David, I am crying tears of joy for you, it is so exciting!!!!! I too had a 7-8 surgery with lots of stuff on my right side. So Filler thought both your piriformis muscles were the culprits? I always wonder how the nerves get these adhesions. I had pain 4 years and you months, yet lots of nerve adhesions for both of us. You are lucky he got them all on the left thru one incision. May I ask what is a gt joint you referred to? Also the thigh pain I referred to after surgery I had, sorry it was a pain on the sides of my hips, both sides, it was sore to sleep on either side but that is all gone now. What mg of skelaxin did Sheila give you?
My update today is, very little right sciatic pain but the darn left side upper butt pain I thought was gone is screaming at me, kinda like your right leg being worse some days when it was the better of the two. Geez this is tiring.
Leesa, I look forward to speaking to Ever tommorrow. If the healing time takes 6 months instead of 3 you think they would say that so they don't get bombarded with worried people at the 3 month mark!
For the nurse gals out there, I take Flexeril 10 mg and don't get much relief from muscle spasms. David takes Skelaxin. Is there a difference between the two. Since I talk to the NP tommorrow I have a chance to have prescribed if anyone knows.
Thanks everyone, I always feel so much better after reading all the posts. I'm so happy to have found you all.
Someone asked where I live. On the BEAUTIFUL Garden Isle of Kauai. today is hot and sunny about 80 degrees :wavey:
My update today is, very little right sciatic pain but the darn left side upper butt pain I thought was gone is screaming at me, kinda like your right leg being worse some days when it was the better of the two. Geez this is tiring.
Leesa, I look forward to speaking to Ever tommorrow. If the healing time takes 6 months instead of 3 you think they would say that so they don't get bombarded with worried people at the 3 month mark!
For the nurse gals out there, I take Flexeril 10 mg and don't get much relief from muscle spasms. David takes Skelaxin. Is there a difference between the two. Since I talk to the NP tommorrow I have a chance to have prescribed if anyone knows.
Thanks everyone, I always feel so much better after reading all the posts. I'm so happy to have found you all.
Someone asked where I live. On the BEAUTIFUL Garden Isle of Kauai. today is hot and sunny about 80 degrees :wavey:
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Hawaiigirl, I am very jealous of your weather report. Today it is -12 degrees with windchill factor about -22. We are in the middleof our 3rd snow storm in 10 days. Oh Me!! How did I ever end up in Canada.
There were so many postssince I was last on that I took notes and now it is midnight and I jsut don't have time to reply to everyone I want to. So for tonight I will jsut say thanks to all of you who encouraged me after my story about my discouraging visit to the pain clinic.
I have lot and lots more to say but will get back on tomorrow when I am not so tired and uncomfortble. What an amazingly great group of people. Maybe people who are predisposed to PS also have genes for making them nice, brave, optimistic,willing to share both the sad and happy times, and having great senses of humor. I feel lucky that I just happened on this forum and now it is the first thng I lookfor when I turn on my computer in the morning..
Night All. More in the morning.
Shirley
There were so many postssince I was last on that I took notes and now it is midnight and I jsut don't have time to reply to everyone I want to. So for tonight I will jsut say thanks to all of you who encouraged me after my story about my discouraging visit to the pain clinic.
I have lot and lots more to say but will get back on tomorrow when I am not so tired and uncomfortble. What an amazingly great group of people. Maybe people who are predisposed to PS also have genes for making them nice, brave, optimistic,willing to share both the sad and happy times, and having great senses of humor. I feel lucky that I just happened on this forum and now it is the first thng I lookfor when I turn on my computer in the morning..
Night All. More in the morning.
Shirley
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David:
I CAN'T EVEN BEGIN TO TELL YOU HOW HAPPY I AM TO HEAR HOW WELL YOU ARE DOING.
You've been such a constant light for all of us, even through the rough days. Just knowing someone out there is getting better and staying positive no matter what has been so great to follow. I feel like I know you and feel like you are a good friend. It s so good to hear a friend is doing well. Congratulations to you.
This goes for everyone. It s getting harder to respond to everyone individually since there are so many of us but just know that you are all in my thoughts. I feel like I ve gained so many friends here and wish only the best for every single one of you.
