F
flyonthewall
Guest
But is the sports med guy a spine specialist? Does he have a spine fellowship.
C
carrot16
Guest
It is so comforting to know that others understand and have gone through these problems with doctors. Qietcook and Wingingit thanks so much for your replies. It has been so frustrating to go through this constant pain and have to beg for diagnostic tests. My surgeon finally decided that I should have some pain management, so he said he'd call my primary to prescribe. After waiting weeks for that to take place my primary finally heard from him and gave me some pain medication. I don't understand this guy at all. He sits there and says," I don't want you to suffer like this," but he won't order any tests and won't prescribe anything for pain. Ah well, I'm done with him now and I have an appointment with another spine specialist on the 10th. As far as the scapula goes I do have winging. I did have some before the surgery, but it's much worse now. So is he pain. I have weakness in my arm that I didn't have before and I get pins and needles all the time. Nothing in my life has ever hurt like this constant stabbing pain in my scapula. Post op it was all I could feel. It kept me awake for an entire week and after a week with no sleep I couldn't think straight and I fell down the stairs trying to go get a cup of coffee at 7AM. The surgical pain was minimal, but the scapula was and is horrible. I kept telling myself that it would go away as I healed to try and get through, but it never did. Finally now after 5 months of constant suffering I have some pain control, but truthfully I don't think they make enough meRAB to stop this pain. I literally spend my life trying to find a position that I can tolerate. I am sure you guys know how this is, so I won't go on about it anymore. Thanks for letting me get it out. It's so good just to be able to tell someone. By the way I asked my primary about seeing a neurologist in addition to the new ortho and he said he'd consider it after my first visit with the new guy. I figure I might as well try to get the docs lined up in advance since it seems like I'm probably going to have to see many a spine specialist before I hit the right one. Thanks for the advice.
W
Wingingit
Guest
(((HUGS))) carrot
It is so very frustrating (for lack of a better word) when these docs mess you up and then send you on your way telling you there is nothing they can do and trivializing your pain. I would definitely keep putting on the pressure to get a proper diagnosis from a qualified neurologist. It is very important that a well qualified neurologist perform the EMG/NCV testing, since there is much skill and precision required to get an accurate diagnosis with these tests. The test can be "uncomfortable" and there are risks which must be considered, however, since this injury will not show up on a CT or MRI, it is really the only way to confirm the extent of nerve injury.
I was told that this is a very "rare" injury (somehow that makes it less significant?) , but in the past 5 years have communicated with dozens of "wingers"...most in the same position...lacking a proper diagnosis, suffering from inadequate pain control, and lacking solutions.
Fortunately, some wingers do recover fully, but others such as myself do not.
I was originally told that my nerve would regenerate completely in 3-6 months...not sure where they get these stats, because it just isn't the case for the majority. I wish there was a way we could band together to bring awareness to the medical community. Because our nurabers are few, and our disability is relatively invisible, we are on the bottom of the priority list, it seems.
There is a PT in the UK by the name of Steven Fromm who has done extensive research into scapular winging. If you do a search you will find some valuable information. If you arm yourself with knowledge, it is much easier to know what questions you need to ask the specialists.
I pray you will be one of the lucky ones who sees a full recovery from this, but if you don't, these diagnostics could prove to be vital in future.
As far as the TENS goes...my advice would be to "rent" a unit and try it out for a while before you put out the $$$ to purchase one. I bought a unit which cost me in excess of $500 and I found it to be of little use. Some people have tremendous success with these units, but it is a very individual thing. Unfortunately, you need a doctors Rx to purchase or ship these units...unfortunate because I would gladly give you mine if it were possible.
Try searching for "brachial plexus nerve injury" and "winged scapula" on the web...there is a wealth of info available.
All the best. Please keep us updated on your progress.
It is so very frustrating (for lack of a better word) when these docs mess you up and then send you on your way telling you there is nothing they can do and trivializing your pain. I would definitely keep putting on the pressure to get a proper diagnosis from a qualified neurologist. It is very important that a well qualified neurologist perform the EMG/NCV testing, since there is much skill and precision required to get an accurate diagnosis with these tests. The test can be "uncomfortable" and there are risks which must be considered, however, since this injury will not show up on a CT or MRI, it is really the only way to confirm the extent of nerve injury.
I was told that this is a very "rare" injury (somehow that makes it less significant?) , but in the past 5 years have communicated with dozens of "wingers"...most in the same position...lacking a proper diagnosis, suffering from inadequate pain control, and lacking solutions.
Fortunately, some wingers do recover fully, but others such as myself do not.
I was originally told that my nerve would regenerate completely in 3-6 months...not sure where they get these stats, because it just isn't the case for the majority. I wish there was a way we could band together to bring awareness to the medical community. Because our nurabers are few, and our disability is relatively invisible, we are on the bottom of the priority list, it seems.
