Thank you very much. I hope you are still recovering succesfully.
It's been just over a month since I had the surgery and I'm doing great. Last week I had a 2 day meeting in a city 2 hours away. The trip that used to cause huge amounts of pain was pain free and pleasant. Sitting all day for 2 days was......well it was a bit uncomfortable(what marathon committee meeting isnt?) but other committee members stood to stretch long before I did!
I've been walking a fairly rapid pace 30 minutes 2 times a day and that doesn't cause pain. When I've done a lot of standing or walking, my right thigh feels a bit of pain. I'm lifting heavier things with less pain than the first weeks after surgery. My very caring and loving husband protects me from trying to much, so I'm not pushing anything. I certainly don't want to do anything that would put me back to where I was before surgery.
Since Dr Filler had said 3-6 months for recovery, I feel really good about where I am. I am no longer taking any medication at all. That is really something to celebrate!!!
Here's hoping each of you can write a similar note sometime in the near future!
Donna
I've been walking a fairly rapid pace 30 minutes 2 times a day and that doesn't cause pain. When I've done a lot of standing or walking, my right thigh feels a bit of pain. I'm lifting heavier things with less pain than the first weeks after surgery. My very caring and loving husband protects me from trying to much, so I'm not pushing anything. I certainly don't want to do anything that would put me back to where I was before surgery.
Since Dr Filler had said 3-6 months for recovery, I feel really good about where I am. I am no longer taking any medication at all. That is really something to celebrate!!!
Here's hoping each of you can write a similar note sometime in the near future!
Donna
Donna,
Did you have the burning searing "bursitis/tendonitis" type pain in your butt? Is that type of pain something that is relieved/resolved with Dr. Filler's surgery? What did your piriformis pain feel like (not the nerve pain but the butt pain)? And, finally, another question, did you have a lot of muscle dysfunction that went along with all of this? I have tremendous muscle inhibition, inflammation, misfiring, tight/spasms, from my paraspinals down to my quadraceps on my right. Most of my nerve pain is on the left. Go figure.
I think Dr. Filler is my best bet. It's going to take a while to come up with the funding,. My SI's are messed up, I think my pelvis is screwed up for whatever reason and that is what is causing this. I am an endurance athlete and rock climber...and for whatever reason I was susceptible to this type of injury and here I am. Now it's time to try and find the pain generators, hence the diagnostic injections. What I think may happen is that I have to get my SI under control and then move on to the piriformis problems. I wonder if taking it in reverse order (treat piriformis, then SI) might be a better option...I don't know. Basically, I think somebody had got to do something surgery wise to help me because as much as I want, my body is not going to resolve this on its own. I wish I could get all the diagnostics initially done by Filler, but I just can't afford it yet.
I am so glad you are doing better. You are fortunate, blessed and so wonderful to share your advice and experience with us.
Thanks so much,
Julie
Did you have the burning searing "bursitis/tendonitis" type pain in your butt? Is that type of pain something that is relieved/resolved with Dr. Filler's surgery? What did your piriformis pain feel like (not the nerve pain but the butt pain)? And, finally, another question, did you have a lot of muscle dysfunction that went along with all of this? I have tremendous muscle inhibition, inflammation, misfiring, tight/spasms, from my paraspinals down to my quadraceps on my right. Most of my nerve pain is on the left. Go figure.
I think Dr. Filler is my best bet. It's going to take a while to come up with the funding,. My SI's are messed up, I think my pelvis is screwed up for whatever reason and that is what is causing this. I am an endurance athlete and rock climber...and for whatever reason I was susceptible to this type of injury and here I am. Now it's time to try and find the pain generators, hence the diagnostic injections. What I think may happen is that I have to get my SI under control and then move on to the piriformis problems. I wonder if taking it in reverse order (treat piriformis, then SI) might be a better option...I don't know. Basically, I think somebody had got to do something surgery wise to help me because as much as I want, my body is not going to resolve this on its own. I wish I could get all the diagnostics initially done by Filler, but I just can't afford it yet.
