Piriformis release surgery, discussion and information

Wow! I go out of town for three days and come back and find that all sorts of new people have discovered our little "club"! Welcome Debbie and Hawaiigirl! So sorry you're part of the club but we're a great group of miserable people!

Hawaiigirl...what island are you from? Just curious. We have a vacation place on Maui. (Kihei) I'm with you on the "bending" issues but it's only bad for me if I forget to bend my knees. If I attempt the old bend over and touch my toes maneuver - even if I only get as far as my shins - it will bring on the pain every time. For a long time I had a PT person I worked with that just kept on insisting that I do tons of stretches and I just kept getting worse and worse. This was before my PS diagnosis. Fortunately I no longer see her. But I've thought of some great things to say to her if I ever run into her at the mall or something!

And speaking of that.......Julie, don't underestimate the healing properties of profanity. A good loud @#"+*^%! in the privacy of your own home can often work wonders! Any news from Dr. Layzer's office yet?

David....so glad to hear you say that you feel better than you've felt since last June. You're a little ray of sunshine for the rest of us!

Shirley.....I don't jump off the table either when they press on my butt. However, within a few hours the burning in my butt and leg increases and stays flared up for days. Having dealt with this since 1996, every new doctor I've tried will, at some point, press on that area "just to see what happens". I always knew EXACTLY what would happen but they do it anyway. "Hmmm," they would say, scratching their chins. "I wonder what will happen when I press here?" I wish I'd had the courage just once to deliver a back kick to the groin.

Debbie....I, too, am the proud owner of not one, but TWO $1000 chairs!! You'd have thought I'd have learned after the first one didn't cure me! I also sprung for one of those gizmos that hang you upside down. Also didn't cure me. Then I tried a Total Gym at the recommendation of my PT person (the one who is fond of excessive stretching). The Total Gym was also not the answer. Truthfully, I've gotten more "relief" from this forum than from the chairs, the hanging upside down gizmo, or the Total Gym. But my TENS unit is different. I go NOWHERE without my TENS unit.

Leesa....if you need any of us to write letters to someone at the company where you work, just say the word! Please continue to take it easy and slow. For those of us who haven't yet had our surgeries, it's so great to have so many of our forum buddies like you who've been through it and can assure us that it will get better - even if there are up and down days.

Sadie....haven't heard from you in awhile. What's going on with you?

Wow! As you all know I'm not usually this chatty! Hope I didn't put anyone to sleep! Take care, all!

Margie

Heya Margie,

They got the referral at Layzer's office and that I would hear from them by the 21st. If not, call back and bug them. So, he's got the paperwork...just waiting for the phone call. Grrr...

Btw, where do you get replacement pads for your NMS/TENS? I'm trying to find the cheapest place online to get them and there is so much variance. I went to a local place here in town and it was $20 for four pads! Yowza! I screwed up with my first set and pulled them off at the wire one too many times and the wire yanked out. ooops.

Rumor has it that my insurance is supposed to cover the supplies for Ellie for the first ten months so I put in a phone call to the rep for the unit to see if this is true. In the meantime, I'll just order them online.

Take care,
Julie

Margie--I too have an inversion table--Teeter Hangups--the best from what I hear. Didn't help the butt. My insurance company is paying for my TENS pads and sending them to me automatically every month. The TENS was the only thing that got me thru this last year at work. I sit constantly and was wearing it all day.

Shirley---Thanks for the welcome from you and everyone else. It helps so much to 'talk' with people that know what I'm talking about when I say "butt pain." I have some other problems throughout the entire spine but right now, the butt is the main thing and the rest is just DDD. Thanks for the words of sympathy. I think that also played into the MD reactions--you're just depressed. Sure I'm depressed---from hurting in the butt for 4 yrs! The psych and therapist are now agreeing with me--the physical butt pain is really there! I will say, however, that the psych has been really helping me with the neuro meds--gabapentin, cymbalta, ativan. Even my PM is wanting me to just take 2 Percocet a day. I tried to get him to go back to 3 but he wouldn't. Unfortunately, I can't take any NSAIDS.

To all---I will be setting up an appt with Dr. Barbaro. He's in network and Filler is not. UCSF and Filler's hsp are also in network. I suspect insurance will not pay for the MRN since it's considered experimental. How's his office staff with scheduling and working with long-distance people? I know a couple of you saw Barbaro so I'd really appreciate your help as the date gets closer. If not for this forum, I would not even have known about him so thank you very much!!!!!

As for pushing on the piriformis. IF someone takes the time to even check it out appropriately, it takes me off the table and puts me instantly in tears. Only the PT and massage therapists have any checked it out. The PCP tried but did it with me standing which just doesn't work. Oh, and that was 3 yrs ago.

Hang there troops. We have the positive feedback from our pioneers and each other to get thru this and we will. (See, you've got me talking positive already!

