Piriformis release surgery, discussion and information

David:

Sounds like you're having a string of bad days which I'm very sorry to hear. How are you today? Don't be afraid to vent or let us know if it's still rough going. It's important to be supported through the good and the bad.


Just checking in on you.

Leesa

Hello, I had not checked this site for a while and was so shocked to see someone else from oklahoma with the piriformis syndrome. I went to your doctor's website and called him Friday. The receptionist said they do not take Aetna insurance but I am thinking about going in and see him anyway. If I read this right you had surgery in Oct 07. Can I ask how you are doing now. I am dismayed to see some have had the surgery and still have monumental pain. I kept thinking if I had the surgery this nightmare would be over. Is it possible to be in more pain? I would be interested in any details you might want to share. I live in Norman so going to OKC would be great for me.
Robyn

Hi All,

I hope this finds everyone well. I've been following this forum for awhile and I finally decided to post with some questions. I'm 23 years old and I've been having severe, sharp pain along the back of my left leg for almost three years. I had to leave graduate school and move back with my mother, I'm not able to work, and I feel that I've lost my entire life.

I'm currently going to my fourth pain clinic, and we've tried dozens of pain medications, nerve pain medications, muscle relaxants, epidural injections, IV lidocaine infusions, acupuncture, chiropractors, rolfing, massage therapy, PT, Botox injections, intrathecal Baclofen, etc. I had a spinal cord stimulator implanted last spring, but it is only mildly effective and dislodged for the second time over the summer. It's been causing alot of pain since it dislodged, and so I'm having it removed next Wednesday. Currently, I'm taking high doses of Baclofen (a muscle relaxant) throughout the day, and I'm spending most of my time sleeping because of side effects. At my pain doctor's last week, I broke down crying, and he's making me start Oxycontin, which I really hate having to do. I always saw narcotics as a last resort, and it kills me that I'm at that point already.

I've seen multiple neurosurgeons, physiatrists, anesthesiologists, and orthopaedic surgeons, and they all believe that my pain is caused by a minor scar tissue attachment of my spinal cord; I've had it since birth and have even been operated on for the condition. However, I've experienced the type of pain that it causes, and it's nothing like what I'm experiencing now. My MRI is otherwise perfect. Nothing that I've read would lead me to believe that the scar tissue is causing this type of pain, and I know that I'm not a doctor, but I just know that my leg pain is caused by something else.

One of my friends from college sent me a link to some information about piriformis syndrome, and I honestly thought that she's published it on the web herself just to make me feel better - it described my pain exactly and it fit the whole picture in so many ways - what contributed to the problem, what makes it better, what makes it worse, and why my pain hasn't been consistent with pain related to the scarring in my spinal cord. Unfortunately, I can't convince any of my doctors of this; they still think that the scar tissue in my spine is the cause of the problem and that I'm just presenting abnormally. They want to do repeat spinal surgery, and I just don't think it will help.

Once my spinal cord stimulator is removed, I'm thinking about going out to see Dr. Filler; I've read alot about him on this forum, and I've also done alot of research on him. Whether or not it is piriformis syndrome, I think that he'll have some answers for me. I'm on the East Coast, but financially, seeing him isn't a problem for me. My problem is a lack of support. My father and grandfather both passed away, my grandmother is getting older, and my mother has severe psychiatric issues. My friends and my brother are too busy with work to come out to LA with me - when you're young, it's difficult to take alot of time off of work. I'm a pretty strong person and I don't need emotional support while I'm out there, but I think I will need some help logistically. Another problem is that my pain is so severe that it's impossible for me to drive right now.

For those of you who've traveled to see Dr. Filler, is it possible to do it alone? Can I handle the injections and possibly even surgery without having someone there? Can I take taxis to and from his office and the MRN location, or should I hire a car service? If I have surgery, are there any visiting nursing services available, or temporary care facilities? How long do you need to stay in LA after the surgery? They told me to plan on staying for three days - does anyone know what the usual progression of events is and what usually happens? I have a very close friend (my former college roommate) who lives in LA and offered to take time off of work to see me. I don't know if I should ask her to come with me to see Dr. Filler, or if I should have her take off the second or third day I'll be out there.