There is a PT in the UK by the name of Steven Fromm who has done extensive research into scapular winging. If you do a search you will find some valuable information. If you arm yourself with knowledge, it is much easier to know what questions you need to ask the specialists.
I pray you will be one of the lucky ones who sees a full recovery from this, but if you don't, these diagnostics could prove to be vital in future.
As far as the TENS goes...my advice would be to "rent" a unit and try it out for a while before you put out the $$$ to purchase one. I bought a unit which cost me in excess of $500 and I found it to be of little use. Some people have tremendous success with these units, but it is a very individual thing. Unfortunately, you need a doctors Rx to purchase or ship these units...unfortunate because I would gladly give you mine if it were possible.
Try searching for "brachial plexus nerve injury" and "winged scapula" on the web...there is a wealth of info available.
All the best. Please keep us updated on your progress.
C
carrot16
Guest
Also, quietcook and wingingit, if you don't mind, I'd like to know what injuries you guys had or have. You have both obviously been through a lot and you have so much knowledge to offer. I just wondered what you guys are going through. Thanks for taking time out from everything to give me support. You are terrific.
C
carrot16
Guest
I have had severe left scapular pain for years now. I also had neck pain which was releived by a spinal fusion of C5-6 3 months ago. The problem is that although I told both my orthopedic surgeon and my neurosurgeon that I thought these problems were separate, they insisted that the scapular/ arm pain would be relieved by the surgery. Well the pain is not relieved and now I can't seem to get a diagnosis. If anyone has suggestions I would appreciate any help. It feels as though someone is stabbing me with a knife underneath my left scapula constantly. I've had some diagnostic tests after begging for them, but no real answer. I have scoliosis, bone spurring, and an arthritic rib on x-ray. I had an MRI which shows dorsal spondylosis at one of the thoraciclevels, but my doc says it's too low to account for the pain I'm having. This has been going on for years and has ruined my life. I am always in pain. I cannot work and don't have any income. Each time I see my doctor,(the orthopedic surgeon,) I leave in tears feeling as if I'm getting nowhere. I really need help and don't know where to turn. I used to be very active and not being able to do anything is really adversely affecting me. If anyone has had something like this and found a solution please help me.
C
carrot16
Guest
Well, I see the new spine guy tomorrow morning. I hope this one goes well. I'll let you know how he is. Wingingit, I hope you're doing well. Your support has been tremendous. I'll bring my bazillion films in and hope this doc will be the one to get it right. Maybe I can actually get the dx for this problem,( the worst one,) to add to the long list of others I have. Sorry to sound so down, but I've been to see so many before. I guess I don't want to get my hopes up too high. I'll just hang in there. One thing's for sure, the support here makes all the difference. Thanks!
C
carrot16
Guest
I'm not sure if he is a spine specialist or not. He did do my spinal fusion. How can I find out if he is? If he isn't, how do I find one? Thanks again for the help. Also I went for my annual hematology consult today and that doc suggested that I see a neurologist. Any idea how to find a good one of those? Oddly enough he didn't make a recommendation.
C
carrot16
Guest
Well I just got back from my appointment with the new doc and I'm very frustrated. He said I have weakness in the muscles that control the scapula possibly related to nerve damage from the surgery, but he also thinks I have spinal inflammation from my arthritis and need to have cortisone injections around T6,T7, and T8. He gave me a shot in the shoulder to rule out any rotator cuff problem, which I guess it did because he said it should have worked immediately if the pain was from there. He did an EMG, but was very vague about the results saying only that there were some changes and maybe nerve damage. He was talking about nerve blocks with botox too, do you know anything about that? I really don't know what to make of this guy. He said he'd know more after he talked to my surgeon, (they're in the same practice.) Shouldn't he be able to formulate an opinion for himself? He also wants me back in PT,( even though it causes me more pain,) for the weakness. He said if it exacerbates things again to stop it. Well, I'm just plain confused. It was almost as if he was talking to himself,( at some points he admitted he was when I asked a question about what he said,) instead of talking with me. God I wish all this would end so I could get back to normal. I guess I'll see what happens next since I really have no choice,huh? If anybody has a take on this please let me know. Thanks.
W
Wingingit
Guest
Hi carrot16
My history is a long one but I'll try to explain it as briefly as possible.
I was admitted to the ER in the summer of 2000 with severe abdominal pain.
I woke up after a 6 hour surgery with weakness in my right arm (couldn't raise my arm over my head in the shower). The pain at this point was not too bad, but I was on a morphine pump for surgical pain, so undoubtedly covering up the scapula pain also. I was told that this was normal surgical weakness (?) which I bought at the time (I was just happy to be alive). After weeks of the pain in my scapula being unbearable I noticed my scapula was winging.