Pain-free thoughts and prayers going out to everyone. Debbie

Julie,

I get the pads for my TENS unit from Amazon and normally pay about $6-$7 for a 4-pack. I had someone tell me once that to prolong their life, keep them in the fridge. Also, as they start to lose their stickiness, dampen the sticky side with a tiny bit of water and then put them in the fridge. It really works!

Debbie,

Julie and I are both using Dr. Barbaro. I'm a little further along in the process.. Before you can get to see Dr. Barbaro you typically have to go through his "gatekeeper", Dr. Layzer. Once Dr. Layzer has seen you and determined that it is PS, he will refer you to Dr. Barbaro. Dr. Barbaro has a scheduler who sets up all his appointments. Her name is Erica. She's nice but just not the most personable individual - very business-like. His nurse, Marianne, is very sweet. I'm very impressed with Dr. Barbaro. He has an excellent reputation. Plus, he's a preferred provider with Blue Shield!! I'm thrilled about that because I would have to take out a 2nd mortgage to pay for it on my own! Also, my insurance paid for the MRN so hopefully yours will as well. I live close to UCSF (about 45 minutes away) so I wouldn't be able to answer how well his office is at working with long distance clients. Julie might be able to better answer that question.

Take care,

Margie

hi can you please tell me the name of the doctor in yorkshire or the hospital. i am deperate for answers

Margie

Thanks for the good news about Barbaro and insurance. I had already checked and knew he was a provider but didn't think they would pay for the MRN. I was reading the previous posts about insurance and thought I'd have to fight them because of the "experimental" part. Did you have any trouble with that? I have Independence BC/BS out of Pennsylvania but I live in KY. What does Layzer do and will I be able to see Layze and Barbaro in the same visit? What kind of 'pre op' stuff does Layzer want done before I fly out there? Should I just let him do what needs to be done?

Debbie, I just sent you a PM with a lot of the details about the whole Layzer/Barbaro referral process. It's quite an ordeal I'm finding out. Lemme know if you got it.

Margie: just got off the phone with the rep for my TENS. He's working on getting my new pads for me. Thanks for the sticky tips! Now if I could only find a way to politely hide these wires so that I don't look like I'm a suicide bomber with all these wires coming out of my pants I'll be a happy camper. :D Right now I'm just resorting to stuffing them down my pants and in my pockets.

Gonna go walk the dog with the TENS on for this first time in a minute. Wanted to see if it helps me walk a little more comfortably. Wish me luck.

Take care,
Julie

Margie
You probably already said this but what kind of follow-up does Barbaro do? Does he do the phone call stuff? How long does it take to get an appt and do I schedule it with Layzer or does Barbaro's office do it? What does he want done first that needs to be done before I get there. I don't need referrals with my insurance but does he want a referral from another doc? Can everything be done in one visit? I really wish I could see Filler but between all the travel and nonpar expenses, I just don't see how I can do it.

Everyone
What kind of experiences have you had with work and are you working now? Did you file for SSD?

I have a hard time remembering who wrote what (short-term memory loss) so I hope I don't upset anyone if I just throw the comments and questions out there with a name attached. I really want any input I can get anyway. Thanks
Debbie

Debbie

Hi everyone:

Spoke to Ever (sp?) the new nurse at Dr. Filler's office. He said the returned leg/toe pain is expected and because it's less than before this is a really good sign. He said they ususally tell people it takes around 3 months to see if the surgery worked or not but that it's really 6 months. I'm ok with that mostly because I already see some improvement. Feel like anything going forward will just be better and better so 6 months really doesn't sound like a big deal to me anyway.

The incision pain is WAY better. Just took a 3 block or so walk and overall it wasn't too bad. We'll see how the rest of the day goes and if it will cause more pain or just be ok. I'm banking on "ok"!

Take care all.

Leesa

Julie....Yeah, I look like a suicide bomber on a regular basis. I usually stuff them down my pants or in my pockets. I have a little cloth bag with a long shoulder strap that I usually keep it in when I'm out in public so that hides it pretty well. I've only gotten interrogated once going through security at the airport. They were concerned about the 2 extra 9 volt batteries I had. Didn't know you could blow up a plane with 9 volt batteries. Maybe it was my suspicious looking face - red hair and freckles!


Debbie.......Julie said she emailed you privately about the Layzer/Barbaro thing. I seriously doubt you can get it all done in one visit. Layzer is the diagnostician in the neurology dept. at UCSF. He will meet with you, examine you, talk with you, and then if he thinks you have PS, he will order the MRN. If the MRN comes back at least semi-positive for PS, he will refer you to Dr. Barbaro who will then order the guided injection which is the final piece of the puzzle. A positive reading on that should make "all systems go" for the surgery. Let me know if you have other questions that either Julie or I did not address.

Margie

Wow you guys sure have been active while I've been away. I'm so far behind in posting I hardly know where to begin.

But, first, welcome to our new members. Glad you've found us, although very sorry you have a need to be here.

Leesa, glad to hear you are doing well and feeling better bit by bit. It is so hard to remember that full recovery takes time and that it really does depend a lot on not overdoing it. Remember to take it easy while at the same time increasing activity bit by bit as your body tells you.

