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.
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.
I had piriformis surgery about 30 months ago.
Dr. Dieter Mortier of Veurne, Belgium performed the surgery. I am Canadian and had seen 2 other piriformis "specialists" to diagnose and quote the cost of surgery.
Dr. Mortier proclaimed a 90+% rate over 550 surgeries, with only a single negative result (a mistake he admitted was his fault). Basically you got better or if you were one of unlucky 10%, stayed the same.
I got 10 times worse and spent the next 18 months wishing I were dead 18 hours a day (thank god sleeping pills work). Yeah, that's right, suicidal and I've been through many other catastrophic sports injuries and surgeries, but no 24 hr period in my life has come close to the pain I go through EVERY 24 hrs now.
My point? Maybe I'm the unluckiest guy in the world, or maybe these surgeons believe their own BS. I'm a bright skeptical guy. I did all the research, all the tests, all the non-invasive surgery avoiding treatments. My surgeon said all the right things, did all the right tests and had the overt manner of a thoughtful confident surgeon.
Then I had the surgery and my life forever changed. I knew immediately post op that something was terribly wrong, but rather than investigate or even sympathize, I was treated as though I was an over anxious sissy.
And then about ayear after the surgery it finally dawned on me. At this point, I'm thinking the disaster was just my bad luck ... a one in a million surgical nightmare, but then I realized - no one from his office, or the doctor himself sent a single follow up email (we had numerous contacts pre-op).
How could he quote those outcome statistics without any patient follow up? Was I both the only negative outcome AND the only patient not followed up? Astronomical odds.
Why am I writing this? I consulted all kinds of blogs and other resources pre-op. Not one since the surgery until today. I'm a fatalist. What happened, happened. Thought many times about railing against this surgeon, but what good would it do me?
My personal beliefs in this matter, almost 4 years after starting this journey are as follows:
1. Don't have this surgery unless you believe you have exhausted every option and feel nothing could be worse and that you have no choice but to proceed with surgery.
2. See at least 3 surgeons, and pick the one you believe in the most, irregardless of cost - your life is at stake. Rob a bank if you need to.
3. Hope your god is better than everyone else's cause your gonna need to get lucky.
My iPad is dying so I'll sign off. I wish you all the very best of luck, cuz I'm afraid you're going to need it.
Another Not So Polite Canadian
Dr. Dieter Mortier of Veurne, Belgium performed the surgery. I am Canadian and had seen 2 other piriformis "specialists" to diagnose and quote the cost of surgery.
Dr. Mortier proclaimed a 90+% rate over 550 surgeries, with only a single negative result (a mistake he admitted was his fault). Basically you got better or if you were one of unlucky 10%, stayed the same.
I got 10 times worse and spent the next 18 months wishing I were dead 18 hours a day (thank god sleeping pills work). Yeah, that's right, suicidal and I've been through many other catastrophic sports injuries and surgeries, but no 24 hr period in my life has come close to the pain I go through EVERY 24 hrs now.
My point? Maybe I'm the unluckiest guy in the world, or maybe these surgeons believe their own BS. I'm a bright skeptical guy. I did all the research, all the tests, all the non-invasive surgery avoiding treatments. My surgeon said all the right things, did all the right tests and had the overt manner of a thoughtful confident surgeon.
Then I had the surgery and my life forever changed. I knew immediately post op that something was terribly wrong, but rather than investigate or even sympathize, I was treated as though I was an over anxious sissy.
And then about ayear after the surgery it finally dawned on me. At this point, I'm thinking the disaster was just my bad luck ... a one in a million surgical nightmare, but then I realized - no one from his office, or the doctor himself sent a single follow up email (we had numerous contacts pre-op).
How could he quote those outcome statistics without any patient follow up? Was I both the only negative outcome AND the only patient not followed up? Astronomical odds.
Why am I writing this? I consulted all kinds of blogs and other resources pre-op. Not one since the surgery until today. I'm a fatalist. What happened, happened. Thought many times about railing against this surgeon, but what good would it do me?
My personal beliefs in this matter, almost 4 years after starting this journey are as follows:
1. Don't have this surgery unless you believe you have exhausted every option and feel nothing could be worse and that you have no choice but to proceed with surgery.
2. See at least 3 surgeons, and pick the one you believe in the most, irregardless of cost - your life is at stake. Rob a bank if you need to.
3. Hope your god is better than everyone else's cause your gonna need to get lucky.
My iPad is dying so I'll sign off. I wish you all the very best of luck, cuz I'm afraid you're going to need it.
Another Not So Polite Canadian
Not so Polite Canadian...
Thank you for your honest write up. Unfortunately I've heard similar stories about every doctor...Filler, Dellon, etc.
Fundamentally the problem with sciatic nerve, cluneal nerve, or pudendal nerve compression is...surgery may not really address the problem. If the nerve is compressed by a muscle or tendon damage, then even after you remove the source of the compression, the nerve may continue to be swollen or sustain damage it it's covering. If the nerve is swollen or damaged, it no longer slides freely in it's sheath, it rubs, and this rubbing causes pain and loss of function.
The muscle or scar tissue that causes the inflammation maybe now be gone but the malformation of the nerve inside it's sheath remains. This is my totally non technical, amateurish understanding of the problem and could be totally wrong!
