DesertBloom
09-04-2006, 08:34 PM
Hi All: I was wondering if any of you with the above problem could explain your symptoms, chain of events that led to it, and how the problem was diagnosed (x-ray, etc)?
I have constant pain in my lumbar, rt. leg, tail bone and rt. foot that vary from moderate to severe. I've had 7 failed spinal fusions, degenerative disc disease, osteo arthritis, spinal stenosis L3-4, severe nerve damage and osteoporosis with 52% bone loss in the lumbar area.
I've been told that if I had a fracture, I wouldn't be able to walk across a small room or possibly not at all. Would those of you with this problem repaired or not, agree? I have times where the only thing I can do is stay in bed, which is multiple times each day because of the intense pain. Because I can still walk, regardless of how excruciating it is, the dr say's the pain can't be from a fracture, does this sound accurate? I'm mainly asking this question because I want to know from those who have experienced this, if you have to look for an intense increase in existing painful areas, or intense "new" pain.
If anyone could shed some light on the 1) intensity of pain , 2) physical limitations , 3) how it occured (spontaneous or not), I would appreciate it greatly.
Pam
I have constant pain in my lumbar, rt. leg, tail bone and rt. foot that vary from moderate to severe. I've had 7 failed spinal fusions, degenerative disc disease, osteo arthritis, spinal stenosis L3-4, severe nerve damage and osteoporosis with 52% bone loss in the lumbar area.
I've been told that if I had a fracture, I wouldn't be able to walk across a small room or possibly not at all. Would those of you with this problem repaired or not, agree? I have times where the only thing I can do is stay in bed, which is multiple times each day because of the intense pain. Because I can still walk, regardless of how excruciating it is, the dr say's the pain can't be from a fracture, does this sound accurate? I'm mainly asking this question because I want to know from those who have experienced this, if you have to look for an intense increase in existing painful areas, or intense "new" pain.
If anyone could shed some light on the 1) intensity of pain , 2) physical limitations , 3) how it occured (spontaneous or not), I would appreciate it greatly.
Pam
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taape
09-05-2006, 03:29 AM
I'm no expert but I think there are people walking around everyday that have spinal fractures and don't even know it. So something doesn't sound right to me about what your doctor said. Were your surgeons checking for fractures before/during/after your fusion surgeries? If your in severe pain I would think the doctor would offer you pain medication for your present diagnoses and then keep trying to find out if you do have a fracture because you sound like you desire to find this out. I hope someone with better answers comes along soon.
DesertBloom
09-05-2006, 07:03 PM
I'm no expert but I think there are people walking around everyday that have spinal fractures and don't even know it. So something doesn't sound right to me about what your doctor said. Were your surgeons checking for fractures before/during/after your fusion surgeries? If your in severe pain I would think the doctor would offer you pain medication for your present diagnoses and then keep trying to find out if you do have a fracture because you sound like you desire to find this out. I hope someone with better answers comes along soon.
Taape: Thanks for your input... Yes I've been checked for fractures in the past, but it was always something I initiated. My last x-ray was a little over a year ago, and no fractures were found. Because I have many problems the Ortho and Neuro tend to think it's just my old problems getting worse, or existing problems I may have temporarily aggravated. In the past 6 months the pain and limitations have worsened, so I'm going to have the Ortho order another x-ray to see what's going on if anything, this week. I'm also wondering if an x-ray is enough with the amount of scar tissue I have that might block the x-ray image.
I was hoping that someone could explain a specific type of pain, or movement that may have caused a fracture so I would have something to compare this to. The main thing, is when the pain is intense, it will diminish some over time, and then return. Several Dr.s have told me if it was a fracture, the pain would remain constant, but I've also heard about compression fractures that have varying types of pain that come and go, so I was just hoping someone could explain their experiences for a point of reference for me.
I'm on a pain med, but it does very little, but is better than nothing.