David, Really glad to hear about your good days! Keep hanging in there
and those good days will keep getting better and closer together. There's not really too much specific to tell you about the rehab program the sports med doc gave me. He's never dealt with piriformis, so what he outlined was general lower body stretches, like you'll find on any exercise web site. He didn't want me using weights yet for strengthening but did suggest squats, toe raises...again the normal exercises you'll find for lower body on any web site. In a sense I was disappointed that he didn't have anything magical, but on the other hand, it was good to know that what I had figured out on my own was the right thing to be doing. He was very firm that I shouldn't be walking on any incline yet and also very much in favor of swimming. He suggested 10 minutes twice a day of stretching and 40 minutes once a day and 60 once a day for walking.

Shirley I'm glad you've gone ahead and made an appointment. Here's hoping Dr. Filler will be able to help you.

Julie, really glad to hear the TENS is helping you. Hope your appointment comes through quickly.

Ok I'm off and running again. Last night with our US visitors here and then maybe I'll have time to keep you more up to date. Keep hoping and hanging in there.

Donna

Hey all,

Great news before answering questions.

Already told everyone that Sunday was great. Monday, just had a little burning in my right foot. TODAY, I woke up for the first time since June, 2006 with no/none/zilch/notta nerve pain anywhere. NONE!!!!!!!!!!!!!!!!!!!!!!!!!!

I'm a grown 47 year old man but I was in tears. Joy tears. Now, as the day has gone on, I have a little pain in my upper left butt(lower back) but very manageable.

Again, tomorrow may be different and I am prepared for it but I AM GETTING BETTER and I'm praying this stays and continues to improve. I am so close.

Okay, questions:

Shirley: We stayed at the Best Western Pacific in Venice Beach. Expensive but it comes with a kitchen and the people there were so helpful and kind. One night they actually had one of their people go out in the literal middle of the night and pick up some toiletries for me. It is located in Venice Beach right next to the beach and is maybe 10 minutes from Dr. Filler's offices and a half hour from Cedar Sinai.

HawaiiGirl: DO NOT worry about questions. Ask all of them. That's why I am on here and will remain on here. My pain was in both legs. Specifically, it felt like a very bad sunburn down the back of the legs with severe burning in the feet and buckling pain in my GT joints. The left leg was by far the worse and has remained the more stubborn of the two legs. LOL though, it has felt better the last few days than the right. I have no clue why.

My surgery was nearly 8 hours. Dr. Filler found the left leg to be a mess with adhesions from my upper left buttocks to the hamstring. The right leg had adhesions but not nearly to the same extent.

One thing I've noticed during recovery is that the more active I get, the better I am feeling. Walking, lifting the pup(who is gaining about 1.5 lbs per week), bending, working, etc. is initially uncomfortable but it seems to be accelerating the healing process. I know that this has to be done in moderation as I am still only 10 weeks removed from surgery. Frankly, it has been kind of a self regulating process because I can immediately tell when I have done too much. Then I just back off a little, let it catch up for a day, and then I come back stronger.

Oh well, I hope that helps some.

Please forgive me if I missed someone's question(s). Please ask again and I will get back to you.

Julie, it's great to see you posting again.

CHINS UP!!!

Your friend,

David

Could anyone recommend a surgeon to us in New Jersey, who performs the piriformis release surgery ? I've been suffering for 1.5 years and have exhausted all other options.
My problem is, I am unable to travel to Los Angeles to see Dr. Filler, because I have 4 small children and no family or anyone who could watch them while I am gone.
I live in southern New Jersey and could travel to Washington DC or NYC.
I would be so grateful for a referral here on the East Coast.

Okay, I missed some things. Sorry. This board has been active.

Donna, thanks so much for the rehab issue. Especially the "do not do incline" info.

Julie/Margie, fantastic about Dr. Barbaro. It appears that many have a very high opinion on him and I wish I had known about that alternative when I had mine done. All my med bills were reasonable because of insurance but Dr. Filler. LOL, BC/BS still has that bill in process where it has been for weeks. I wonder what they are struggling with.

Hawaiigirl, yes, pain in the butt prior to surgery and I've had more since for the obvious reasons. Initially, the incisions were a component of the pain but now the butt pain is simply due to spasms which are now tending to fade. Skelaxin, the muscle relaxer, has been EXTREMELY helpful in taming those. No butt spasms, no pain anywhere. I really like Skelaxin because I tolerate it very well in terms of being able to normally function(drive, work, etc). I take 1/2 a tablet every 4-6 hours which totals to 2-3 per day. As I continue to improve, I want to get rid of them completely but they are not habit forming nor does your body learn to require them. Once I stop using them, I should have no side effects.

Whew. Again, please forgive me if I missed something.

David

Dang.

Leesa, that is great news. Yes, I keep hearing 3-12 months.

Debbie, that's great about Dr. Barbaro as well. LOL, I'll bet he and Filler are wondering how all this business is dropping in their lap.

Now I think I have it but let me know if I don't.

David