Dr. Hal Martin has published papers recently that talk about the importance of nerve kinematics...his protocol forces physical therapy and nerve glides that cause the nerve to become released inside it's sheath again, and prevent the formation of added scar tissue post surgery. Who knows how important that kind of physical therapy is.
Thank you for your honest write up. Unfortunately I've heard similar stories about every doctor...Filler, Dellon, etc.
Fundamentally the problem with sciatic nerve, cluneal nerve, or pudendal nerve compression is...surgery may not really address the problem. If the nerve is compressed by a muscle or tendon damage, then even after you remove the source of the compression, the nerve may continue to be swollen or sustain damage it it's covering. If the nerve is swollen or damaged, it no longer slides freely in it's sheath, it rubs, and this rubbing causes pain and loss of function.
The muscle or scar tissue that causes the inflammation maybe now be gone but the malformation of the nerve inside it's sheath remains. This is my totally non technical, amateurish understanding of the problem and could be totally wrong!
Dr. Hal Martin has published papers recently that talk about the importance of nerve kinematics...his protocol forces physical therapy and nerve glides that cause the nerve to become released inside it's sheath again, and prevent the formation of added scar tissue post surgery. Who knows how important that kind of physical therapy is.
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
Bye for now.
Shirley
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
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
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
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
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.
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.
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.:-)
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.:-)
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.
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.
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
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
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.
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.
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.
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.
Hi Dr. Huggable and all forum members.
I wanted to say hello and ask for advice, if anyone would live to give it.
Huggable, your original description of your pain sounds familiar. Like you, I'm 55, I had pain in my lower pelvis for almost ten years, aggravated by sitting, but no problem walking and standing. My specialist thinks it was proximal hamstring tendinopathy. I walked and walked for decades, just being careful to avoid steep hills and sitting down. I played golf and more.
Like I said..10 years it was stable. Then last year it then went into a downward spiral, where the pain seemed to "transition" to my sciatic nerve. What actually happened was, I accidentally sat on the edge of a foam pillow, that poked me right in that sensitive spot. Then It stopped being a dull ache and became an electric, horrifying pain that lasted for nights on end, causing all the local pelvic muscles to cramp, along with foot drop and loss of sensation in my foot.
Apparently the hamstring tendinopathy is one of the other causes of lower pelvis entrapment, in addition to the piriformis muscle and obdurator internus muscle which you described. Maybe they are codependent.
Now my lower pelvis has gotten so generally inflamed that I can no longer walk at all...I'm bedridden, with only `short bouts of standing. Even a few minutes of walking causes pain so horrific that I'm bedridden for days afterwards. Can't get any meaningful exercise. Can't swim.
I have not gone to Dr. Filler or others (I was referred to Dr. Hal Martin in Dallas) because the other neurosurgeons I spoke with said, the success rate for surgery was very low for situations as advanced as mine.
I'm pretty conflicted whether to attempt the surgery. On one hand, my quality of life is non existent. Can't work, exercise, and barely visit the toilet. Left gluteal muscles almost completely atrophied...can't even stand on that bad leg, it will no longer support my weight.
I'm lingering in bed for the long months, at this point, just waiting for my life to end.
On the other hand, I don't want to add even more pain on top of this bad existence...if I stay immobilized in bed, or standing straight up and down, I can avoid pain. If I get surgery that fails, I will have pain even when in bed. I might linger here for 20 years before I finally fade away; I don't want to linger in continuous pain.
Anybody who has an opinion, I would love to hear it. If you faced 20 years as a bedridden invalid, would you risk surgery that might fix your problem, but also, might leave you a bedridden invalid in pain?
Jim
I'm so sorry to hear about the injury and pain and the effects it has had on your life. I have no idea if you can travel. But, if you can, a strategy might be to get evaluated at UCSF. They do dynamic ultrasound that images the muscles and nerves as the leg and pelvis moves. Maybe a new emg and neurogram as well. more information about your condition may make the surgery decision easier.
Dr. Huggable
Thank you for your recent and prior posts. This is something I've been struggling with from the very beginning, getting a diagnosis that matched the doctor's area of expertise and having a sinking feeling all along the way that that's exactly what was happening. It's nice to hear someone else say it. Every doctor I went to had a different idea of what my problem could be and like you said, it matched their area of expertise. Luckly I saw an ortho surgeon who said there's nothing wrong with your back (after many months of different doctors telling me there was) and he was straight with me and sent me to Dr. Filler. I realize certain tests need to be performed to rule things out but for instance I had 2 steroid injections for my "back" problem prior to Dr. Filler that I now know were completely unnecessary. VERY frustrating.
Anyway, thank you and please keep us posted on your recovery.
Leesa
Thank you for your recent and prior posts. This is something I've been struggling with from the very beginning, getting a diagnosis that matched the doctor's area of expertise and having a sinking feeling all along the way that that's exactly what was happening. It's nice to hear someone else say it. Every doctor I went to had a different idea of what my problem could be and like you said, it matched their area of expertise. Luckly I saw an ortho surgeon who said there's nothing wrong with your back (after many months of different doctors telling me there was) and he was straight with me and sent me to Dr. Filler. I realize certain tests need to be performed to rule things out but for instance I had 2 steroid injections for my "back" problem prior to Dr. Filler that I now know were completely unnecessary. VERY frustrating.
Anyway, thank you and please keep us posted on your recovery.
Leesa