Piriformis release surgery, discussion and information

Hawaii girl,

My heart really goes out to you. Dr. Filler's office really needs to be more professional and on top of the after surgery care. People in recovery from this type of surgery need a lot of post op support and its appearing that he's not always there to give it. Big bummer. Its a huge mark against them when people are deciding about surgery. But worse for you is not being able to get answers and to begin to feel like there are none.

I'm praying for you and would like to reach out over the miles and give you a big long hug. Sounds like you need one and certainly deserve one. Hang in there and keep hoping that your answer will come.

Your friend,
Donna

Hawaiigirl: Your situation is so upsetting. Perhaps you should tell Dr. Filler about this forum when you actually talk to him and let him know there are negative comments about his follow up care and the staff. This forum is basically an advertisement for his office and if he knew you (and me and others) have shared dissatisfaction he might be motivated to get things in order there. I d like to continue to believe he is skilled in his work and do but, you are right, the service isn t so great. I d give him a chance to address your recovery (or lack of) and I truly hope he is able to give you some answers. You asked this of Shirley but just my two cents worth I met and have spoken to Ever quite a few times. He s very responsive (to me anyway!). Maybe you could even speak to him if your phone appointment is delayed with Dr. Filler and explain your situation (not wanting to wait 2 weeks or more for a phone consult). I don t know how much pull he has but it s worth a try since he seems to call me back right away. Please don t lose hope. I understand why you would but it s so important not to give up. I m sure you know this but, make a list of questions for him so you don t forget to ask anything .it would be horrible if you hang up and realize there was something you forgot to ask. Take whatever you have to take to ease the pain. Medication sucks but better to get some relief - otherwise you will completely lose your mind. Leesa

Thank you Leesa and Donna! Very kind words and I sure need them right now. Donna I felt the hug!
I will definetly have alist of questions for him, I asked them in the e-mail and was shocked with the "make a phone appt" reply. He can do whatever he wants, he could have said I'll pull your chart and call you back, or have Ever call me or e-mail. He could have offered encouragement, said, don't worry I see things like this sometimes.
In the first e-mail when I explained my situation and he offered the steroids, he said sometimes these things turn around with treatment. When I wrote him back, asking him to at least answer my questions and what is this treatment, was it just steroids, thats when I got the phone appt comment. Therefore , Dr. Filler is the one making me wait, not offering help or hope, not the staff. He knows my situation, yet chooses to put me off until there is a paid phone appt.
I have spoken to Ever about this and he thinks I should just hop on a plane and come back, Oh, yeah, thats no problem.... He seems nice and caring on the phone but doesn't know what to say or do with a problem situation . I don't blame him he is new. I was just curious of others impression who actually met him,if they thought he was sharp or what.
I'm really frustrated and I do blame Dr. Filler, like I said, he is aware yet does nothing to help, knowing full well it takes time to get a call with him. I was clear in my original e-mail to him how bad this was and I needed help. Well, there it is, phone appt. :( I truly hope none of you have a similar experience. After 4 years of this and now my last hope, surgery, actually making me worse I have truly lost hope. Thanks for the support and hugs across the sea. hawaiigirl

Howdy!

Although raised just north of Atlanta where no one says howdy, I did attend and graduate from Tx A&M where everyone says howdy. A&M is widely known as the friendliest campus in the nation and if you visit, you will be bombarded with howdys.

Margie - Prayers and hopes sent! Actually been praying prior to today. It's done now and we can't wait to hear from you.

HG - I'm so sorry and we've had some recent problems with Dr. Filler's office. When it happens, I can get pretty confrontational and have reminded them that I have spent tens of thousands of dollars with them and have earned their prompt response to a question or request. I got my point across. Beat on them HG and get their attention. I don't know if you have met Jodean but she is a very no nonsense go getter in their office. You might try talking directly to her as she tends to have Filler's ear. It's absolutely ridiculous and disgraceful and they need to know they are being talked about on the web. I will mention this next time I talk to them. Not about you directly but that we are getting very concerned about the drop in responsiveness. That should make their ears perk up as our bill is not paid yet. We are thinking of you and wish there was something/anything we could do to help.