Thanks for your recent post Donna. Take the stretching easy (I m sure you will). Good to know you are also doing so well.
Shirley: -22 YIKES. I don t live in Hawaii but I think it was 80 degrees here today. One thing to look forward to when you come to see Dr. Filler anyway!
Margie - thanks for the letter writing offer that was very thoughtful. I think I can keep work at bay for now. If they don t want me back when I m ready, the beach is close so I could always camp out there!!!
Debbie: You asked about work. I worked up to the surgery but it was difficult. I m considering filing for disability to cover the 2-3 weeks I m planning on being out of work. I ll let you know what I decide to do and how it goes.
Hawaiigirl: Keep posting, your recovery path is so important to us and of course we are here for you too.
To those who are new to this forum, hang in there. I know there is relief around the corner no matter how long your road is to the corner!!
Leesa
I CAN'T EVEN BEGIN TO TELL YOU HOW HAPPY I AM TO HEAR HOW WELL YOU ARE DOING.
You've been such a constant light for all of us, even through the rough days. Just knowing someone out there is getting better and staying positive no matter what has been so great to follow. I feel like I know you and feel like you are a good friend. It s so good to hear a friend is doing well. Congratulations to you.
This goes for everyone. It s getting harder to respond to everyone individually since there are so many of us but just know that you are all in my thoughts. I feel like I ve gained so many friends here and wish only the best for every single one of you.
Thanks for your recent post Donna. Take the stretching easy (I m sure you will). Good to know you are also doing so well.
Shirley: -22 YIKES. I don t live in Hawaii but I think it was 80 degrees here today. One thing to look forward to when you come to see Dr. Filler anyway!
Margie - thanks for the letter writing offer that was very thoughtful. I think I can keep work at bay for now. If they don t want me back when I m ready, the beach is close so I could always camp out there!!!
Debbie: You asked about work. I worked up to the surgery but it was difficult. I m considering filing for disability to cover the 2-3 weeks I m planning on being out of work. I ll let you know what I decide to do and how it goes.
Hawaiigirl: Keep posting, your recovery path is so important to us and of course we are here for you too.
To those who are new to this forum, hang in there. I know there is relief around the corner no matter how long your road is to the corner!!
Leesa
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Hawaiigirl(LOL, HG from here out),
I'm at work so I'll look up the Skelaxin dosage when I get home. The GT joints = greater trochanter joint in each hip. The pain I would have in each joint was a dull ache and sometimes would be so sharp it would make my knees buckle. It is the joint where the piriformis and other gluteal muscles attach to the hip. After surgery, they were very, very sore, even to the point I could not sleep on my side. As time has gone on, the soreness has faded but I can still feel it on poor days. Yes, the worst part of being in pain is it wears one you. That's why when I feel really good, I feel this exhaustion sweep over me. I guess we compensate pain with adrenaline and energy. I'm assuming that is why I have not gained much, if any, weight since the PS came on even though my acitivites pale in comparison to my activities prior to being hurt.
Data point for Leesa, HG, and anyone else that will have this surgery. Yesterday, I communicated that I had no nerve pain but I recognized every day was different. Last night, we had a cold front blow through and the weather went to heck and the temps dropped from the mid 70's to 36 this morning. My nerve pain, again brought on by butt spasms(I can literally feel these in my hips and very upper buttocks), has slightly increased today. I swear that I am living testimony that weather does indeed impact our bodies and this healing process. It has to be that your body tends to tighten with the drop in temp and I wonder if falling pressure tends to swell body tissues. Not to an outwardly noticeable degree but incrementally. Just enough that it enhances inflammation.
Long winded way of saying that ups and downs will be part of your recovery and something as small as a weather change may influence it. Expect them but know that they are temporary and normal and don't fret. I call it "embracing" just to keep my vocabulary at a rated G standard. We have a 9 week old pup for crying out loud and bad language just won't do. :-)
Hope that helps.
