Piriformis release surgery, anyone???

Member

Hello,

Margie, thank you for the update. I was also on Neurontin for over a year, in the beginning it did help but then seemed to be useless. I upped the dosage considerably, but it did not help. I have a tens unit, it almost makes me OCD.....that's embarrassing.

I am anxious to hear what you learn with Dr. Barbaro's past patients. I wish you and everyone the best.

Donna, I too thank you for the positive input. I certainly don't want to live the rest of my life in this state, but would never choose something too risky to make things worse either......Sadie[/b][/i]

Member

Margie,

You said that you had a discogam and a nucleoplasty. Did that make a difference for you or was that a false diagnosis?

Do you have "sciatica" or burning butt pain or both?

The reason I ask is I am scheduled for a discogram next thursday (I have back/SI pain with this...it came on about 4 months after the burning searing butt pain started) and I am trying to be really cautious about the interpretation. I'm running out of diagnostic tools at this point...except, of course, biting it and going to CA for diagnostic purposes.

Thanks so much for sharing your story.

Julie

Member

Margie,

Sorry, one more question I for got to ask!

How many surgeries has Dr. Barbaro done to date?

Okay, I think I'm done for now. Wink

Julie

Member

Sadie, I would have to agree with the statement that in Southern Oregon Piriformis has probably never really been treated. I have taken my daughter from the borders of Ashland to the outskirts of Portland, and everyone kept ignoring it and looking at my like I was crazy. Dr. Filler has at least given us hope that it is indeed what I had thought for the last year. I believe my daughter spasmed her piriformis while putting on her backpack loaded with text books. She was 3 months post op from a fusion. She had the BMW of rolling backpacks, yet did not want to look dumb on the first day of school. I thinks she did some sort of twist which did a backward tortion to her muscle. She has been on Neurontin for 16 months, no help, Oxy barely does anything.

Today marks the seventh day since my daughter had her injection with Dr. Filler. Cautiously optimistic, I just want to say, that I appreciate this site. To hear everyones stories and experiences helps. David and Donna, thanks for being dedicated to your updates. You are critical in the sense that people are learning and thinking from your experiences. And now I can add Dr. H to the updates as well. The rest idea would have been awesome if it worked, but my daughter has been resting for 16 months with no changes. I hate rest LOL.

Member

Hi Julie,

Dr. Barbaro has been a very well respected neurosurgeon for over 30 years. He's done 18 piriformis surgeries. Sixteen were very successful. One was mildly successful and the other was not a success BUT with that particular one, Dr. Barbaro was trying to repair a botched piriformis release surgery that another doctor had done.

My discogram/neucleoplasty did nothing to improve the burning in my butt and down my leg (and into my foot) but it did help my back quite a bit. They thought that repairing the L4/L5 problem would alleviate my PS pain but, sadly, it didn't. I still have constant pain in my butt as well as the burning all the way down. It is worse when I sit or when I'm laying down. It's better when I stand.

Hope that answers your questions. Have a great weekend!

Margie

Member

Hi,

Just wanted to let people know that Wockhardt Hospitals in India may provide the answers you have been looking for. I am from Canada, and Dr. Filler quoted me the nice low price of 70 grand. I am getting the full work up and surgery in India for one tenth of that. Going for surgery tomorrow or the next day so I'll keep you all posted.

Member

Thanks so much to David and Donna for your encouragement. It meant so much to me and I am feeling better and better about making my appointment. Have to go because grandchildren are coming for a sllepover.

Bye for now.

Shirley

Newbie

Hi again everyone,
I go away for a while and it seems that so much has happened. I had been receiving e-mail notifications when people posted, but they stopped and I forgot to check in. Donna, I'm happy to see that you have recovered from your infection. David, I'm happy to see you're still kickin (maybe not literally yet though) after surgery. And it's nice to see an MD on here who can give us perspective both as patient and doctor.
I don't have much to update, except that my new pcm has gotten it into her head that I actually have Fibromyalgia and that my PS is now secondary. After asking for a referral to neuro, she instead is sending me to rheumatology to get a positive diagnosis on the FMS, so I can get all my other symptoms under control. I'm not sure that I really agree with her, but I am willing to try all aspects and she told me that the rheumatologist could refer me to neuro if they see fit.
The way I see it, my very acute and unending pain is causing depression and stress, which in turn causes widespread pain throughout the body and skin irritation. Of course I'm not a doc. Then again, if this gets my pain under control enough to once again attempt physical therapy and prevents me from having to undergo another painful and useless injection, I think I'll take it.
I hope everyone is having a low pain day.
Kayti

Member

Hey all.