It took 6 months to get an app. with a neurologist for an EMG (only in Canada eh) and then another 4 months to be refered to a neurosurgeon.
At this point the neuro said that, had I seen him at 3 months he could have repaired the injured long thoracic nerve, but now it was too late and prescribed PT.
I went to 3 different PT's over the course of 4 years and none of them really had a clue what to do with me. They were having me do strengthening exercises (which I found out later from other wingers is a definitely NO NO with this condtion...you cannot strengthen a muscle which is not receiving any nerve impulses.
One of the PT's did what he called a "1st rib adjustment" which involved thrusting at the base of my neck. To date, I don't know why I let him do this!
Desperation had set in I suppose. The result of this was a "whiplash" injury and a diagnosis of bulging cervical disks encroaching on nerves, stenosis in arthritis at 3 levels and...constant neck pain...that I never had originally.
For years I was denied any pain meRAB stronger than T3 and was petty much confined to the couch. In 2004 I was finally prescribed Oxycontin, which did help some but the dosage has never been adequate to cover my pain levels.
I can only sit, walk do minor household chores for an hour or so at a time...so I am still very limited in my activities. I can't travel any distance or make any plans. I need to lie down on an ice pack/heating pad several times a day just to cope...
On the bright side...my scapula pain has eased some and I can now raise my arm to shoulder height...so I am trying to be optomistic that things are improving. I know that if my docs could only understand the amount of chronic pain that goes along with this injury (and how the serratus weakness throws off your entire upper body, leading to pain in the neck and the opposite shoulder)
and would prescribe adequate pain meRAB, I would be much more functional...that's the part that angers me...and you...rightly so.
Please keep up the good fight for answers and the pain relief you need and let me know if there is anything I can do to help.
Be cautious of physiotherapists who have never dealt with this injury but say they can "fix" you...run the other way. You need a therapist who understanRAB nerve injuries and particularly those which innervate the scapula.
A PT who views this as solely a "muscular" problem will only cause you more grief...whatever you do, my advice is not to let them mess with your neck!
I know this post is not very uplifting, I am sorry...but this injury neeRAB to understood for what it is...a nerve injury. Injured nerves may or may not heal and when they do, it is a very slow process...there is really no quick fix. You will have to be as patient and take it a day at a time.
Hang in there.
My history is a long one but I'll try to explain it as briefly as possible.
I was admitted to the ER in the summer of 2000 with severe abdominal pain.
I woke up after a 6 hour surgery with weakness in my right arm (couldn't raise my arm over my head in the shower). The pain at this point was not too bad, but I was on a morphine pump for surgical pain, so undoubtedly covering up the scapula pain also. I was told that this was normal surgical weakness (?) which I bought at the time (I was just happy to be alive). After weeks of the pain in my scapula being unbearable I noticed my scapula was winging.
It took 6 months to get an app. with a neurologist for an EMG (only in Canada eh) and then another 4 months to be refered to a neurosurgeon.
At this point the neuro said that, had I seen him at 3 months he could have repaired the injured long thoracic nerve, but now it was too late and prescribed PT.
I went to 3 different PT's over the course of 4 years and none of them really had a clue what to do with me. They were having me do strengthening exercises (which I found out later from other wingers is a definitely NO NO with this condtion...you cannot strengthen a muscle which is not receiving any nerve impulses.
One of the PT's did what he called a "1st rib adjustment" which involved thrusting at the base of my neck. To date, I don't know why I let him do this!
Desperation had set in I suppose. The result of this was a "whiplash" injury and a diagnosis of bulging cervical disks encroaching on nerves, stenosis in arthritis at 3 levels and...constant neck pain...that I never had originally.
For years I was denied any pain meRAB stronger than T3 and was petty much confined to the couch. In 2004 I was finally prescribed Oxycontin, which did help some but the dosage has never been adequate to cover my pain levels.
I can only sit, walk do minor household chores for an hour or so at a time...so I am still very limited in my activities. I can't travel any distance or make any plans. I need to lie down on an ice pack/heating pad several times a day just to cope...
On the bright side...my scapula pain has eased some and I can now raise my arm to shoulder height...so I am trying to be optomistic that things are improving. I know that if my docs could only understand the amount of chronic pain that goes along with this injury (and how the serratus weakness throws off your entire upper body, leading to pain in the neck and the opposite shoulder)
and would prescribe adequate pain meRAB, I would be much more functional...that's the part that angers me...and you...rightly so.
Please keep up the good fight for answers and the pain relief you need and let me know if there is anything I can do to help.
Be cautious of physiotherapists who have never dealt with this injury but say they can "fix" you...run the other way. You need a therapist who understanRAB nerve injuries and particularly those which innervate the scapula.