Feeling much better here and I didn't kill the boss or the pup. The pup was never in danger. Can't say the same for the boss.

LOL, butt energy prayer.

I thought I was the only twisted person on here.

Very funny and made my day. I have no doubt it will bring a smile to Margie's face as well.

I'm just wondering if she or her doc felt it when the prayer was delivered?

HG,

I am so frustrated for you. Please feel free to vent away on here. I know how frustrated you are and I just wish I could do something to help.

First things first, you have GOT to get your pain at least to a tolerable level. Life is miserable with pain and I hope that you can get it under control, whether it be heat, ice, opiods, mexican hat dance, TENS, whatever. Adding pain onto your anxiety and frustration with Dr. Filler and the surgery and I can see where you are miserable. Do you have a family doc at home that is on board with you and is willing to help you out during this "waiting period"?

I really appreciate your honesty on this forum. All of us are looking for a miracle and for us still contemplating it (at least for me) I need a dose of reality from time to time to remember that this IS surgery and there are no guarantees.

One more question, and this one sucks, but are you financially able to go back out there for reevaluation? Saying that, I realize that you will have to pay for the office visit and further tests, which makes it cost even more. Just wondering if you had to, would you be able to go back?

All I can offer is all the support in the world for you. Please hang in there. MANY MANY hugs.

Take care,
Julie

Julie and David, As I write this standing at the computer(sitting is not an option)crying buckets of tears . I just want to say thanks. I know everyone feels for me and it means so much! Julie, it would be a super hardship to go back. Airfare, hotel, taxis, his outrageous office visit charge, another MRI, then what? His injections never worked for me and from what I have gathered not for anyone on this forum. I do not have a doctor here as my doctor of 20 years just retired . Hes the one who gave me the very helpful blind office steroid injections. but I'm thinking of going to see the ortho guy here who saw my husband thru a badly broken arm last year, I will ask Filler if he thinks thats an option, as theses guys do them all the time especially for shoulder pain. Until I actually speak to him I feel I shouldn't do it even though I am so tempted for relief. I won't do Fillers injections again.
I just fear this is not just inflammation since it was not helped at all by the steroids, but possibly something that went wrong from the surgery itself as the pain is in the same area only much much worse. Another operation would bankrupt us. my husband feels so mad and helpless seeing me in such pain after we just agonized over the original decision for surgery. My husband never liked Dr. Filler from the get go so hes just totally not open to another surgery, but absolutely feels we should be taken care of after putting our faith and trust and a huge amount of money on his promises. I have paid about half my bill with him and will not be paying a dime more if this is left unaddressed. I have a nurse friend who thought a tens unit would be good in the meantime, anyone know of a good model I can order over the net? Gotta go now, I have a 17 year old son that will be home soon and I need to go fix myself up. I don't like to have him see me cry, I coulld'nt bear to have his memories of me be like this so I always put on my happy face when he is home,which is not a lot, did I mention hes 17? Thanks for listening HG

Misc thoughts & answers -

Myofascial Release therapy - so much depends on the training & skill of the therapist. Some Massage Therapists do a version of Myofascial Release that is very Deep Tissue & painful. I think anyone who has been in chronic pain for years does better with gentle form of Myofascial Release rather than the painful, forceful type.

Hawaiigirl asked about RF (Radio Frequency Ablation). It is a technique used to treat pain by burning the nerve endings. It is an expensive, painful treatment (Usually 1 or 2 days of increased pain) If it works, the damaged nerve endings can't send pain signals. But the nerves endings regenerate after about 6 months and then you can feel pain again.

I don't know if it is successful in reducing SI pain. But according to the Yahoo group's survey, it only reduces PS pain 20% of the time.

Hawaiigirl - It is time to raise hell at Filler's office. Being patient isn't working, is it? Scream at them about the pain level & demand something be done. Starting with Dr. Filler talking to you today!