Coming up on 7 weeks(this Tuesday). Yesterday, I took 2 Tylenol #3 in 25 hours. Feeling quite a bit better again even with more activity. Actually walking much more, getting out much more(errands, etc.) and even did a little upper body strengthening yesterday(Filler's NP said this was fine).

Still fighting butt spasms a little but it's so darn cold here right now that my whole body just spasms up when I go outside. I hate cold and it's making it harder to heal and stay out of spasm.

Oh well, just wanted to drop in real quick and report the highs are higher and the lows are not as bad.

We are thinking of all of you and hoping all is well. I think several have appts this week and we want to hear how these go. Please.

Your friend,

David

Member

Hi David:

Glad to hear you are feeling better and hope the good stretches get longer and longer. Summer will be here soon!

I see Dr. Filler tomorrow morning and will report back on what he says. I'm nervous but glad the appointment is finally here.

Hope everyone else is hanging in there. Have a good one.

Leesa

PS: Donna: I can imagine how hard it is to stay in touch now that you are feeling good but thanks for continuing to show there is hope out there.

Member

David, congrats on the higher highs. I am so thankful that you keep us all up to date. You give me hope for my daughter.
Leesa, goodluck tomorrow on your appt. Check out the skulls on Dr. Fillers desk. Quite interesting.LOL

We are now 9 days post 3 injections. Not much to note in the way of changes. Still hoping. I hope you all have a great Sunday. Smile

Member

Thanks Menzie, I will check out the skulls!

I think I said this before but, I had very little relief from the injections and not until around day 14. My leg pain has continued to get a little better but I'd have to say the butt pain is worse. Anyway, just food for thought.

Member

Leesa, am thinking of you and hope everything is positive after your long wait. Keep us posted.

David, so glad you are having some better days and the low days aren't as low. I so much appreciated your thoughtful message to me. I didn't realize that you had come home and then gone back for the surgery. I was wondering what is cold inTexas. I have lived so long in Canada that I tell my sister we consider the 30's to be warm.

Menzie I hope things start to turn aroundfor your daughter. You are such a supportive mother.

Donna, you are definitely our inspiration.

The friend who is supposed to come with me is coming over on Tuesday and I will find out when she can go to California. Then I will call and make my appointment. I am hoping I can use my air points as I have enough to fly 1st class.

I took a walk today and am hoping I don't have to pay too big of a price. David, it was about 15 degrees F..Lhuggable, you are lucky that walking is helpful. I would give anything tobe able to take long walks--18 holes would do me in-- I couldn't even do 9. Hope you are progressing.

Margie or was it Sadie. I also use a TENS and it is my life saver also. I use it almost all the time. That makes it possible for me to sit a bit longer and walk a little further. I couldn't do without it. I can't put it right on the piriformis because it becomes very aggravating but I wear it slightly above where the muscle is.

Bye for now. Thinking of all of you.

Shirley

Member

Menzie,

You are right, most doctors have little or no understanding or training or piriformis or any other pelvic nerve entrapment problems. I consider myself well trained and current yet I had only barely heard or piriformis before my neurosurgeon mention it to me almost 3 years ago. It is funny that every doctor knows and believes in carpal tunnel syndrome of the arm (which is just an impingement of the median nerve through the wrist), yet almost every doctor considers all sciatica to be coming from the spine and do not consider other etiologies.

Shirley, I do feel lucky compared to most people on this board. As bad as my problem seems sometimes, don't think it is as bad as most here.

Member

I would like to educate people on this forum about MD's, although many of you have probably figured this out already. This also has nothing to do with the MD's mentioned on this board, but just MDs in general.

I just want people on this forum to understand that the diagnosis made and the treatment can have as much or more to do with type of MD you see as the real etiology of your problem--especially with problems like ours.

You also need to sometimes just "follow the money" as well (ie. MDs prefer to do proceedures over just take a history, do an exam, because that is where the money is, in doing proceedures).

Let me give an example to illustrate: If a 50 year old male with left arm pain presents to:

a neurologist--he is likely to get nerve conduction studies of his arm.

a a cardiologist--an EKG, labs, maybe a stress test of his heart.

a pain MD--steroid/marcaine injections in his neck

You get the idea, so be careful who you go see and what diagnosis is made. There are many MDs who have the best intentions for patients but even they are unaware of their own "conformational bias"--where they take the findings of an H&P, labs, xrays, etc and "fit" these findings into a diagnosis that is something they are comfortable with and treat routinely.

There are also MDs that are just lazy, don't really try to determine the patients problem, they just want to do their little proceedure and go home.

So be careful, if for example, you go see a surgeon who does alot of spine operations, he might find you need one to. And maybe you really do, but just remember where he is coming from.

Piriformis release surgery, anyone???

LIFEFORM SOCIAL COMMUNITY NETWORK