A PT who views this as solely a "muscular" problem will only cause you more grief...whatever you do, my advice is not to let them mess with your neck!
I know this post is not very uplifting, I am sorry...but this injury neeRAB to understood for what it is...a nerve injury. Injured nerves may or may not heal and when they do, it is a very slow process...there is really no quick fix. You will have to be as patient and take it a day at a time.
Hang in there.
Q
Quietcook
Guest
Carrot,
Sorry I had not checked your post of questions on the 2nd. I'll try to answer that in a minute.
First, let me say that I'm not exactly prone to get a second opinion from another partner in the same practice. It goes along with the same grain that I don't want a diagnosis from a doc based on another doctor's diagnosis, but I want the doctor to look at the xrays and lab results if necessary, do a comprehensive exam themself and then give me a diagnosis, because if they are influenced by another opinion, they might not look hard enough to catch something. Just my opinion, so when I need a second opinion, I go to a totally outside source.
Secondly, I'd be extremely concerned about any steroid injectons unless your fusion has totally cured. SteroiRAB can keep bmp from fusing. I am 8 months post op with the 10 level fusion, and while I am fused, my spine specialist does not feel that this massive fusion will be well cured until at least 18 months.
I was having lots of arthritis problems in the rest of my body post surgery, and of course I was not allowed to take my NSAIRAB for more than 6 months. Was afraid my joints would all lock up, but my spine specialist recommended I start taking the glucosamine/chondroitin triple strength, twice a day. Took several weeks before I could truly notice the change, as I've had arthrtis for more than 35 years. However, it did help a lot, and I'm continuing it now, because my knees are not grinding anymore. I would love to avoid having knee replacements. My mother needed knee replacements, but her really bad heart, it's not something you jump into. So, I spoke with her doc and we started her on the same thing. She rarely complains with knee pain anymore even though we've cut back on her pain meRAB. You may wish to speak with your doc about trying these.
Haven't tried the botox, but one of the neuro docs I saw before I found my true spine specialist wanted to try botox. Have read some about it being used to treat nerve pain, but don't know anyone who actually had that treatment for back pain. I do know someone who had botox injections for a severe facial twitch, and it helped that though, so imagine it is used in multiple ways.
Now, you had asked what our back problems had been. I had never had back problems prior to retirement. My brother was the poor soul who suffered with his back, due to all that parachuting in his many years of military service. Well, woke from a nap one day and wham! My leg collapsed and I was screaming in pain. Was seen immediately by ortho and neuro surgeons and I had a large herniated disk INTO the spinal cord. Emergenery disckectomy/laminectomy. Immediate relief upon waking from surgery and back into things a few days later. Then, about 5 months later, pain, but had use of my legs. What was bad was the fact that I was bent at the waist and the only way I could straighten up was to hold my left leg off the floor like a crane. If I walked I was severely bent over like some of these elderly we see who have degenerative spines. MRI, discogram and myleogram followed and then was told they needed to do Facet Joint Injections at L3 through L5. I was paralyzed and lost use of legs and bodily functions. All was good talk with the docs until I got out of the hospital. Then, it was not prudent for them to talk with me, I suppose they feared a law suit even though I had never been upset with them. They did not do the injections, as they used the hospitals anesthesia department, as is the standard practice around here. I wasn't even upset at him, as we sign a paper that all tests carry risks.
More EMG, MRI's, bone scans, Discograms, Foraminal Injectons after I found a super spine specialist. That was when I found out the other surgeons, neither the ortho or neuro had bothered to let me know that by postponing surgery right away with the severe compression, permanent damage was being done to the nerve. It was already 10 months I was bent over with this compression and I was extremely lucky that I was left with only nurab toes and no permanent critical pain. So, naturally this means I then had decompressive lurabar laminectomy, 3 level fusion, posterior instrumentation, Osteotomy, cages, bone graft (this was prior to BMP being approved), SCM, three blood patches Sac/spinal fluid leaks. The doc had warned me that the hip would be worse than the back pain after surgery and he did not lie. Then followed up a few days after being released by developing blood clots and my legs swelled so large that the skin split, so was hospitalized and treated for a couple of weeks with multiple injections in the stomach to eliminate the blood clots, so that I would not have to stay on coumadin for the rest of my life.
About 17 months later had the hardware removed as I was doing all my normal stuff and the muscles did not like rubbing over those screws. But that was a 45 minute out patient surgery, and I bounced right back from that.
Later, I had several MRI's and three out patient surgeries to drain fluid and have FSI injections. Fluid kept building up where the hardware had been and causing pressure on nerves, thus lots of pain. Next there was another myelogram with contract followed by CT scan and a delayed CT, another fuild drain, and yet another bone scan, and SI injections. A few months later, diskogram and injections, all which was repeated 5 months later due to changes.