I am so glad you are doing better. You are fortunate, blessed and so wonderful to share your advice and experience with us.
Thanks so much,
Julie
Hi all,
Still scheduled for Dr. Filler surgery. I'm talking to his NP today because I have some questions. Maybe someone else can answer these based on their experience.
I was beginning to feel much better. However, I went on my normal walk last week and really stepped up the pace. My hips at the greater trochanter joint became extremely sore on both sides. When this happened, my nerve pain increased dramatically.
I'm really, really beginning to wonder if my PS is not being caused by trochanter bursitis. Almost a week later, the hip joints are still a little sore. Another odd issue is that when I apply heat to the hips and the upper buttocks(Therma Care patches and wraps), the pain(hip and nerve) is reduced dramatically.
I asked Dr. Filler about this during a telephone meeting and he said it was possible that the bursitis is stirring the PS. I aksed him about hip injections and he said I could try. However, I'm worried about these causing a delay in the surgery. Conversely, I would think they should be tried before the more extreme surgery try.
Bottom line: I kind of feel stuck in a chicken/egg issue. Is the PS causing the bursitis or is the bursitis causing the PS?
Question: Does(did) anyone else have pain in the same hip joint(s) and did you try injections? If you did receive injections, did they calm down the PS?
Donna, glad everything is going so well. I'm so sick of this stuff. I used to be so active and fit and I miss my life. Also, do you feel any different in terms of hip weakness or changes in walking gait, etc.?
Thanks for any help.
Still scheduled for Dr. Filler surgery. I'm talking to his NP today because I have some questions. Maybe someone else can answer these based on their experience.
I was beginning to feel much better. However, I went on my normal walk last week and really stepped up the pace. My hips at the greater trochanter joint became extremely sore on both sides. When this happened, my nerve pain increased dramatically.
I'm really, really beginning to wonder if my PS is not being caused by trochanter bursitis. Almost a week later, the hip joints are still a little sore. Another odd issue is that when I apply heat to the hips and the upper buttocks(Therma Care patches and wraps), the pain(hip and nerve) is reduced dramatically.
I asked Dr. Filler about this during a telephone meeting and he said it was possible that the bursitis is stirring the PS. I aksed him about hip injections and he said I could try. However, I'm worried about these causing a delay in the surgery. Conversely, I would think they should be tried before the more extreme surgery try.
Bottom line: I kind of feel stuck in a chicken/egg issue. Is the PS causing the bursitis or is the bursitis causing the PS?
Question: Does(did) anyone else have pain in the same hip joint(s) and did you try injections? If you did receive injections, did they calm down the PS?
Donna, glad everything is going so well. I'm so sick of this stuff. I used to be so active and fit and I miss my life. Also, do you feel any different in terms of hip weakness or changes in walking gait, etc.?
Thanks for any help.
Hi everyone,
Okay, I'm all set for the surgery. I have filed a 36 page appeal to my insurance company to get him treated as in-network but I'm going to do it no matter what they say.
Spoke with Filler's NP and she said the bursitis would likely resolve after the release. In any case, she said I was free to get hip injections anytime before or after the surgery if I need them.
Bottom line: I am ready to get this done. I've had enough. I know it won't be fun but I'm ready. I haven't had this long(5 months) so I'm very hopeful that my nerve recovery won't take as long as some. Nevertheless, I'm prepared for it to take longer.
Like Donna, I will keep everyone up to date regarding how this goes. If you are inclined, I would appreciate any and all prayers. I'm a grown man and have seen and been through a great deal in my life but this just flat scares me. No shame in admitting this. I have never had surgery before so this is new ground.
Okay, I'm all set for the surgery. I have filed a 36 page appeal to my insurance company to get him treated as in-network but I'm going to do it no matter what they say.
Spoke with Filler's NP and she said the bursitis would likely resolve after the release. In any case, she said I was free to get hip injections anytime before or after the surgery if I need them.