David
I'm at work so I'll look up the Skelaxin dosage when I get home. The GT joints = greater trochanter joint in each hip. The pain I would have in each joint was a dull ache and sometimes would be so sharp it would make my knees buckle. It is the joint where the piriformis and other gluteal muscles attach to the hip. After surgery, they were very, very sore, even to the point I could not sleep on my side. As time has gone on, the soreness has faded but I can still feel it on poor days. Yes, the worst part of being in pain is it wears one you. That's why when I feel really good, I feel this exhaustion sweep over me. I guess we compensate pain with adrenaline and energy. I'm assuming that is why I have not gained much, if any, weight since the PS came on even though my acitivites pale in comparison to my activities prior to being hurt.
Data point for Leesa, HG, and anyone else that will have this surgery. Yesterday, I communicated that I had no nerve pain but I recognized every day was different. Last night, we had a cold front blow through and the weather went to heck and the temps dropped from the mid 70's to 36 this morning. My nerve pain, again brought on by butt spasms(I can literally feel these in my hips and very upper buttocks), has slightly increased today. I swear that I am living testimony that weather does indeed impact our bodies and this healing process. It has to be that your body tends to tighten with the drop in temp and I wonder if falling pressure tends to swell body tissues. Not to an outwardly noticeable degree but incrementally. Just enough that it enhances inflammation.
Long winded way of saying that ups and downs will be part of your recovery and something as small as a weather change may influence it. Expect them but know that they are temporary and normal and don't fret. I call it "embracing" just to keep my vocabulary at a rated G standard. We have a 9 week old pup for crying out loud and bad language just won't do. :-)
Hope that helps.
David
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Sadie,
Did you have surgery and how was your results. I have been dealing on and off with Periformis Syndrome for years. I have seen Dr Barbaro and I not quite ready for surgery but I am interested in hearing if his results are positive.
Did you have surgery and how was your results. I have been dealing on and off with Periformis Syndrome for years. I have seen Dr Barbaro and I not quite ready for surgery but I am interested in hearing if his results are positive.
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TO ALL OF YOU
BEFORE I POSTED THAT I HAD ABOUT WHAT ALL OF YOU SAID YOU HAVE, PLUS SOME. WELL THE PLUS SOME PART I DON'T SEE ANYONE ELSE POST. SO IF YOU WANT TO READ IT, I WILL WRITE IT. IF YOU LOOKUP CAUDA EQUINA SYNDROME, THAT SAYS ALOT OF IT. ( I WAS NUMB IN THE SADDLE AREA , GROIN , ENTIRE LEG , FOOT & TOES. ) BLATTER , BOWELS, NOTHING WORKED RIGHT, IT FELT LIKE I HAD A TREE UP MY REAREND. WHEN I SAT DOWN IT CUT OFF THE BLOOD TO MY LEG (MY FOOT AND ALL THE UP MY LEG , INTO MY GROIN (THE VEINS WOULD STICK OUT LIKE YOU PUT A RUBBER AROUND YOUR WRIST) WHEN I WOULD STANDUP I COULD FEEL A QUIVER FROM MY FOOT TO MY CHEST.
I WILL TRY TO WRITE THIS AS NICE AS POSIBLE. WHEN I WOULD PUT PRESURE ON MY HIPS , (LETS JUST SAY I DID NOT NEED VIAGRA).
WHEN I SAY EVERYTHING NUMB , I MEAN THIS TOO.
I LET THIS GO ON FOR 8 MONTHS (BECAUSE FIRST DOCTOR TOLD ME TO GIVE IT A FEW MONTHS , IT WILL GO AWAY.) BUT I WAS NOT IN PAIN , I WAS NUMB. SO AFTER SEVERAL DOCTORS & THE SAME KIND OF ANSWER FROM THEM, I STARTED READING ABOUT IT. TO MAKE THIS LONG STORY A LITTLE SHORTER, I REMOVED MY WALLET & WORKED ON MY SPAYED FOOT( KEEPING IT STRAIT) WITHIN A WEEK THE NUMBNESS WENT AWAY ( EXCEPT THE FOOT ) & THE PAIN KICKED IN. I COULDN'T MOVE MY TOES & MY LEG WOULD JUST BUCKLE ON ME I COULD NOT SIT FOR EVEN 1 SECOND. I HAD INJECTIONS WITH DR FILLER , THEN IN SEPT, I HAD SURGERY WITH DR FILLER. I WAS IN SURGERY FOR 8 HOURS , ON ONE SIDE, NOT BOTH. DR FILLER TOLD MY WIFE THAT THERE WAS ALOT OF COMPLICATIONS. I DID NOT TALK TO DR FILLER AFTER SURGERY, BUT SHEILA TOLD ME THAT ONCE HE GOT IN THERE , HE FOUND ALOT OF DAMAGE.