Then I was in a wreck the day of the last diskogram, only about 5-6 months after the hardware was removed, and the impact broke my fusion. I got x-rays immediately but nothing showed up in the standard films. Later as the pain did not subside, new approaches and films showed that it not only was broken, but was crurabling. So, 2 days after BMP was approved, the spine specialist who had already trained on the BMP and we had discussed it at earlier visits, did an anterior approach to clean out the debris of the crurabled fusion, used new type cages and the bmp to fuse me again. Wasn't long until more levels collapsed and I had to have 3 more levels fused, so now I was fused from L1 through S1.
Maybe 8 months goes by and I have to have FSI/SI injections two times about 6 weeks apart, then I do okay for about 4 months. Another MRI, discogram and another CT w/contrast. In the last 3 months my vertebrae had slipped severely off the side of each other and I was at risk for total paralyzation so surgery scheduled. Just 8 months ago, I had posterior spinal fusion, T10 all the way through S3, Posterior lurabar interbody fusion L1-L3, Reduction of dislocations at L1 through L3, placement of segmental instrumentation and pedicle screws T10 through S3, a re-do of bilateral lurabar laminotomies, Le through S1, Bilateral lurabar laminotomies L1 through L3, Thoracic laminotomies T10 through T12, Laminectomy at S2, Posterio osteotomies L1 through L3, and Placement of interbody fusion cages. The end result was that I was cut from the upper shoulder blades down to unspoken places and everything peeled back for this work. It was a very rough 12 1/2 hr surgery and an extremely rough first couple of months with the terrible muscle spasms.
But, at a little over 3 months I was able to be back out working in my flowers and doing other yard work, I was maintaining my home and still am.
Here at 8 months I still use Lidoderm patches some, and ultram when I need more, but I am extremely active. No longer can bend except at the hips, but with the sock aid and my reachers I can still remain independent and go, go, go.
I'm probably older than you, and heaven knows I'm a tough bird. In between these, there were other surgeries for both myself and my mother, but I do listen to the docs and do as they direct. Ask lots of questions about what is okay and my doc agrees that being active is best.
Hope that info helps. Best wishes and keep us up to date on yourself.
Sorry I had not checked your post of questions on the 2nd. I'll try to answer that in a minute.
First, let me say that I'm not exactly prone to get a second opinion from another partner in the same practice. It goes along with the same grain that I don't want a diagnosis from a doc based on another doctor's diagnosis, but I want the doctor to look at the xrays and lab results if necessary, do a comprehensive exam themself and then give me a diagnosis, because if they are influenced by another opinion, they might not look hard enough to catch something. Just my opinion, so when I need a second opinion, I go to a totally outside source.
Secondly, I'd be extremely concerned about any steroid injectons unless your fusion has totally cured. SteroiRAB can keep bmp from fusing. I am 8 months post op with the 10 level fusion, and while I am fused, my spine specialist does not feel that this massive fusion will be well cured until at least 18 months.
I was having lots of arthritis problems in the rest of my body post surgery, and of course I was not allowed to take my NSAIRAB for more than 6 months. Was afraid my joints would all lock up, but my spine specialist recommended I start taking the glucosamine/chondroitin triple strength, twice a day. Took several weeks before I could truly notice the change, as I've had arthrtis for more than 35 years. However, it did help a lot, and I'm continuing it now, because my knees are not grinding anymore. I would love to avoid having knee replacements. My mother needed knee replacements, but her really bad heart, it's not something you jump into. So, I spoke with her doc and we started her on the same thing. She rarely complains with knee pain anymore even though we've cut back on her pain meRAB. You may wish to speak with your doc about trying these.
Haven't tried the botox, but one of the neuro docs I saw before I found my true spine specialist wanted to try botox. Have read some about it being used to treat nerve pain, but don't know anyone who actually had that treatment for back pain. I do know someone who had botox injections for a severe facial twitch, and it helped that though, so imagine it is used in multiple ways.
Now, you had asked what our back problems had been. I had never had back problems prior to retirement. My brother was the poor soul who suffered with his back, due to all that parachuting in his many years of military service. Well, woke from a nap one day and wham! My leg collapsed and I was screaming in pain. Was seen immediately by ortho and neuro surgeons and I had a large herniated disk INTO the spinal cord. Emergenery disckectomy/laminectomy. Immediate relief upon waking from surgery and back into things a few days later. Then, about 5 months later, pain, but had use of my legs. What was bad was the fact that I was bent at the waist and the only way I could straighten up was to hold my left leg off the floor like a crane. If I walked I was severely bent over like some of these elderly we see who have degenerative spines. MRI, discogram and myleogram followed and then was told they needed to do Facet Joint Injections at L3 through L5. I was paralyzed and lost use of legs and bodily functions. All was good talk with the docs until I got out of the hospital. Then, it was not prudent for them to talk with me, I suppose they feared a law suit even though I had never been upset with them. They did not do the injections, as they used the hospitals anesthesia department, as is the standard practice around here. I wasn't even upset at him, as we sign a paper that all tests carry risks.