Bottom line: I am ready to get this done. I've had enough. I know it won't be fun but I'm ready. I haven't had this long(5 months) so I'm very hopeful that my nerve recovery won't take as long as some. Nevertheless, I'm prepared for it to take longer.
Like Donna, I will keep everyone up to date regarding how this goes. If you are inclined, I would appreciate any and all prayers. I'm a grown man and have seen and been through a great deal in my life but this just flat scares me. No shame in admitting this. I have never had surgery before so this is new ground.
swlaaggie:
No need to be ashamed. I think we're all a bit freaked out. I saw Dr. Filler yesterday, had a neurography today and am scheduled for an injection monday. I too just want the surgery to be done with this but I guess I need to make sure I actually have PS first! Please keep us posted on your surgery/recovery. Hang in there.
No need to be ashamed. I think we're all a bit freaked out. I saw Dr. Filler yesterday, had a neurography today and am scheduled for an injection monday. I too just want the surgery to be done with this but I guess I need to make sure I actually have PS first! Please keep us posted on your surgery/recovery. Hang in there.
I'll be praying here.
Surgery in general is not fun, but you will be under the care of a very competent surgeon. Are you doing bilateral?
Good luck with your insurance.... even after I spent two months getting everything set as "participating" my insurance has only paid the non-participant rate so far. So, we've spent more time calling them, where we've been assured its just a "simple mistake" which will be corrected soon. Be sure you get the hospital AND the anesthesiologist included as well, since they all bill you separately!
Let us know how it goes.
Donna
Surgery in general is not fun, but you will be under the care of a very competent surgeon. Are you doing bilateral?
Good luck with your insurance.... even after I spent two months getting everything set as "participating" my insurance has only paid the non-participant rate so far. So, we've spent more time calling them, where we've been assured its just a "simple mistake" which will be corrected soon. Be sure you get the hospital AND the anesthesiologist included as well, since they all bill you separately!
Let us know how it goes.
Donna
Hi folks,
Thanks for the replies.
Donna, yes, it will be bilateral.
Donna, my quoted costs were same as yours. For those upset about the costs, I have found Filler's office to be easy to work with about payments so far. They know this stuff is expensive.
Everyone but Filler is in my network, thank goodness. Still awaiting appeal decision on Filler referral. I gave them 36 pages so if I didn't convince them, maybe I just just wore them down. Rep at Blue Cross said I got points for organization and thoroughness but no promises.
Yes, I PROMISE to keep everyone up to date on how this goes. Donna has done a great job of doing this. I will too and not just drop off the boards. I know this stuff hurts and people need hope and truth.
HAVE A WONDERFUL THANKSGIVING everyone
Thanks for the replies.
Donna, yes, it will be bilateral.
Donna, my quoted costs were same as yours. For those upset about the costs, I have found Filler's office to be easy to work with about payments so far. They know this stuff is expensive.
Everyone but Filler is in my network, thank goodness. Still awaiting appeal decision on Filler referral. I gave them 36 pages so if I didn't convince them, maybe I just just wore them down. Rep at Blue Cross said I got points for organization and thoroughness but no promises.
Yes, I PROMISE to keep everyone up to date on how this goes. Donna has done a great job of doing this. I will too and not just drop off the boards. I know this stuff hurts and people need hope and truth.
HAVE A WONDERFUL THANKSGIVING everyone
Okay, this question is for EVERYONE reading this because I'm wondering who else has the same symptoms as me...if this is a common link between all PS people. My fiance and I are seriously considering sending me out to see Dr. Filler (I'm in AL, this will cost us almost all we have left)...but I CANNOT live like this anymore. This is not a life.
So HERE'S MY QUESTION:
Does anyone else have a bursitis/tendonitis burning, inflammed pain on the side of their butt, around the greater trochanter. The best way I can describe it that's it's in the "dish" of my butt, like when you squeeze your butt cheeks together and on the side of your butt there is this indentation around your greater trochanter, like a dish. This is where the "epicenter" of my pain is on both sides...like where all the tendons of my butt attach to my GT.