I am very upset you are in so much more pain now than prior to the surgery. Feel free to scream!!(but not at your husband) I am silently screaming with you. Hugs & sympathy, Mary

H'girl, jsut reading your messages re: Fr. Filler's disregard has sent my blood pressure up and makes me furious!!! If he does surgery on people and there are complications then he shouldbe more available for followup. I feel so angry for you. Did Dr. H ever get to talk to him?I also feel heart broken at your situation. You have put up a brave front but this is really too much. Like David, I have spoken to Jodean Peterson before and she was very nice but I don't really know what her function is. She told me she helped Dr. Filler wiht the Neurography research and I got hold of her by accident one day when I phoned the Neurography Institute. Kim, the admin assistant seems to know when all the appointments are and maybe she could move you up. She has been very helpful to me and apologized for my not receiving that call, which incidentally I never received. Cece was the one who assisted Dr. Filler when I went in for my injections and she seemed very nice but obviously is not organized enough to follow through with telephone appointments.

I am vey concerned when I keep hearing about the failing servie in Dr. Filler's office including him. It makes me wish I had looked more into Dr. Barbaro. I think Dr. Filler has gotten too busy and has reached a point where he can't keep up. It seemed to me that earlier comments were more favourable and he was more available even with you, David. David, you are very good at telling it how it is and I think you should tell them about the forum and the negative comments. I am very disappointed in the disorganization of his followup and others in the office.

H'girl it makes me want to tell him if I have surgery not to touch my superior gluteal nerve or the ischial tunial (sp?). It is all experimental it seems to me. I wonder if Dr. Barbaro goes into these other nerves when he does a pirivormis release.

Hang in and know you have a great group of supporters. Get support wherever you can and don't let this slip into a depression. Chronic pain can do that if we are not careful. I, too send you lots of hugs.

Shirley

Jodean schedules the surgeries. I called her and she put me thru to Kim who absolutely would not move up my appt. I just e-mailed Ever. I hope he calls me tommorrow but in the past he has not been very good at calling but does answer e-mail. This is so disappointing. HG

I just read everyones posts. The other day I posted and said it had been very quiet, now it appears it is very active.

HG: Sorry to hear of the problems and issues you are dealing with, and the crazy pain. I can only stop and ponder what I am doing with my daughter. I am very terrorfied at the prospect of her being worse. I would die!!!!

Leesa, glad to hear you are doing better, and please take the time you need to give yourself the best chance at healing.

To all who are experiencing the horrors of this pain, I consider you all warriors. I pray everyday for you all. I am slightly scared that my daughter may be worse.

Good wishes and super recovery to our surgery girl. I look forward to hearing about your surgery. Menzie

Read through the posts tonight. Really disturbed at the increasing # of posts describing problematic surgery with Filler. One thing I've never understood is why he decided to patent MR neurography in the first place. It would seem that if the technology really was helpful, he'd have found a way to license it on favorable terms to at least teaching hospitals around the country to get it in more hands.

HG: I don't know your situation but I understand the unrelenting pain. I'm new here but just a few thoughts. Go see a good physiatrist and pain specialist in your area pronto. Talk to friends, your internist, etc and find a good one near you. There's a wide range of pain killers out there - I prefer Ultracet for any muscle/nerve pain, but that's me. At this point, it sounds like you've lost confidence in Filler - if you go back and he says more surgery is needed, you have to ask yourself if you would actually let him do it. The problem is that when pain in nawing and unrelenting, you can't think straight and make reasoned decisions. Once you get the pain under control, you can then decide how best to proceed. But don't give up!

All: I mentioned when I do any hamstring stretch, my ham and butt burn later sometimes all day. My PT is more convinced now of some sort of adhesion that is causing the Sciatic nerve to get stuck. Where, she's not sure. So she's had me do a new sciatic nerve release technique I thought I'd share - it's called nerve "flossing". Basically, you sit on a chair with the affected leg propped up on a low stool. Bend the knee slightly so there's no pressure on the ham. Then slowly point the toe all the way forward and at the same time slouch and bring the head to the chest. Then straighten back up, sit up tall and bend the foot back toward your body. Then repeat. Back and forth, rhythmically. Not too fast, not too slow. Idea is to get the nerve to 'floss' or move back and forth rather than just pull on it statically like I was doing in a typical ham stretch. So far, so good. No burning in the ham or butt after 2 days of doing this.