SO NOW AFTER 5 MONTHS POST SURGERY, I WOULD SAY THAT IT IS 70%-80% BETTER. I CAN MOVE MY TOES, MY LEG DONT SEEM TO BUCKLE AS MUCH( BUT STILL WEAK) THE BLOOD DONT GET CUT OFF ANYMORE TO MY LEG, VIAGRA ISSUE IS FIXED, THE BATHROOM ISSUE IS FIXED, I CAN SIT FOR ALOT LONGER THAN BEFORE , THE REASON I WRITE THIS IS, BECAUSE I DONT THINK EVERYONES IS THE SAME, AND IM SURE NOT SAYING THAT YOURS DONT HURT, IF YOU GOT NERVE DAMAGE YOU HURT! I THINK WHAT I READ IS THAT THE HARDER THE NERVE IS COMPRESSED, THE WORST THE OUTCOME AFTER SURGERY.( MAYBE THE DR ON HERE COULD ANSWER THAT?) I READ THIS FORUM ABOUT 2-3 TIMES A WEEK, I DONT REPLY MUCH BECAUSE I DONT WANT PEOPLE TO THINK THE SURGERY DONT WORK. IF YOU HAVE THIS , I THINK DR FILLER IS YOUR BEST CHANCE, THE SOONER YOU GO THE BETTER. IM 5 MONTHS POST SURGERY, AND GLAD I DID IT, ALTHOUGH NOT FIXED YET, IT IS DEFINITLY BETTER. I WILL WAIT FOR 1 YEAR BEFORE I THINK THAT IT WILL NOT FIX. I THINK SOME ON HERE WRITE NEGATIVE ABOUT DR FILLER BECAUSE THEY DID NOT HAVE THE MONEY TO GO TO HIM & THATS SOUR GRAPES. IT IS SAD THAT PEOPLE DONT GET FIXED BECAUSE OF MONEY, BUT THANK YOUR INSURANCE COMPANYS FOR THAT. DAVID , LEEZA & DONNA SEEM TO BE PRETTY GOOD ON KEEPING EVERYONE POSTED ABOUT SURGERY, I DONT THINK MY INPUT WILL HELP, BUT IF YOU ASK I WILL ANSWER. DAVID , LEEZA & GANG, I WOULD LOVE TO SEE YOU GUYS ORGANIZE A GROUP TO GET THE REAL PROBLEM, THE INSURANCE COMPANYS, THEY DECIDE & PAY WHAT THEY WANT & TOUGH TO YOU. IF THEY WOULD PAY , THERE WOULD BE ALOT MORE DR FILLERS & THE PRICE WOULD GO DOWN. THERE IS A DOCTOR ON HERE THAT COULD HELP YOU WITH ALOT OF INFO. ABOUT INSURANCE CO. YOU GUYS ARE GOOD LEADERS ON THIS , SO GO GET THEM.
BEFORE I POSTED THAT I HAD ABOUT WHAT ALL OF YOU SAID YOU HAVE, PLUS SOME. WELL THE PLUS SOME PART I DON'T SEE ANYONE ELSE POST. SO IF YOU WANT TO READ IT, I WILL WRITE IT. IF YOU LOOKUP CAUDA EQUINA SYNDROME, THAT SAYS ALOT OF IT. ( I WAS NUMB IN THE SADDLE AREA , GROIN , ENTIRE LEG , FOOT & TOES. ) BLATTER , BOWELS, NOTHING WORKED RIGHT, IT FELT LIKE I HAD A TREE UP MY REAREND. WHEN I SAT DOWN IT CUT OFF THE BLOOD TO MY LEG (MY FOOT AND ALL THE UP MY LEG , INTO MY GROIN (THE VEINS WOULD STICK OUT LIKE YOU PUT A RUBBER AROUND YOUR WRIST) WHEN I WOULD STANDUP I COULD FEEL A QUIVER FROM MY FOOT TO MY CHEST.