This is exactly how my pain started...I could have sworn I had bursitis but the pain does not localize to the bursa. Then I was told it was tendonitis (which was possible, because all tendons do attach there) but if its, tendonitis, my GOD, it's the worlds worst case of tendonitis ever. I have nerve pain down my left leg, and just muscle problems in both butts and legs. BUT, my pain is located on the sides of my butt, about the size of my hand on each side, and it feels like a burning, inflammed tissue type pain. It never, ever, ever goes away.
Have any of you experienced this? For those of you who have seen Dr. Filler, (this is a big question) did he say he could actually get rid of the butt pain? Or only the nerve pain?
I'm about ready to go and see Filler, take what we have left in savings (or get a loan) and pray to god I have PS and he can help me. That's why I'm asking if my symptoms sound anything like any of yours.
Thank you all so much. I love this group. This is the first place I have ever found where I think I may have found other people have gone through this. You all are so wonderful.
Take care, happy thanksgiving,
Julie
So HERE'S MY QUESTION:
Does anyone else have a bursitis/tendonitis burning, inflammed pain on the side of their butt, around the greater trochanter. The best way I can describe it that's it's in the "dish" of my butt, like when you squeeze your butt cheeks together and on the side of your butt there is this indentation around your greater trochanter, like a dish. This is where the "epicenter" of my pain is on both sides...like where all the tendons of my butt attach to my GT.
This is exactly how my pain started...I could have sworn I had bursitis but the pain does not localize to the bursa. Then I was told it was tendonitis (which was possible, because all tendons do attach there) but if its, tendonitis, my GOD, it's the worlds worst case of tendonitis ever. I have nerve pain down my left leg, and just muscle problems in both butts and legs. BUT, my pain is located on the sides of my butt, about the size of my hand on each side, and it feels like a burning, inflammed tissue type pain. It never, ever, ever goes away.
Have any of you experienced this? For those of you who have seen Dr. Filler, (this is a big question) did he say he could actually get rid of the butt pain? Or only the nerve pain?
I'm about ready to go and see Filler, take what we have left in savings (or get a loan) and pray to god I have PS and he can help me. That's why I'm asking if my symptoms sound anything like any of yours.
Thank you all so much. I love this group. This is the first place I have ever found where I think I may have found other people have gone through this. You all are so wonderful.
Take care, happy thanksgiving,
Julie
Hi Julie,
Yes, this does sound a lot like me. Now, I haven't seen Dr. Filler, so I could have something else going on entirely, but this is what my docs say. I generally only have pain on one side though, with the occasional flareup on the other side. Most of my pain started around the GT and spread from there. I still can't lay on that side since it is very sensitive. Even the skin around there is sensitive, which doesn't make much sense to me. Good luck with Dr. Filler and I hope you're pain is low today.
Take care,
Kayti
Yes, this does sound a lot like me. Now, I haven't seen Dr. Filler, so I could have something else going on entirely, but this is what my docs say. I generally only have pain on one side though, with the occasional flareup on the other side. Most of my pain started around the GT and spread from there. I still can't lay on that side since it is very sensitive. Even the skin around there is sensitive, which doesn't make much sense to me. Good luck with Dr. Filler and I hope you're pain is low today.
Take care,
Kayti
Kayti,
At times, especially in the beginning when, the sensitive skin pain came with me too. I wouldn't even wear underwear because it was that sensitive. Now, if you touch my butt (GT area) it's sensitive. I'm heading toward the one year mark soon. Mine started with a minor "catch" in my butt walking, and snowballed fast into burning searing butt pain. Now the muscles all around are seizing...not working right.
So, docs' are saying PS to you but you've haven't gotten a good diagnosis yet? I read about your horrible last injection. Maybe we should start a "save our burning butts" campaign to raise money so we can all go to CA to have Dr. Filler do the injection the right way. I guess that is the only way to really confirm the dx. I pass all of the "manual" tests...but can't find a MD here who knows how to inject the muscle. A true, matter of fact, certain medical diagnosis would be amazing.