I'll just wait to see what the Dr. say's. I also wanted to know if anyone here had kyphoplasty after having fusions? I seems that it would be very hard to perform that procedure if not impossible because my spine is fused in the lumbar area, unless the fracture occurred above or below the fusion. I know that some people live with compression fractures, hence the widows hump, but there are different types of fractures I thought, and was hoping to find out here from someone who actually experienced it.
Thanks, Pam
Taape: Thanks for your input... Yes I've been checked for fractures in the past, but it was always something I initiated. My last x-ray was a little over a year ago, and no fractures were found. Because I have many problems the Ortho and Neuro tend to think it's just my old problems getting worse, or existing problems I may have temporarily aggravated. In the past 6 months the pain and limitations have worsened, so I'm going to have the Ortho order another x-ray to see what's going on if anything, this week. I'm also wondering if an x-ray is enough with the amount of scar tissue I have that might block the x-ray image.
I was hoping that someone could explain a specific type of pain, or movement that may have caused a fracture so I would have something to compare this to. The main thing, is when the pain is intense, it will diminish some over time, and then return. Several Dr.s have told me if it was a fracture, the pain would remain constant, but I've also heard about compression fractures that have varying types of pain that come and go, so I was just hoping someone could explain their experiences for a point of reference for me.
I'm on a pain med, but it does very little, but is better than nothing.
I'll just wait to see what the Dr. say's. I also wanted to know if anyone here had kyphoplasty after having fusions? I seems that it would be very hard to perform that procedure if not impossible because my spine is fused in the lumbar area, unless the fracture occurred above or below the fusion. I know that some people live with compression fractures, hence the widows hump, but there are different types of fractures I thought, and was hoping to find out here from someone who actually experienced it.
Thanks, Pam
taape
09-05-2006, 09:08 PM
I was wondering if you had 7 different fusion surgeries or 7 levels fused. Did your osteoporosis prevent you from fusing or did you have it then? I think that spinal fractures could occur on any of the bony parts of the spine, maybe some so small that it won't be picked up on xray, how about a bone scan?
DesertBloom
09-05-2006, 10:11 PM
I was wondering if you had 7 different fusion surgeries or 7 levels fused. Did your osteoporosis prevent you from fusing or did you have it then? I think that spinal fractures could occur on any of the bony parts of the spine, maybe some so small that it won't be picked up on xray, how about a bone scan?
Hi Taape: I had 7 seperate lumbar fusions where each fractured and or cracked into many pieces. I also had a fusion with hardware where the screws just fell out of the bone and one of them (screws) embedded itself clean through my sciatic nerve and it stayed that way for 9 mos. because the Dr. would not listen to me about the excurciating pain which was totally different from all the other post op pain. He finally had to remove all of the hardware.
I don't know if I had osteo... when all this happened because it was over a 27year period and I was only diagnosed in 2005. First surgery was 1979 from a horrific rear end car accident, being hit by a drunk driver. It's my opinion that all the fusions fractured and disentergrated from osteo... but I can't prove it, or get anyone to confirm it, but what are the odds of this happening if I didn't have some sort of bone disease. I went through very early meno... shortly after my first surgery and wasn't given estrogen plus had a family history and risk factors etc. for osteo... What baffles me is that not one dr. thought to check me for osteo... with all the problems, and I guess even if they did I don't know what meds were able back in the early 80's but if there were some maybe I wouldn't have had all these problems. Well I can't worry about that now, it's too late, but maddening just the same. BTW they won't put me on estrogen for long, or at all, because each time I would grow over a dozen cysts per breast with each mamo. All were benign thankfully, but I'm exhausted all the time with horrible night sweats and hot flashes for years.
I agree with you on a scan, because I don't have much luck with x-rays, too many negative variables that would interfere.
Good Luck again with your appt in Berkeley!!!! Hope you get a solution to post Forteo treatment that doesn't involve biophosphonates, I hate them.