I WILL TRY TO WRITE THIS AS NICE AS POSIBLE. WHEN I WOULD PUT PRESURE ON MY HIPS , (LETS JUST SAY I DID NOT NEED VIAGRA).
WHEN I SAY EVERYTHING NUMB , I MEAN THIS TOO.
I LET THIS GO ON FOR 8 MONTHS (BECAUSE FIRST DOCTOR TOLD ME TO GIVE IT A FEW MONTHS , IT WILL GO AWAY.) BUT I WAS NOT IN PAIN , I WAS NUMB. SO AFTER SEVERAL DOCTORS & THE SAME KIND OF ANSWER FROM THEM, I STARTED READING ABOUT IT. TO MAKE THIS LONG STORY A LITTLE SHORTER, I REMOVED MY WALLET & WORKED ON MY SPAYED FOOT( KEEPING IT STRAIT) WITHIN A WEEK THE NUMBNESS WENT AWAY ( EXCEPT THE FOOT ) & THE PAIN KICKED IN. I COULDN'T MOVE MY TOES & MY LEG WOULD JUST BUCKLE ON ME I COULD NOT SIT FOR EVEN 1 SECOND. I HAD INJECTIONS WITH DR FILLER , THEN IN SEPT, I HAD SURGERY WITH DR FILLER. I WAS IN SURGERY FOR 8 HOURS , ON ONE SIDE, NOT BOTH. DR FILLER TOLD MY WIFE THAT THERE WAS ALOT OF COMPLICATIONS. I DID NOT TALK TO DR FILLER AFTER SURGERY, BUT SHEILA TOLD ME THAT ONCE HE GOT IN THERE , HE FOUND ALOT OF DAMAGE.
SO NOW AFTER 5 MONTHS POST SURGERY, I WOULD SAY THAT IT IS 70%-80% BETTER. I CAN MOVE MY TOES, MY LEG DONT SEEM TO BUCKLE AS MUCH( BUT STILL WEAK) THE BLOOD DONT GET CUT OFF ANYMORE TO MY LEG, VIAGRA ISSUE IS FIXED, THE BATHROOM ISSUE IS FIXED, I CAN SIT FOR ALOT LONGER THAN BEFORE , THE REASON I WRITE THIS IS, BECAUSE I DONT THINK EVERYONES IS THE SAME, AND IM SURE NOT SAYING THAT YOURS DONT HURT, IF YOU GOT NERVE DAMAGE YOU HURT! I THINK WHAT I READ IS THAT THE HARDER THE NERVE IS COMPRESSED, THE WORST THE OUTCOME AFTER SURGERY.( MAYBE THE DR ON HERE COULD ANSWER THAT?) I READ THIS FORUM ABOUT 2-3 TIMES A WEEK, I DONT REPLY MUCH BECAUSE I DONT WANT PEOPLE TO THINK THE SURGERY DONT WORK. IF YOU HAVE THIS , I THINK DR FILLER IS YOUR BEST CHANCE, THE SOONER YOU GO THE BETTER. IM 5 MONTHS POST SURGERY, AND GLAD I DID IT, ALTHOUGH NOT FIXED YET, IT IS DEFINITLY BETTER. I WILL WAIT FOR 1 YEAR BEFORE I THINK THAT IT WILL NOT FIX. I THINK SOME ON HERE WRITE NEGATIVE ABOUT DR FILLER BECAUSE THEY DID NOT HAVE THE MONEY TO GO TO HIM & THATS SOUR GRAPES. IT IS SAD THAT PEOPLE DONT GET FIXED BECAUSE OF MONEY, BUT THANK YOUR INSURANCE COMPANYS FOR THAT. DAVID , LEEZA & DONNA SEEM TO BE PRETTY GOOD ON KEEPING EVERYONE POSTED ABOUT SURGERY, I DONT THINK MY INPUT WILL HELP, BUT IF YOU ASK I WILL ANSWER. DAVID , LEEZA & GANG, I WOULD LOVE TO SEE YOU GUYS ORGANIZE A GROUP TO GET THE REAL PROBLEM, THE INSURANCE COMPANYS, THEY DECIDE & PAY WHAT THEY WANT & TOUGH TO YOU. IF THEY WOULD PAY , THERE WOULD BE ALOT MORE DR FILLERS & THE PRICE WOULD GO DOWN. THERE IS A DOCTOR ON HERE THAT COULD HELP YOU WITH ALOT OF INFO. ABOUT INSURANCE CO. YOU GUYS ARE GOOD LEADERS ON THIS , SO GO GET THEM.