I also wanted to know how much money I should travel with; how much money do they expect upfront? The person at Dr. Filler's office wasn't able to give me a straight answer, but I just need to know how much I should take out of my investment accounts and have access to when I travel. Are they comfortable with billing patients later on, or do they need it all upfront?

Any help would be appreciated! Thanks!

~Jennifer

Jennifer:

I'm sorry to hear about your history with horrible pain. I'm sure you will get a lot of support and information from others on this site, as I have.

First, you should take your friend up on any help she's able to give to you. My first visit with Dr. Filler was just an office visit and I didn't need anyone with me. Then I had the neurograph. I had someone with me for that but it's not necessary. Don't get me wrong, it's always nice to have a friend with you but for those 2 appts you don't really need anyone there. Dr. Filler requires a driver for any injections you get. I can't speak to how far apart these appts will be for you, it will depend on scheduling and availability for each procedure.

As for down payments, they asked for $150 down (total $500 for the initial visit), $900 down for the neurograph and $870 down for the injection. The total amount for the neurograph and injection is still being worked out with Dr. Filler and my insurance co. If my insurance doesn't cover any of this (which is possible) Dr. Filler will give a discount. But, total out of pocket for the neurograph would be $2,400 if insurance pays nothing. They take checks or credit cards so you don't have to take cash if you don't want to travel with a bunch of cash.

I haven't had surgery (yet) but based on what I've read, you will want someone with you and will need someone to help you after. I'll let others who have traveled to have surgery answer your questions about travel, taxis, etc. I'm local. There are some prior detailed posts about this if you want to check them out.

I hope you find some answers, I know how horrible it is. Take care.

Leesa

Jennifer,

Welcome to our "club" We're glad that you've found us, although I sincerely wish you didn't have a need to. Sounds like you've been through a lot already and I really hope you find answers to your pain very soon. Keep hoping and feel free to ask as many questions as you want and need. I've had success so far and am more than happy to share my experience in hopes that others may experience pain relief as well.

I had surgery with Dr. Filler in Oct. and I know my progression was far from usual! He knew I had traveled from Honduras so the whole office did what they could to make things happen. I had my first consult with Dr Filler on Monday morning, the MRN at noon that day and surgery the next day. Since I had had the required injections here, he didn't ask me to repeat them there.

My surgery was on Tues morning and I was released on Wed morning. It was absolutely necessary to have some one with me following surgery. There was no way I could drive or prepare food or anything. My husband and I returned to our hotel on Wed morning...stopping on the way to pick up pain meds, which is another thing I couldn't have done myself. Friday we returned to Dr Filler's office for a follow up with his nurse practitioner and we left LA on Sat morning.

We used our credit card to pay the required deposits, so we didn't need to travel with cash. Dr. Filler's office required a deposit of 30% or about $6,000 before the surgery, although they offered to work that out if I needed.

I

Hope this helps
Donna

Hi all,

Yes, it's been pretty bad lately(since Tuesday night). My right leg is healed for all intents and purposes in just 6 weeks(this coming Tuesday). The left leg has been rough. Very rough. Yesterday, I felt like my whole leg below the knee was numb/tingly. Then, this went away and my left buttock burned deeply.

I sucked it up because we had committed to having people over last night. I just have to give my wife some normalcy so I gritted my teeth but it was hard. Very hard.

I'll be honest. I'm very troubled about my left leg. I know it's early but it seems to be going backward, not forward. At this rate, I would rather have someone just remove it so I can be pain free. I know it sounds silly, especially coming from a grown, responsible man but it hurts VERY much.

This pain is a complete function of spasms in my butt. Today, I took two half valiums(very low dose) and I could feel the spasms release. The pain has subsided tremendously. Our neighbor is a pharmacist and he said there are muscle relaxers that are mild enough that you don't get loopey. I can't remember the name of them but will be calling Filler's office tomorrow to ask for a script of them after calling my friend for the name.