More EMG, MRI's, bone scans, Discograms, Foraminal Injectons after I found a super spine specialist. That was when I found out the other surgeons, neither the ortho or neuro had bothered to let me know that by postponing surgery right away with the severe compression, permanent damage was being done to the nerve. It was already 10 months I was bent over with this compression and I was extremely lucky that I was left with only nurab toes and no permanent critical pain. So, naturally this means I then had decompressive lurabar laminectomy, 3 level fusion, posterior instrumentation, Osteotomy, cages, bone graft (this was prior to BMP being approved), SCM, three blood patches Sac/spinal fluid leaks. The doc had warned me that the hip would be worse than the back pain after surgery and he did not lie. Then followed up a few days after being released by developing blood clots and my legs swelled so large that the skin split, so was hospitalized and treated for a couple of weeks with multiple injections in the stomach to eliminate the blood clots, so that I would not have to stay on coumadin for the rest of my life.
About 17 months later had the hardware removed as I was doing all my normal stuff and the muscles did not like rubbing over those screws. But that was a 45 minute out patient surgery, and I bounced right back from that.
Later, I had several MRI's and three out patient surgeries to drain fluid and have FSI injections. Fluid kept building up where the hardware had been and causing pressure on nerves, thus lots of pain. Next there was another myelogram with contract followed by CT scan and a delayed CT, another fuild drain, and yet another bone scan, and SI injections. A few months later, diskogram and injections, all which was repeated 5 months later due to changes.
Then I was in a wreck the day of the last diskogram, only about 5-6 months after the hardware was removed, and the impact broke my fusion. I got x-rays immediately but nothing showed up in the standard films. Later as the pain did not subside, new approaches and films showed that it not only was broken, but was crurabling. So, 2 days after BMP was approved, the spine specialist who had already trained on the BMP and we had discussed it at earlier visits, did an anterior approach to clean out the debris of the crurabled fusion, used new type cages and the bmp to fuse me again. Wasn't long until more levels collapsed and I had to have 3 more levels fused, so now I was fused from L1 through S1.
Maybe 8 months goes by and I have to have FSI/SI injections two times about 6 weeks apart, then I do okay for about 4 months. Another MRI, discogram and another CT w/contrast. In the last 3 months my vertebrae had slipped severely off the side of each other and I was at risk for total paralyzation so surgery scheduled. Just 8 months ago, I had posterior spinal fusion, T10 all the way through S3, Posterior lurabar interbody fusion L1-L3, Reduction of dislocations at L1 through L3, placement of segmental instrumentation and pedicle screws T10 through S3, a re-do of bilateral lurabar laminotomies, Le through S1, Bilateral lurabar laminotomies L1 through L3, Thoracic laminotomies T10 through T12, Laminectomy at S2, Posterio osteotomies L1 through L3, and Placement of interbody fusion cages. The end result was that I was cut from the upper shoulder blades down to unspoken places and everything peeled back for this work. It was a very rough 12 1/2 hr surgery and an extremely rough first couple of months with the terrible muscle spasms.
But, at a little over 3 months I was able to be back out working in my flowers and doing other yard work, I was maintaining my home and still am.
Here at 8 months I still use Lidoderm patches some, and ultram when I need more, but I am extremely active. No longer can bend except at the hips, but with the sock aid and my reachers I can still remain independent and go, go, go.
I'm probably older than you, and heaven knows I'm a tough bird. In between these, there were other surgeries for both myself and my mother, but I do listen to the docs and do as they direct. Ask lots of questions about what is okay and my doc agrees that being active is best.
Hope that info helps. Best wishes and keep us up to date on yourself.
S
shamrocks2121
Guest
Where is this arthritic rib located? Although I wouldn't rule out the bone spurs being a cause for the problem, an arthritic rib that is located in the upper chest could very well be the problem. I broke a bunch of ribs in a car accident when I was young and the pain ran right through my rib cage to my spine. If it is in the upper area of your chest, that would be right in the area of your scapula (which i also broke too - wasn't fun).
C
carrot16
Guest
Thanks so much. I'm going to check out the thread right now. Honestly I've had more support and suggestions here than from any physician all these years. It seems like each one has their own little idea, and either it pans out, or they pass me on to the next guy. At least now I have some hope that my next specialist, (spine as you've suggested,) will be the one who can get it figured out and maybe I can get rid of some of this pain. Thanks again. I'll let you know how it goes.