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Thanks JLB for coming back on and telling more of your story. With all the problems you were experiencing I think that to be 70-80% better in 5 months is great. Although I truly understand each one of us wants to 100% that is good news in my opinion. Hang in there. :D
I spoke to Ever today for the first time. A very nice guy, very encouraging, sounds capable. He wants to put me on Flexeril 10mg for the muscle spasms and Lyrica for the nerve pain. I went to pick up meds and was told the lyrica is a controlled substance and can't be filled by outstate doctor presc. Pharmacist said most people don't like it and its very habit forming, doesn't cure anything just masks pain, and not well according to her feedback from people.
Anyone on it that can share their thoughts? I did tell Ever at the time I was hesitant to take things that just mask pain because every drug has a side affect. Ever told me as he did Leesa, 6 months is more the guideline for healing and if after that pain is still there they would want you to come back for another MRN. All I can say is that is NOT something I want to do again as my insurance definitely is not gonna pay for round 2. It seems with an 7-8 hour surgery Dr. Filler should have seen it all. Soooo, I just can't go there in my mind, must remain positive. If anyone prays please put me in them :D
David, that side hip pain was what i was talking about earlier. Sore before surgery, real sore after surgery were it hurt to sleep on sides. Thats gone, at least for now. Praying for all of you! Hawaiigirl
I spoke to Ever today for the first time. A very nice guy, very encouraging, sounds capable. He wants to put me on Flexeril 10mg for the muscle spasms and Lyrica for the nerve pain. I went to pick up meds and was told the lyrica is a controlled substance and can't be filled by outstate doctor presc. Pharmacist said most people don't like it and its very habit forming, doesn't cure anything just masks pain, and not well according to her feedback from people.
Anyone on it that can share their thoughts? I did tell Ever at the time I was hesitant to take things that just mask pain because every drug has a side affect. Ever told me as he did Leesa, 6 months is more the guideline for healing and if after that pain is still there they would want you to come back for another MRN. All I can say is that is NOT something I want to do again as my insurance definitely is not gonna pay for round 2. It seems with an 7-8 hour surgery Dr. Filler should have seen it all. Soooo, I just can't go there in my mind, must remain positive. If anyone prays please put me in them :D
David, that side hip pain was what i was talking about earlier. Sore before surgery, real sore after surgery were it hurt to sleep on sides. Thats gone, at least for now. Praying for all of you! Hawaiigirl
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Wow, Lots of new club members. I have been reading everyday, but nothing to really add. JLB, my daughter who is 21 has the numbness that you posted about. She also self caths 2x aday to make sure she is emptying her bladder. You are the first to talk about that area, besides the bottom area. I just want to thank everyone for their updates.
I have watched my daughter's life dwindle from great body, great future, great friends, to really only having us and our couch. We are 19 months into this crazy nightmare. Our surgical phone consult is on the 20th. Her injections took place on Jan. 11th. Her only relief from the injections were two mornings in a row the pain seemed a bit calmer, days 1 and 2. On the 5th day she for a bleeting moment rated her pain to a 3. Except for these few differences she really had no effect from the injections. How does this help for diagnostic purposes? From our phone consult Sheila said She would need the surgery. I am so worried making my daughter worse. To whom ever has had the surgery, did you have the injections without really much to notice?? My daughter can not sit. Not even at the computer, she lays down in the car for any appointments ect. She can walk but this makes the pain worse.
Also, did any of you wonderful women try intra-vaginal stuff? This is the only modality we hadn't tried, but are starting, one last try for a miracle.
The other crazy thing, is why can the medical, PTs give the same opinion. One lady we saw said she found some internal trigger points, then the other lady (we tried so we could compare two different people and their techniques) said no trigger points. We are obviously choosing the one my daughter felt something from. Several have said do an implant, several have said no. It is hard trying to truly find out what is the real problem, we want to treat the real problem, not just symtpoms, this is why we are banking on Filler. Hope you all have a great day, and my hope is that you all have positive people who are supporting you. You all deserve a healing.