Pam
Hi Taape: I had 7 seperate lumbar fusions where each fractured and or cracked into many pieces. I also had a fusion with hardware where the screws just fell out of the bone and one of them (screws) embedded itself clean through my sciatic nerve and it stayed that way for 9 mos. because the Dr. would not listen to me about the excurciating pain which was totally different from all the other post op pain. He finally had to remove all of the hardware.
I don't know if I had osteo... when all this happened because it was over a 27year period and I was only diagnosed in 2005. First surgery was 1979 from a horrific rear end car accident, being hit by a drunk driver. It's my opinion that all the fusions fractured and disentergrated from osteo... but I can't prove it, or get anyone to confirm it, but what are the odds of this happening if I didn't have some sort of bone disease. I went through very early meno... shortly after my first surgery and wasn't given estrogen plus had a family history and risk factors etc. for osteo... What baffles me is that not one dr. thought to check me for osteo... with all the problems, and I guess even if they did I don't know what meds were able back in the early 80's but if there were some maybe I wouldn't have had all these problems. Well I can't worry about that now, it's too late, but maddening just the same. BTW they won't put me on estrogen for long, or at all, because each time I would grow over a dozen cysts per breast with each mamo. All were benign thankfully, but I'm exhausted all the time with horrible night sweats and hot flashes for years.
I agree with you on a scan, because I don't have much luck with x-rays, too many negative variables that would interfere.
Good Luck again with your appt in Berkeley!!!! Hope you get a solution to post Forteo treatment that doesn't involve biophosphonates, I hate them.
Pam
SPRING RAIN
09-06-2006, 01:59 AM
Hi All: I was wondering if any of you with the above problem could explain your symptoms, chain of events that led to it, and how the problem was diagnosed (x-ray, etc)?
I have constant pain in my lumbar, rt. leg, tail bone and rt. foot that vary from moderate to severe. I've had 7 failed spinal fusions, degenerative disc disease, osteo arthritis, spinal stenosis L3-4, severe nerve damage and osteoporosis with 52% bone loss in the lumbar area.
I've been told that if I had a fracture, I wouldn't be able to walk across a small room or possibly not at all. Would those of you with this problem repaired or not, agree? I have times where the only thing I can do is stay in bed, which is multiple times each day because of the intense pain. Because I can still walk, regardless of how excruciating it is, the dr say's the pain can't be from a fracture, does this sound accurate? I'm mainly asking this question because I want to know from those who have experienced this, if you have to look for an intense increase in existing painful areas, or intense "new" pain.
If anyone could shed some light on the 1) intensity of pain , 2) physical limitations , 3) how it occured (spontaneous or not), I would appreciate it greatly.
Pam
I have constant pain in my lumbar, rt. leg, tail bone and rt. foot that vary from moderate to severe. I've had 7 failed spinal fusions, degenerative disc disease, osteo arthritis, spinal stenosis L3-4, severe nerve damage and osteoporosis with 52% bone loss in the lumbar area.
I've been told that if I had a fracture, I wouldn't be able to walk across a small room or possibly not at all. Would those of you with this problem repaired or not, agree? I have times where the only thing I can do is stay in bed, which is multiple times each day because of the intense pain. Because I can still walk, regardless of how excruciating it is, the dr say's the pain can't be from a fracture, does this sound accurate? I'm mainly asking this question because I want to know from those who have experienced this, if you have to look for an intense increase in existing painful areas, or intense "new" pain.
If anyone could shed some light on the 1) intensity of pain , 2) physical limitations , 3) how it occured (spontaneous or not), I would appreciate it greatly.
