had profound weakness after releasing the PM. I'm just getting where I can walk without much of an altered gait. I was misdiagnosed for 3.5 years, I was lucky that I didn't give in to unnecessary back fusions. I still have some nerve pain, that deep ache, when I sleep. PT is helping greatly. I'm not on any meds, maybe the occasional Tylenol. My nerve was damaged (demyelinated), so I suppose that's what I need to heal. I'm not back to work yet either.

The recovery isn't easy. Or wasn't for me. I've heard accounts that others have been back cycling in a few months, or walked out of the hospital 100% better. I'm definitely better, but ~30-50% of the pain is still there. Some days the pain is 10% of the pre op pain. And I can definitely over do it if I'm not smart and ease in to the recovery. I keep a log (walking distance/time) so when I feel like I'm not making process, I can see a needed cut back/rest period.

My insurance covered the procedure, Aetna.

I was a runner but I'm not sure I'll get that back anytime soon. Anyone ever make a comeback? My non surgery side seems to be trying to flare up. Hopefully it won't ever get as bad and require surgery.

I agree, the pelvis is probably out. My hips were out, psoas muscles were extraordinary tight, and I had back spasms. My PCP had never heard of piriformis syndrome. It's just difficult to get diagnosed let alone treated. Steroid shots helped me. But it seems I was one of the few lucky ones there, as most don't seem to get relief.

Maybe find someone that can send you for an EMG? But even armed with that, I was told PS didn't exist.

A physical therapist should be able to work on your hips and overly tight muscles in the mean time. Muscle relaxers helped alleviate some pain too.

Angry nerves love heat. I haven't read everything here yet- I know it was mentioned by someone. It'll help.

Good luck. I know it's a terrible place to be. It really feels like no one gives a damn.

Thanks David. Very glad to hear you didn't have as much pain sitting. And, glad you know exactly what I was trying to say. If I have this surgery and it doesn't fix my problem, I will be devistated. For now, I will trust that Dr. Filler says it's PS and pray to God that it really is!!

Keep taking it slow.