I have watched my daughter's life dwindle from great body, great future, great friends, to really only having us and our couch. We are 19 months into this crazy nightmare. Our surgical phone consult is on the 20th. Her injections took place on Jan. 11th. Her only relief from the injections were two mornings in a row the pain seemed a bit calmer, days 1 and 2. On the 5th day she for a bleeting moment rated her pain to a 3. Except for these few differences she really had no effect from the injections. How does this help for diagnostic purposes? From our phone consult Sheila said She would need the surgery. I am so worried making my daughter worse. To whom ever has had the surgery, did you have the injections without really much to notice?? My daughter can not sit. Not even at the computer, she lays down in the car for any appointments ect. She can walk but this makes the pain worse.
Also, did any of you wonderful women try intra-vaginal stuff? This is the only modality we hadn't tried, but are starting, one last try for a miracle.
The other crazy thing, is why can the medical, PTs give the same opinion. One lady we saw said she found some internal trigger points, then the other lady (we tried so we could compare two different people and their techniques) said no trigger points. We are obviously choosing the one my daughter felt something from. Several have said do an implant, several have said no. It is hard trying to truly find out what is the real problem, we want to treat the real problem, not just symtpoms, this is why we are banking on Filler. Hope you all have a great day, and my hope is that you all have positive people who are supporting you. You all deserve a healing.
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I had sciatic decompression surgery w/ out piriformis release (it was not touching sciatic at all). The nerve was very compressed in scar tissue. I have 7 inch incision that's still painfull and strange nerve sensations in my legs that are more intense then prior to surgery. Surgery was just over 4 weeks ago, I thought I'd have some relief by now but I guess I need more time. Sitting is the worst.
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OOPs, I meant, Why can people in the same field of work give such differing opinions. Medical, Pt's ect... Leg lift no leg lift, trigger points no trigger points. Thanks. Menzie:-)
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Hawaiigirl:
I have not taken Flexerill or Lyrica, maybe someone else can help you on this one.
JLB:
Good to hear from you again and if I remember correctly, you weren t doing as well last time you posted as you are now so that s good news. Hope I have this right.
Menzie:
Except for the pain, the worst part of this condition in my opinion is seeing SO many different doctors with SO many different ideas about what is wrong and how to fix it. Once I found Filler, I made a promise to myself to stop searching for any other diagnosis from another doctor. I was making myself crazy. This is just what I did. I had almost no relief from the injections and have not tried any intra-vaginal stuff. Unfortunately, there s no 100% guarantee with Dr. Filler or any other doctor for that matter. So far, I feel the surgery has helped and have hope for a complete recovery. I really believe Dr. Filler is the best one to see at this point to help you and your daughter to at least find out what your next steps should be.
Update:
I had some increased pain from my 3 block walk 2 days ago so I took it easier yesterday. Still overall better and still feeling good about long-term recovery. Not much else to report from this end.
Stay positive, hopeful and know you are all in my thoughts.
Leesa
I have not taken Flexerill or Lyrica, maybe someone else can help you on this one.
JLB:
Good to hear from you again and if I remember correctly, you weren t doing as well last time you posted as you are now so that s good news. Hope I have this right.
Menzie:
Except for the pain, the worst part of this condition in my opinion is seeing SO many different doctors with SO many different ideas about what is wrong and how to fix it. Once I found Filler, I made a promise to myself to stop searching for any other diagnosis from another doctor. I was making myself crazy. This is just what I did. I had almost no relief from the injections and have not tried any intra-vaginal stuff. Unfortunately, there s no 100% guarantee with Dr. Filler or any other doctor for that matter. So far, I feel the surgery has helped and have hope for a complete recovery. I really believe Dr. Filler is the best one to see at this point to help you and your daughter to at least find out what your next steps should be.
Update:
I had some increased pain from my 3 block walk 2 days ago so I took it easier yesterday. Still overall better and still feeling good about long-term recovery. Not much else to report from this end.
Stay positive, hopeful and know you are all in my thoughts.