If his surgery would relieve the burning butt pain, I don't care how much it costs, i'd do it. I'm a nurse and had to leave work because of this. All of our lives have changed so much from this. It feels more like a disease than a syndrome, it cripples and stops our lives, hopes, dreams, etc. It's just horrible.
Take care,
Julie
PS--To Donna, did your burning in the butt pain go away after surgery?
At times, especially in the beginning when, the sensitive skin pain came with me too. I wouldn't even wear underwear because it was that sensitive. Now, if you touch my butt (GT area) it's sensitive. I'm heading toward the one year mark soon. Mine started with a minor "catch" in my butt walking, and snowballed fast into burning searing butt pain. Now the muscles all around are seizing...not working right.
So, docs' are saying PS to you but you've haven't gotten a good diagnosis yet? I read about your horrible last injection. Maybe we should start a "save our burning butts" campaign to raise money so we can all go to CA to have Dr. Filler do the injection the right way. I guess that is the only way to really confirm the dx. I pass all of the "manual" tests...but can't find a MD here who knows how to inject the muscle. A true, matter of fact, certain medical diagnosis would be amazing.
If his surgery would relieve the burning butt pain, I don't care how much it costs, i'd do it. I'm a nurse and had to leave work because of this. All of our lives have changed so much from this. It feels more like a disease than a syndrome, it cripples and stops our lives, hopes, dreams, etc. It's just horrible.
Take care,
Julie
PS--To Donna, did your burning in the butt pain go away after surgery?
Hi again Julie,
I have a catch in my hip too, but all the docs brushed it off, said it was a ligament snap, which is harmless. However, they never listened to it. A ligament snap is high pitched and mine is a deep, loud thunk. The thunk has minimized with core exercises, but not the pain.
I would also like to have a definite diagnosis. I did have a pelvic MRI that included the SI joint, but it showed nothing. I was diagnosed by exclusion of other diagnoses, since nothing seems to be causing it. Frustrating!
"Save our burning butts!" That would go over well on one of those collection baskets at the local gas station. What would we put on the flyer to encourage people to donate? Various pics of naked bums? lol That mental picture will keep me laughing for a few days!
Take care,
Kayti
Julie,
Yes. Pain in the butt, pain in the GT, nerve pain down the legs and into the foot. The nerve pain is not truly excruciating. For me, it is like a sunburn and I wear jeans. The pain in the GT is sharp, the pain in the butt can be sharp or dull. The apin in the feet is a burning. I can feel my nerves jump and twitch. This is random and in random locations.
The sharp pain in the the butt is the piriformis in deep spasm. When mine does that, I even feel it in the upper buttocks and very low back. I am finding a great deal of relief in using heat. I use a heat wrap to go around my lower back/upper buttocks and a patch on both GT joints. It really, really helps relax everything. I was sitting on a heat pad which helped but my poor rear started to object to the heat in a couple of locations, even on the low setting. I think I wore down the pad to a point that the covering was thin and the wires were applying too much heat. That is when I swtiched to the wraps and pads. Therma Care makes them.
Your Big question: Donna can answer better than me but, yes, Dr. Filler can remove the butt pain, the GT pain and the nerve pain. He better because I am getting ready to spend a ton of money on that bet.
I too worried about the money. My wonderful wife put it in perspective for me. She said, "what is the point in having the extra money by not having surgery, when you won't feel well enough to spend it anyway". That got my attention, stopped my guilt, and made enough sense that I let the concern go. I married a very wise lady. Point is: If I had to make payments for the rest of my life to pay for a means to rid myself of this stuff and return my life to normal, I woould do it in a heartbeat. Not only for myself but the people who love me and want me back.
Yes. Pain in the butt, pain in the GT, nerve pain down the legs and into the foot. The nerve pain is not truly excruciating. For me, it is like a sunburn and I wear jeans. The pain in the GT is sharp, the pain in the butt can be sharp or dull. The apin in the feet is a burning. I can feel my nerves jump and twitch. This is random and in random locations.