Mark

Mark, how long have you been on ultracet? Did you feel weird on it at first? Have you tried vicodan? I hate it, I feel nauseus and can only take it at night because I can't drive on it, so daytime is worse for me. I'm really scared to stretch or massage the spot like I could before the surgery, the couple times I tried it got way worse. Prior to surgery a deep butt massage calmed it down but it always came back and he said he could fix it........I trusted him but you are right I have lost confidence. Not sure where this will lead, I did the surgery to AVOID being on painkillers, I never took them prior to surgery. Mark, stick with the pt and I agree with you on the MRI. He owns the place where you get them done.FYI HG

HG, I second Mark on getting some pain control. It is so hard to think clearly and begin to search for the light at the end of the tunnel when you are in pain. Everyone has a different med that works better for them but I also urge you to find a good physiatrist, PM, family doc, etc to see if they can help you get your pain under control with a med that works well for you. It has made a huge difference for me. For the first ten months of this (it's been a year now) I refused pain meds and two months ago I gave in and got lucky and found a med that works well for me. Takes some trial and error, but you need some relief...at least until you can begin to start getting this settled.

I looked up on amazon. com for TENS units and you can get one for less that $100 on there. I love mine. No, I ADORE mine...to the point that I even named her "Ellie" (sick, I know.) With Ellie I can sit down, ride in the car for longer, WALK a little longer. Not a cure but helps a whole lot with the burning searing butt pain. It's worth giving a try. Just gotta get used to the wires hanging out of your pants!

Let us know if you make any progress with getting help from Filler's office today. You DESERVE the best aftercare. And, like David said, after the amount of $$ you have put down, you are entitled the best care.

Take care,
Julie

HG: I've been taking Ultracet (37.5/325) on-and-off since last June. No issues, side effects. Ultracet is a mixture of Tramadol + Tylenol. The mix of the 2 work synergistically so that the analgesic effect is greater than either alone. 1 usually works fine for me for several hours; 2 pills if a really bad day. You have to be careful not to add Tylenol based products since you're already getting Tylenol in this mixture. There's also pure Tramadol called Ultram for ppl who don't want the Tylenol. Tramadol is a kind of odd, but very helpful analgesic. It's called a non-opiod narcotic whereas something Vicodin is an opiod. You can Google it to read more about how it works, etc. Interestingly, it's also used by Vets for pain in animals especially dogs. It's been around a long time and is now generic. It's also claimed to be non-addictive unlike Vicodin although there have been reports of people abusing it. The DEA labels it as a non-controlled substance (unlike Vicodin) although you do need a script for it.

It tends to be very helpful for nerve/muscle based pain because of the way it acts on the brain. It doesn't just "kill" the pain as Vicodin does, but it also affects serotonin in the brain similiar to an anti-depressant which also helps reduce the sensation of pain.

But, even having said all of this, please don't grab some from a friend or someone and "try it out". Go talk to your internist or family doc and ask him about it. You may find he or she is more than happy to let you try it out under their supervision. You also have to be careful not to mix it with SSRIs like Zoloft, etc as it can cause severe reactions. Again, why you need to talk to your doctor who knows what meds you are on and any side effects they cause.

I don't like painkillers either and try to minimize them as much as possible. But you also have to realize that with chronic pain, the brain gets accustomed to the constant barrage of nerve pain and nerve pathways get adjusted because of this. Thus why people who have long standing pain, still feel pain even after the problem is fixed. So letting chronic pain "go" to tough it out is not a good thing to do. Getting hooked on stuff is also really bad. Talk to your doc, etc and explain your concerns and see if he thinks something other than Vicodin would help you. Keep at it with his supervision until you find something that works.

A final note here - you can also talk with your doc about getting a low dosage script for Elavil. This is an antidepressant that is used to treat chronic pain. I take 10mg at night only. This is far below what is used to treat actual depression. Again, this is standard pain management therapy that any pain doc would go over with you. Mine did with me.

Hope this helps,
Mark