Leesa
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Hello Everyone,
There has been lots to read!
I'm still trying to process if the news receiced from Dr. Barbaro yesterday was good or as disappointing as I feel.
I had the sciatic notch injection on Tuesday with very, very short term relief. With that information and a nonconclusive MRN, he felt that I had less than a 50% chance surgery would be beneficial and could possibly even worsen my condition.......I hear this with tears and helplessness.....
So......today is a new day, back at square one, have already made an appt. for next week with a trigger point therapist, (one I actually haven't seen before!) I also have an appt. next week with my local neurosurgeon, will pick his brain more.
I wish you all well, will keep watching everyones progress.
I have much respect for Dr. Barbaro and appreciate his honesty.
Take care, Sadie
There has been lots to read!
I'm still trying to process if the news receiced from Dr. Barbaro yesterday was good or as disappointing as I feel.
I had the sciatic notch injection on Tuesday with very, very short term relief. With that information and a nonconclusive MRN, he felt that I had less than a 50% chance surgery would be beneficial and could possibly even worsen my condition.......I hear this with tears and helplessness.....
So......today is a new day, back at square one, have already made an appt. for next week with a trigger point therapist, (one I actually haven't seen before!) I also have an appt. next week with my local neurosurgeon, will pick his brain more.
I wish you all well, will keep watching everyones progress.
I have much respect for Dr. Barbaro and appreciate his honesty.
Take care, Sadie
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Hawaiigirl - If 5mg of Flexeril does nothing for your spasms, 10 mg will also do nothing for your muscle spams But it will make you sleepier & give you more side effects. Skelaxin is a better drug for muscle spasms.
Your pharmacist is right about Lyrica. It is really an epilepsy drug. Once you start taking it, if you want to stop, you have to wean off or you could have seizures, bad headaches, etc. It really slows down your cognitive process. They claim it is effective for nerve pain. But it is a drug I'm not willing to take.
JLB -So your diagnosis & surgery was for CAUDA EQUINA SYNDROME not Piriformis Syndrome, right? Was your problem a result of a fall?
menzie - The medical profession doesn't have all the answers - that is why you get different answers.
Have you eliminated drugs as a possible cause of the urinary problem? I went through all kinds of tests, cath & self cath & more drugs, only to discover the original problem was caused by drugs given for the back pain. In my case it was tricylics & Valium.
Sadie - I know you are disappointed that Dr. Barbaro can't fix your problem with surgery. But thank goodness you didn't have the surgery only to end up in more pain!
Your pharmacist is right about Lyrica. It is really an epilepsy drug. Once you start taking it, if you want to stop, you have to wean off or you could have seizures, bad headaches, etc. It really slows down your cognitive process. They claim it is effective for nerve pain. But it is a drug I'm not willing to take.
JLB -So your diagnosis & surgery was for CAUDA EQUINA SYNDROME not Piriformis Syndrome, right? Was your problem a result of a fall?
menzie - The medical profession doesn't have all the answers - that is why you get different answers.
Have you eliminated drugs as a possible cause of the urinary problem? I went through all kinds of tests, cath & self cath & more drugs, only to discover the original problem was caused by drugs given for the back pain. In my case it was tricylics & Valium.
Sadie - I know you are disappointed that Dr. Barbaro can't fix your problem with surgery. But thank goodness you didn't have the surgery only to end up in more pain!
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Sadie:
UUURRRGGHHH. I'm so sorry. Mary is right, thank God he didn't do surgery if he didn't feel it would benefit you. Glad you have Plan B and let us know how it's going. Cry all you need to but don't quit moving forward.
Leesa
UUURRRGGHHH. I'm so sorry. Mary is right, thank God he didn't do surgery if he didn't feel it would benefit you. Glad you have Plan B and let us know how it's going. Cry all you need to but don't quit moving forward.
Leesa
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Sadie, I'm also so sorry for your news from Dr. Barbaro. A 50% chance of success and the possibility of it worsening are not words you want to hear, but I would rather a doctor be honest. Please don't give up hope. I tried to go back on the posts to see why Dr. Filler wasn't a possibility for you to see. Any chance you could go see him? I really feel for you and will keep you in my thoughts and prayers. Hawaiigirl
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