Yes, I'm very down but I'm not giving up. I need to know what is spasming because I thought Filler cut the nerve to the piriformis which would kill that muscle. If I don't have spasms, I'm pretty good and I can wait for the nerve to heal. I need Dr. Filler to tell me what the hell is going on back there and how what we need to do to fix the spasms.

Yes, a little angry and very tired as well. I'm so tired of hurting especially after making so much progress. As Vince Lpmbardi once said, fatigue makes cowards of us all. So, it's time for me to cowboy up, quit whining, quit fretting and take some action.

Sorry for the downer post. Been thinking of all of you and hope you all are well.

David

David,

Ugh. I've been following your plight. We all feel for you and are hoping things change for you very soon. And enough with the whole "trying to be tough testosterone" thing. It's okay to whine! In fact, you should allow yourself to whine a bit everyday. Allow it for a prescribed amount of time and then be done with it until the next day. Whining can be soothing.

Hope your tomorrow is better.

Margie

David:

First, I love that you quoted Vince Lombardi! The Packers are my favorite team so I'm pretty happy today.

I KNOW you will get better. I'm glad you are still fighting. I too have wondered if I could get an elective amputation so I didn't find that comment whinny OR ridiculous! Just keep in touch with Dr. Filler, get an explanation and do whatever they say....even if it means doing nothing for a month or more. You've been through a lot and need to take it easy to heal.

Hang tough, whine when needed - we're here to listen.

Leesa

David,

The road to recovery is hard, very hard at times. Its so easy to fall into the trap of thinking "I had surgery, this is all supposed to be better NOW!". Its easy to take advantage of the good times and push too hard and then its downright hard when you realize that you aren't back to normal yet and you have to pay the price for trying to be there.

Its easy to say and much harder to believe and put into practice. But be easy on yourself. Give yourself time to heal and relax. And yes, go ahead and whine for a while...it does help as long as it does not become the focus of your recovery and your life.

I really admire you for sucking it up and allowing your wife to have people over. That takes a lot out of you, to sit and be hospitable when its the last thing you feel like doing.

I hope your talk with Dr Filler sheds light on what's going on with the muscle spasm and he can give you help in getting over it. And I truly hope you have a much better day tomorrow and that leads to each day becoming better and better.

Donna

DAVID
I HAD SURGERY SEPT. 20 BY DR FILLER, WHAT YOU SAY ABOUT THE PAIN GETS BETTER THEN GETS WORST IS WHAT I HAVE HAD FOR THE LAST 4 MONTHS,SOMETIMES IT IS WORST THEN EVER, I GET NEW OR DIFFERENT PAINS, THEN IT IS BETTER THAN EVER. THE LAST 3 WEEKS HAS BEEN THE GREATEST CHANGES. FROM BEING THE WORST IT HAS BEEN , TO NOW THE LAST 3 OR 4 DAYS BEING THE BEST IT HAS EVER BEEN, BIG CHANGES SEEMS TO BE FOR THE BETTER. I WOULD SAY 75 -80% BETTER. WHAT DR FILLER TOLD ME IS THAT IT COULD GET BETTER , THEN WORST, THEN BETTER AGAIN. IT COULD GO AWAY RIGHT AFTER SURGERY, IT COULD TAKE 3-12 MONTHS,ITS NERVES HE DON'T KNOW & NOBODY ELSE DOES EITHER, ONLY TIME WILL TELL. BUT I WILL MAKE IT BETTER.
BY WHAT YOU SAY , IT SOUND LIKE HE GOT THE RIGHT AREA, WITH THE CHANGES YOU HAVE HAD.
THE WAY I LOOK AT IT IS , IT COULD TAKE UP TO 12 MONTHS TO HEAL AS GOOD AS IT IS GOING TO, SO ANYTHING LESS THAN 12 MONTHS IS A BONUS FOR ME.