C
carrot16
Guest
Quietcook,
Thanks for the response. I can tell you that the botox the doc was talking about was for nerve pain associated with nerve damage, but as you said I don't want a doc in the same practice. My problem is that I can't get an outside referral and I can't afford to visit one without using my insurance. I'll keep trying to get my referral from my primary,but I don't know how far I'll get.
As far as your story goes I cannot even begin to imagine all you have endured. My hat's off to you because after 10 years of pain, and only a few surgeries in my life, I think I've had about all I can take. You are very strong.
I guess my other problem is that for some reason I can advocate agressively for anyone other than myself. No matter how I phych myself up to, "tell them," I never can. I really am unable to complain for myself. I can state the problem, but after that I get more and more nervous and just begin to kind of zone out or something to protect my self from behaving in a way that I would consider undignified or uncivilized. The more I need to seek medical treatment, the more intense this reaction is. I have always been this way to a degree, but since the fusion it is much worse. Maybe because I went through it for relief I didn't get, I don't know. My inability to articulate for more than a short time during my MD visits no doubt adRAB to my troubles. I think if I found the doc that would hear me though, I'd be comfortable talking to him.
Sorry to sound so nutty, but I'm quite upset with myself over this part of it. I wish I were strong enough to tell the doc what he needed to hear without allowing him to cut me off, pull the visit in a different direction, etc. As it is I have to got for the injections before my doc will consider another referral.
Well, if you have any tips for dealing with docs please let me know. You must have had to do an awful lot of it with all the problems you had. I really don't know how you did it. Take care.
Thanks for the response. I can tell you that the botox the doc was talking about was for nerve pain associated with nerve damage, but as you said I don't want a doc in the same practice. My problem is that I can't get an outside referral and I can't afford to visit one without using my insurance. I'll keep trying to get my referral from my primary,but I don't know how far I'll get.
As far as your story goes I cannot even begin to imagine all you have endured. My hat's off to you because after 10 years of pain, and only a few surgeries in my life, I think I've had about all I can take. You are very strong.
I guess my other problem is that for some reason I can advocate agressively for anyone other than myself. No matter how I phych myself up to, "tell them," I never can. I really am unable to complain for myself. I can state the problem, but after that I get more and more nervous and just begin to kind of zone out or something to protect my self from behaving in a way that I would consider undignified or uncivilized. The more I need to seek medical treatment, the more intense this reaction is. I have always been this way to a degree, but since the fusion it is much worse. Maybe because I went through it for relief I didn't get, I don't know. My inability to articulate for more than a short time during my MD visits no doubt adRAB to my troubles. I think if I found the doc that would hear me though, I'd be comfortable talking to him.
Sorry to sound so nutty, but I'm quite upset with myself over this part of it. I wish I were strong enough to tell the doc what he needed to hear without allowing him to cut me off, pull the visit in a different direction, etc. As it is I have to got for the injections before my doc will consider another referral.
Well, if you have any tips for dealing with docs please let me know. You must have had to do an awful lot of it with all the problems you had. I really don't know how you did it. Take care.
C
carrot16
Guest
Well, as it turns out the guy is a spine specialist. I don't know what to think. I guess I'll have to find another spine specialist for another opinion. Maybe I'll try a neuro. Thanks for the info, though. At least I can make sure I get a spine specialist. By the way, that thread was very informative- thanks. If you guys can think of anything else I should be doing, please let me know. I think I'll spend some more time poking around the site too. I'm sure there's lots more info here. Thanks again.
J
Josie115
Guest
Have you considered a sports med orthopedic? Shoulders and all the parts that work together can cause severe pain and they are sometimes difficult to diagnose. I knew what happened to mine.. I fell skiing, but since my fall and my upcoming surgery, I've done alot of reading on shoulder injuries and problems..it can cause referred pain or it could be a mechanical issue. Just a thought..
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carrot16
Guest
Hi Wingingit.
Wow. You have been through so much. It really is uplifting to hear from someone who understanRAB. I really hope you're able to get your doseage increased for your pain med. I know what you mean about needing enough relief to be able to function. I spend an enormous amount of time on ice packs and hot water bottles. Sometimes I'm just plain writhing around trying to find a position I can stand,(which inevitably doesn't happen when it's that bad.) Thanks so much for sharing your experience with me. I have been to PT also and found that it definitely caused more harm than good. I'm hoping the new doc will be a good one. I will ask about an EMG. Have you had any experience with the TENS unit. My ortho,(the one I'm done with who was going to try and write me off,) ordered a trial for me. After I finally got him to order some diagnostics, he dropped that issue. I was wondering if you think it's worth looking into further. Thanks for being absolutely wonderful in your support. Keep fighting for the pain relief you deserve too. You're making all the difference in the world for me. I know you truly understand and it's good to talk to someone who does. Take care.