Pam
SPRING RAIN
09-06-2006, 02:13 AM
:wave: HELLO, I HAVEN'T POSTED ANYTHING ON THE BOARDS BEFORE SO PLEASE BEAR WITH ME IF I SCREW UP. I WAS RECENTLY DIAGNOSED WITH
OSTEOPOROSIS AND MY SPINE IS 2.1 ALL MY VERTEBRAE ARE FRACTURED AND ALTHOUGH I DO LIVE WITH A LOT OF PAIN I AM STILL UP AND MOVING. I WILL ADMIT I HAVE SLOWED DOWN A LOT BUT I DON'T STAY IN BED. SINCE I HAVE FIBROMYALGIA I THOUGHT IT WAS FLARING AND CREATING THE PAIN BUT IT HAS BEEN BOTH PROBLEMS CREATING THE PAIN. I ONLY HAD A CAT SCAN OF MY BACK (AFTER AN XRAY SHOWED THE FRACTURES) AND I HAVE A LOT TO LEARN. THE SYMPTOMS YOU DESCRIBED ARE NOT AT ALL SIMILAR TO MINE BUT I THINK YOU SHOULD GET SOME TESTS DONE TO FIND OUT EXACTLY WHAT IS HAPPENING. GOOD LUCK TO YOU.
SPRING RAIN
OSTEOPOROSIS AND MY SPINE IS 2.1 ALL MY VERTEBRAE ARE FRACTURED AND ALTHOUGH I DO LIVE WITH A LOT OF PAIN I AM STILL UP AND MOVING. I WILL ADMIT I HAVE SLOWED DOWN A LOT BUT I DON'T STAY IN BED. SINCE I HAVE FIBROMYALGIA I THOUGHT IT WAS FLARING AND CREATING THE PAIN BUT IT HAS BEEN BOTH PROBLEMS CREATING THE PAIN. I ONLY HAD A CAT SCAN OF MY BACK (AFTER AN XRAY SHOWED THE FRACTURES) AND I HAVE A LOT TO LEARN. THE SYMPTOMS YOU DESCRIBED ARE NOT AT ALL SIMILAR TO MINE BUT I THINK YOU SHOULD GET SOME TESTS DONE TO FIND OUT EXACTLY WHAT IS HAPPENING. GOOD LUCK TO YOU.
SPRING RAIN
BrittleBones
09-06-2006, 07:52 AM
Hi DesertBloom and Welcome to My World!!! We must be living each other's lives in a parallel universe somewhere because your story is so similar to mine!! I've suffered from osteoporosis for about 15 years that I'm aware of and the process started after a very early surgical hysterectomy put me in early menopause at age 23. That was in early 80 and like you, nobody spoke about estrogen replacement hormones. So by the time I had reached 35, by bones were starting to thin out. I experienced my first vertebral fracture at age 43. It was spontaneous, meaning I didn't fall or have any traumatic injury. I absolutely DID walk around with it for at least 6 months before I headed off to an orthopedic surgeon. The symptoms I had were pain, inability to strand up straight, some weakness, some pain radiating down my back, buttocks and right leg. Xrays and CT scan showed the fracture. I went to a great surgeon at Johns Hopkins and he fused above and below the fracture. Unfortunately, this started a domino effect that ended up with almost my entire vertabrae (except for my cervical spine) fracturing at one point or another and now I am fused through most of my spine. I have had kyphoplasty as well. In addition, because so many of my vertabrae were fused, my SI (sacral) joints started to try and compensate for lack of movement in my spine by moving more than SI joints are intended to move which caused me tremendous pain. So I had to have those joints fused as well. It's just amazing what osteoporosis can do to a person! My last treatment for osteo was Forteo which I finished taking a year ago. After a follow up DEXA scan, my bones showed no improvement and my spine and my hips are in the -3.27 range. Oh yes, I also spontaneously fractured my right hip last year and had a hip replacement which itself had to be replaced after I came home from surgery only to have my femur on the same side break spontaneously. I have to say that out of all my fractures, only the hip fracture made it hard for me to walk, and even with that fracture I walked on it for at least 3 weeks before it became to unbearable that it made me cry and I finally went to the doctor. So I would have to disagree with your doctor on his statement that you couldn't possibly have a fracture because you can still walk from point A to point B. Heck, I could walk around the block and did so for many weeks with broken bones. I'd keep pursuing the matter until you get an answer! I'm on my way this morning for an MRI of my new hip because for the past month I'm in really horrible pain. Nothing is showing up on an xray because of all the metal and plastic, etc. in that new hip, and I don't even know if an MRI will be of any help in diagnosing what's causing me so much pain, but I hope it will give my surgeon an idea of what's going on. I sure hope you get some answers. Keep us posted, I'm especially interested in your story because it's so similar to mine. All the very best to you - don't give up - KathyMac:wave:
DesertBloom
09-06-2006, 05:13 PM
Hi KathyMac: Glad to hear from you. Thanks for explaining how you were able to walk with a fracture; I thought it was certainly possible, but you know how insistent drs can be. You mentioned how you had your spine fused above and below a fracture; did you have kyphoplasty at the fracture, or some other spot in the spine and did it help? One of my concerns is that domino effect you mentioned, because I know how a fusion can force the area above and below to work harder and then you can injure that. Luckily my fusions were in the same area. What I didn’t mention, was that my 7th surgery was a fusion and some more hardware, and so far I don’t think it has cracked or the hardware has moved, but we’ll see. Because of the constant pain, I don’t consider it a major success, but I guess it could be worse.
I’m so sorry to hear that Forteo didn’t help you!! I started that in April, but have been temporarily taken off of it for 2 mos due to a slightly elevated calcium level. Biophosphonates (Actonel) didn’t help me so I was kind of pinning all my hopes on Forteo. I’m back on Actonel temporarily, and I really do hate the stabbing/bone pain it causes. I also have some stomach problems with it, but it’s not too bad so I’m putting up with it. What I hate is the pain I get all over that comes on like a knife stab, but fortunately goes away in at least 15 secs. The pain is so annoying because it’s startling, and can stop you dead in your tracks but thankfully goes away.
Are you able to do weight bearing exercises with all the fractures? I don’t know if I could handle your hip, spine, and then femur problems, it must be tough. Has you t-score ever progressed past -3.2?
My t-score, as of the last scan, was -3.4 and I’ve only had the fusion problems, and even with that no one will call them fractures, or spontaneous fractures. I wonder what you call a fusion that cracks from top to bottom or into bits, 6 times ;) I’m also recovering from rotator cuff surgery, but with that I’m doing quite well at 10 weeks post op. I’m amazed that a person can actually have a successful surgery; I forgot what that’s like. I’m just keeping my fingers crossed that the pin the dr put into my shoulder doesn’t fall out. He mentioned that does happen with a t-score like mine, but the patients were in their 90’s like that would somehow make it more comforting.
Do you or the drs have any clues as to why your new hip hurts so bad? Good luck with the MRI, I hope they figure something out.
I’m seeing a specialist now and hope she has some solutions. I wish you and everyone else all the luck in the world.
Pam
I’m so sorry to hear that Forteo didn’t help you!! I started that in April, but have been temporarily taken off of it for 2 mos due to a slightly elevated calcium level. Biophosphonates (Actonel) didn’t help me so I was kind of pinning all my hopes on Forteo. I’m back on Actonel temporarily, and I really do hate the stabbing/bone pain it causes. I also have some stomach problems with it, but it’s not too bad so I’m putting up with it. What I hate is the pain I get all over that comes on like a knife stab, but fortunately goes away in at least 15 secs. The pain is so annoying because it’s startling, and can stop you dead in your tracks but thankfully goes away.
Are you able to do weight bearing exercises with all the fractures? I don’t know if I could handle your hip, spine, and then femur problems, it must be tough. Has you t-score ever progressed past -3.2?