The sharp pain in the the butt is the piriformis in deep spasm. When mine does that, I even feel it in the upper buttocks and very low back. I am finding a great deal of relief in using heat. I use a heat wrap to go around my lower back/upper buttocks and a patch on both GT joints. It really, really helps relax everything. I was sitting on a heat pad which helped but my poor rear started to object to the heat in a couple of locations, even on the low setting. I think I wore down the pad to a point that the covering was thin and the wires were applying too much heat. That is when I swtiched to the wraps and pads. Therma Care makes them.
Your Big question: Donna can answer better than me but, yes, Dr. Filler can remove the butt pain, the GT pain and the nerve pain. He better because I am getting ready to spend a ton of money on that bet.
I too worried about the money. My wonderful wife put it in perspective for me. She said, "what is the point in having the extra money by not having surgery, when you won't feel well enough to spend it anyway". That got my attention, stopped my guilt, and made enough sense that I let the concern go. I married a very wise lady. Point is: If I had to make payments for the rest of my life to pay for a means to rid myself of this stuff and return my life to normal, I woould do it in a heartbeat. Not only for myself but the people who love me and want me back.
Swalaggie,
When you went to see Dr. Filler for the eval and diagnostics, how long did you have to stay? Were they able to do the consult one day, the MR the next and the injection the next? I'm looking at how to plan the trip, how long to plan to stay.
Also, we're thinking of sending me out there by myself. Did you have someone with you or did you go solo? Did you have to travel far? I really want to have my fiance there with me (for the support and extra set of ears/insight/perspective) as well as the fact that i'm a 28 year old from AL and am overwhelmed at going by myself. In your experience would it be better to bring someone?
Do you have any SI problems? How did you get PS?
thanks so much for all your advice..
Julie
When you went to see Dr. Filler for the eval and diagnostics, how long did you have to stay? Were they able to do the consult one day, the MR the next and the injection the next? I'm looking at how to plan the trip, how long to plan to stay.
Also, we're thinking of sending me out there by myself. Did you have someone with you or did you go solo? Did you have to travel far? I really want to have my fiance there with me (for the support and extra set of ears/insight/perspective) as well as the fact that i'm a 28 year old from AL and am overwhelmed at going by myself. In your experience would it be better to bring someone?
Do you have any SI problems? How did you get PS?
thanks so much for all your advice..
Julie
Ditto on the nerve pain to the foot, GT pain, sharp pain...all here. You are the first person I've spoken to who has the random nerve twitching. For me, it's like little nerve twitches up and down my legs...
The money...my finace who I am too lucky to have found has basically said the same thing...and the guilt I feel for him being willing to send me out there is huge. But what you said is true...that really does put things into perspective. When I read that I actually got weepy...because, really, I would make payments for the rest of my life if it meant that I could have my life back. He wants me to go out there for the consult and diagnostics...and is willing to help send me out there. I just hope to god this is what it is...it's just so much money to spend on the chance that this is what I have. If I do
Right now it feels like a gamble because I don't have a "firm" diagnosis...just been told this is what I have by a number of doctors...though I have not had the diagnostic injections. Also, from my research, and speaking with you, and palpating my own butt for 10 months, it seems like this is the problem. I really, honestly, don't know how I got this. Has something to do with my SI, but I don't know.
julie
The money...my finace who I am too lucky to have found has basically said the same thing...and the guilt I feel for him being willing to send me out there is huge. But what you said is true...that really does put things into perspective. When I read that I actually got weepy...because, really, I would make payments for the rest of my life if it meant that I could have my life back. He wants me to go out there for the consult and diagnostics...and is willing to help send me out there. I just hope to god this is what it is...it's just so much money to spend on the chance that this is what I have. If I do
Right now it feels like a gamble because I don't have a "firm" diagnosis...just been told this is what I have by a number of doctors...though I have not had the diagnostic injections. Also, from my research, and speaking with you, and palpating my own butt for 10 months, it seems like this is the problem. I really, honestly, don't know how I got this. Has something to do with my SI, but I don't know.
julie