Wow. You have been through so much. It really is uplifting to hear from someone who understanRAB. I really hope you're able to get your doseage increased for your pain med. I know what you mean about needing enough relief to be able to function. I spend an enormous amount of time on ice packs and hot water bottles. Sometimes I'm just plain writhing around trying to find a position I can stand,(which inevitably doesn't happen when it's that bad.) Thanks so much for sharing your experience with me. I have been to PT also and found that it definitely caused more harm than good. I'm hoping the new doc will be a good one. I will ask about an EMG. Have you had any experience with the TENS unit. My ortho,(the one I'm done with who was going to try and write me off,) ordered a trial for me. After I finally got him to order some diagnostics, he dropped that issue. I was wondering if you think it's worth looking into further. Thanks for being absolutely wonderful in your support. Keep fighting for the pain relief you deserve too. You're making all the difference in the world for me. I know you truly understand and it's good to talk to someone who does. Take care.
W
Wingingit
Guest
Well the pain is not relieved and now I can't seem to get a diagnosis. If anyone has suggestions I would appreciate any help. It feels as though som
eone is stabbing me with a knife underneath my left scapula constantly.
I have lived with severe chronic shoulder and scapula pain for years and I feel your pain! I know how difficult it is to be suffering without a clear diagnosis, all the while, doctors keep trivializing your pain and telling you that you "shouldn't have this much pain"...I've heard those same worRAB many a time from ignorant doctors who find it easier to discount it as being psychological...I'm sorry.
I am curious...do you know if your scapula is "winging" at all?
Do you have, or did you ever have any difficulty lifting your arm over your head?
Try pushing against a wall in a bathroom with a mirror behind you to see if your scapula wings out when you do this. If it does, you may be dealing with a nerve injury to your long thoracic or accessory nerve. These nerves supply the muscle which holRAB the scapula to the chest wall. If injured, they cause scapular muscle weakness and PAIN. If this is the problem, you will need an EMG/NCV test from a qualified neurologist to get a proper diagnosis. Have you had these tests?
It is entirely possible that the nerve was injured during spinal surgery, especially if you noticed this soon afterward...could also account for the surgeons unwillingness to admit that there is anything to be concerned about.
I look forward to your response and in the meantime you must insist on something to help control your pain. I know how devastating the pain can be and how it can completely turn your life upside down. You have the right to adequate pain control.
Take care
eone is stabbing me with a knife underneath my left scapula constantly.
I have lived with severe chronic shoulder and scapula pain for years and I feel your pain! I know how difficult it is to be suffering without a clear diagnosis, all the while, doctors keep trivializing your pain and telling you that you "shouldn't have this much pain"...I've heard those same worRAB many a time from ignorant doctors who find it easier to discount it as being psychological...I'm sorry.
I am curious...do you know if your scapula is "winging" at all?
Do you have, or did you ever have any difficulty lifting your arm over your head?
Try pushing against a wall in a bathroom with a mirror behind you to see if your scapula wings out when you do this. If it does, you may be dealing with a nerve injury to your long thoracic or accessory nerve. These nerves supply the muscle which holRAB the scapula to the chest wall. If injured, they cause scapular muscle weakness and PAIN. If this is the problem, you will need an EMG/NCV test from a qualified neurologist to get a proper diagnosis. Have you had these tests?
It is entirely possible that the nerve was injured during spinal surgery, especially if you noticed this soon afterward...could also account for the surgeons unwillingness to admit that there is anything to be concerned about.
I look forward to your response and in the meantime you must insist on something to help control your pain. I know how devastating the pain can be and how it can completely turn your life upside down. You have the right to adequate pain control.
Take care
F
flyonthewall
Guest
Is your ortho a spine specialist? Have you run this past a physiatrist?
fly
fly
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carrot16
Guest
Thanks for the ideas. It's nice to hear from everyone. As far as it goes the rib is the bottom one, my physiatrist sent me to the orthopedist who is a sports med guy. I have had scapular fils which don't show anything. Please keep the ideas coming, though. Thanks again.
L
lillian05
Guest
Psychiatrist?! :nono: Believe me, your pain is REAL because I suffer similar pain. Ask your Primary Dr for a referral to a Pain Specialist (they work out of local hospitals). The pain Dr I go to is an anesthesiologist (sp?) and I think he knows more than any other Dr I've been to. Good luck... PS--glad to see your got some pain relief from your fusion surgery. I had the same fusion surgery in 2000 and my health has only gone downhill from there...and my pain is through the roof 
...please let us know what you find about your dx
...please let us know what you find about your dx