My t-score, as of the last scan, was -3.4 and I’ve only had the fusion problems, and even with that no one will call them fractures, or spontaneous fractures. I wonder what you call a fusion that cracks from top to bottom or into bits, 6 times ;) I’m also recovering from rotator cuff surgery, but with that I’m doing quite well at 10 weeks post op. I’m amazed that a person can actually have a successful surgery; I forgot what that’s like. I’m just keeping my fingers crossed that the pin the dr put into my shoulder doesn’t fall out. He mentioned that does happen with a t-score like mine, but the patients were in their 90’s like that would somehow make it more comforting.
Do you or the drs have any clues as to why your new hip hurts so bad? Good luck with the MRI, I hope they figure something out.
I’m seeing a specialist now and hope she has some solutions. I wish you and everyone else all the luck in the world.
Pam
DesertBloom
09-06-2006, 05:21 PM
:wave: HELLO, I HAVEN'T POSTED ANYTHING ON THE BOARDS BEFORE SO PLEASE BEAR WITH ME IF I SCREW UP. I WAS RECENTLY DIAGNOSED WITH
OSTEOPOROSIS AND MY SPINE IS 2.1 ALL MY VERTEBRAE ARE FRACTURED AND ALTHOUGH I DO LIVE WITH A LOT OF PAIN I AM STILL UP AND MOVING. I WILL ADMIT I HAVE SLOWED DOWN A LOT BUT I DON'T STAY IN BED. SINCE I HAVE FIBROMYALGIA I THOUGHT IT WAS FLARING AND CREATING THE PAIN BUT IT HAS BEEN BOTH PROBLEMS CREATING THE PAIN. I ONLY HAD A CAT SCAN OF MY BACK (AFTER AN XRAY SHOWED THE FRACTURES) AND I HAVE A LOT TO LEARN. THE SYMPTOMS YOU DESCRIBED ARE NOT AT ALL SIMILAR TO MINE BUT I THINK YOU SHOULD GET SOME TESTS DONE TO FIND OUT EXACTLY WHAT IS HAPPENING. GOOD LUCK TO YOU.
SPRING RAIN
Spring Rain: Hi, glad to hear from you. What are your drs going to do about all the fractures? You're still able to get around? When you say your spine is 2.1, do you mean your t-score is that? I don't know anything about fibromyalgia but I wish you luck with it. I'm no expert but doesn't a t-score of 2.1 mean you have osteopenia? I hope that is the case and you don't have osteoporosis, but what do I know, check it out somewhere. Are you taking any meds for your t-score? I hope you get the help you need...
Pam
OSTEOPOROSIS AND MY SPINE IS 2.1 ALL MY VERTEBRAE ARE FRACTURED AND ALTHOUGH I DO LIVE WITH A LOT OF PAIN I AM STILL UP AND MOVING. I WILL ADMIT I HAVE SLOWED DOWN A LOT BUT I DON'T STAY IN BED. SINCE I HAVE FIBROMYALGIA I THOUGHT IT WAS FLARING AND CREATING THE PAIN BUT IT HAS BEEN BOTH PROBLEMS CREATING THE PAIN. I ONLY HAD A CAT SCAN OF MY BACK (AFTER AN XRAY SHOWED THE FRACTURES) AND I HAVE A LOT TO LEARN. THE SYMPTOMS YOU DESCRIBED ARE NOT AT ALL SIMILAR TO MINE BUT I THINK YOU SHOULD GET SOME TESTS DONE TO FIND OUT EXACTLY WHAT IS HAPPENING. GOOD LUCK TO YOU.
SPRING RAIN
Spring Rain: Hi, glad to hear from you. What are your drs going to do about all the fractures? You're still able to get around? When you say your spine is 2.1, do you mean your t-score is that? I don't know anything about fibromyalgia but I wish you luck with it. I'm no expert but doesn't a t-score of 2.1 mean you have osteopenia? I hope that is the case and you don't have osteoporosis, but what do I know, check it out somewhere. Are you taking any meds for your t-score? I hope you get the help you need...
Pam