Okay, no testosterone. I'm sitting here typing with a few tears(not from pain) streaming out of my eyes. Thanks so much for the very kind replies.

I brought work home last Friday so I'm working out of the house today. The pain is not awful but at least I can take my bits and pieces of Valium to keep the spasms in check until I hear from Dr. Filler. I sent his NP an e-mail last night and asked some questions and asked about mild muscle relaxers. I'll share what she says when I hear back.

As all of you know, as well or better than myself, the frustrating thing about this is that "it" is completely out of my control. I have a strong will, I'm intelligent, and I've always been able to overcome injuries and illness if out of nothing but sheer will. In this case however, I'm getting my rear kicked and kicked badly right now. It's frustrating and, in complete honesty, it's kind of scary. Okay Donna, that was it. That was the whine of the day and that's what I will limit myself to.

JLB, I read your initial posts and they troubled me. Your latest post just lifted me up through the clouds. THANK YOU! That's exactly the kind of news that this group, this man, needs.

I'm fighting folks. Historically, I've always enjoyed/treasured a challenge and this is the mother of all challenges for me. With God's help and the help of my wife and the help of my friends on here, I WILL WIN.

Chins up. Gotta get to work. Thanks so very much.

Your friend,

David

p.s. Anyone hear from Menzie or am I just missing a post since her daughter's visit to Dr. Filler?

What a great group of people. Although we're unlucky to have this nasty condition, we are very lucky to have met each other over this forum.

Anyway, I don't think Menzie has posted since her daughters appointment. Hopefully she will soon.

I have a question for surgery-recoverers. As far as pain meds go after surgery, what does Dr. Filler prescribe? I only ask because although I'm taking vicodin now, it doesn't really take the pain away completely and I want to be prepared to talk about different options when I see him next week. Does anyone else get little relief from vicodin and if so, what have you taken instead that actually works? It seems like different people are taking different things and I was just wondering why that is. My main goal is to get off of all medications as soon as possible. Thanks.

Hang in all.......take care today.

Leesa

Leesa,

Started with hydro-codone. It worked great for about a week and a half but I think it is what led to some severe nausea. Fillers' NP then switched me to Tylenol #3 and I have had no nausea. However, my pharmacist friend said Tylenol #3 actually is the more harsh of the two so now I'm wondering if it was me just coming off the Tramedol that I had been taking prior to surgery. I think it was filmfest who said that Tramedol was an absolutely horrible drug and I quit cold turkey, thus maybe leading to the nausea.

Tylenol #3 seems to work pretty well but I'm trying to get off of it to the very best of my ability. I'm now starting to substitute a regular Tylenol or Excedrin every other dose.

Based on my experience and a couple of other posts recently from people, also ask about muscle relaxers. I'm researching these as well and will let you know what Filler's office says about them. Currently using Valium but the same pharmacist said that Valium isn't a true relaxer, it is more of a tranquilizer. We'll see.

Hope that helps.

David

David - I tried to warn you to wean off those drugs! (See my previous postings on the topic on page 11 of this thread.) Quitting the ultram/tramadol cold turkey was the worst thing you could do!

Tylenol #3 is ridiculously inadequate for your level of pain. And you are trying to get off that??? There is something called the "pain Cycle" and it appears to me that you are unknowing doing everything to make the pain cycle worse, not better. Do you have any vicodan or perceoset left? Try taking one of those instead.

Muscle relaxants - Your druggist is right. Valium is not a true muscle relaxant. There are no true muscle relaxants! But of the drugs that may have an indirect effect on the muscles, Valium is by far the most effective at produicing an overall relaxing effect.

So you are looking for a drug that is less effective than Valium at relaxing muscles??? Sure Valium has side effects & is potentially addictive, just like the other drugs you have been given. But if you want any kind of relief from those horrific muscle spasms, take Valium & Percoset.

Why are you so hard on yourself? That you should just tough out the pain without drugs?? Your muscle spasm/pain cycle is so strong now, it is not simply going away on its own.