M
michelew66
Guest
I agree with your doctor in regarRAB to removing the roRAB because of the possibility of getting in an accident later on, as it happened to me. Back in June 2005 someone in a truck hit my car from behind. At first I didn't realize there was anything wrong, as I was more concerned about my daughters that were in the car with me. Then when the shock wore off, I realized I was in alot of pain. Because my previous spine surgeon would not look at my xrays to see if there was a problem going on (because he did severe damage to me prior) I had to search out another doctor. Finally I found one and the tests showed the top of my roRAB and hooks (around T5) were shoved into my spinal cord (spinal cord damage/myelopathy). By then I was losing feeling in my lower torso and leg, bladder incontinence, severe pain in spine, etc. I was told the roRAB needed to be removed or I would be paralyzed. Because the surgery was not performed until Nov 2005, my damage was permanent, in fact it got worse. Had I not had the hardware left, I would not have these problems. My previous doctor had refused to remove them. This was my 3rd set. Now I do not have any of the roRAB/hooks/screws, etc, except for 8 titanium mesh cages in my lurabar spine. The curve getting worse is/was the least of my worries, because of a corabination of my previous surgeries and the spinal cord damage, I have worse issues to deal with, including now needing surgery in my cervical spine (severe stenosis) because of damage done from a previous surgery that left me deformed and my lurabar spine has a severe stenosis because of all the prior surgeries and damage from those surgeries, including where the cages are still located. I am now told once more that I will need more surgeries or I will be paralyzed. I have been dealing with these problems now for 28 yrs. Whether hardware is removed or not, once we have had these surgeries, we will always have problems and need more surgeries. I have met SEVERAL people over the years that have left their hardware and have the same problems of unfused areas now needing to be fused. In fact more people have more problems by leaving them in. All the stress is now being put on the remaining levels, whether removed or not. Not only that, but the roRAB serve NO purpose after 1-2 yrs anyways.
Back in 1981 (I was 15) when I had my first surgery (minor thoracolurabar curve) the hardware was left in. My pain intensified over the years as I got older and having children. In 1990 I had to have a second surgery because my roRAB broke (was told they could never broke unless I jumped out of a high-rise building) and caused a severe kyphosis and lurabar flatback syndrome and tilting & rotation of the spine. A second surgery was never done correctly, which lead to more problems; including extension and more hardware. I suffered more crippling effects from the second surgery, which required a 3rd surgery 10 mths after. I hunted around for 5 yrs for someone else to do my surgery and help me, to no avail. Finally went back to my prior surgeon for a 3rd surgery. By then I had shrunk down from 5'9 to 5'2. Because of this bent over position for 5 yrs and other deformities and complications on other organs it caused, is the reason my neck neeRAB surgery today. I had my 3rd surgery in 1995 with new hardware and more extensions (14 hr 3-stage surgery). Then of course in 2005 I had the car accident with this instrumentation. Again, had I NOT had the hardware, I would not have had the spinal cord damage I have today. I have no feeling in my lower torso (inside or out), bowel & bladder incontinence/restriction, no feeling in back of both legs and losing more, nerve damage, severe spinal cord pressure, foot curl, etc. I also have the damage from having all these surgeries, making it so I need further surgery, as well as the third surgery was done while I was coming down with chicken pox. I got encephalitis while in surgery and almost died. I have brain damage from that, seizures, pressure and stiffness in head most all the time and cannot EVER have much-needed mylegrams. My *curve* never was corrected, nor did I ever need the first surgery as myself and my family were originally told. I was told had I NOT had my first surgery, I would be crippled over, which was far from the truth. I have had to deal with THIS crap for 28 yrs. I would have much rather have dealt with the problems of NOT having surgery and deal with it later in life, than what I have been dealing with all my life and am told I will have to for the rest of my life (I am now 42). I am told I need to start thinking about moving closer to a university hospital to spend my remaining years. This is NOT what I had envisioned for my life and being disabled. These surgeries are a joke! We are nothing but guinea pigs to practice on and push ortho surgeons stock investments in the pharmaceutical companies for the instrumentation they put in us. I know this from my previous surgeon and MANY years of research. Unfortunately most of these surgeries do not have great outcomes and most require revision surgeries.
Whether or not you leave hardware in or have it taken out, if you have a long fusion, you will have problems with the remaining levels in most cases. There's too much stress in general put on the remaining areas. As far as removing the roRAB, it was far easier from my point of view. I was in the hospital for a week, because of the cord damage and I had a hernia surgery at the same time. I was supposed to be out of work for 6-8 wks, but went back after 2 wks because being a single mom, I needed the income. Now once again I'm disabled. If nothing else for me, since the roRAB were removed I no longer have the pain of the roRAB pressing on the back of a chair and the shock of them being hit, now it's just the overgrowth that hits.
I wish you all the best,
Michele
1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolurabar curve.
1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum.
1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery)
2005-Car accident-spinal cord injury/myelopathy from top of roRAB/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent damage.
2008-5th surgery pending for severe stenosis in cervical spine, as well as lurabar spine because of prior surgeries.
Back in 1981 (I was 15) when I had my first surgery (minor thoracolurabar curve) the hardware was left in. My pain intensified over the years as I got older and having children. In 1990 I had to have a second surgery because my roRAB broke (was told they could never broke unless I jumped out of a high-rise building) and caused a severe kyphosis and lurabar flatback syndrome and tilting & rotation of the spine. A second surgery was never done correctly, which lead to more problems; including extension and more hardware. I suffered more crippling effects from the second surgery, which required a 3rd surgery 10 mths after. I hunted around for 5 yrs for someone else to do my surgery and help me, to no avail. Finally went back to my prior surgeon for a 3rd surgery. By then I had shrunk down from 5'9 to 5'2. Because of this bent over position for 5 yrs and other deformities and complications on other organs it caused, is the reason my neck neeRAB surgery today. I had my 3rd surgery in 1995 with new hardware and more extensions (14 hr 3-stage surgery). Then of course in 2005 I had the car accident with this instrumentation. Again, had I NOT had the hardware, I would not have had the spinal cord damage I have today. I have no feeling in my lower torso (inside or out), bowel & bladder incontinence/restriction, no feeling in back of both legs and losing more, nerve damage, severe spinal cord pressure, foot curl, etc. I also have the damage from having all these surgeries, making it so I need further surgery, as well as the third surgery was done while I was coming down with chicken pox. I got encephalitis while in surgery and almost died. I have brain damage from that, seizures, pressure and stiffness in head most all the time and cannot EVER have much-needed mylegrams. My *curve* never was corrected, nor did I ever need the first surgery as myself and my family were originally told. I was told had I NOT had my first surgery, I would be crippled over, which was far from the truth. I have had to deal with THIS crap for 28 yrs. I would have much rather have dealt with the problems of NOT having surgery and deal with it later in life, than what I have been dealing with all my life and am told I will have to for the rest of my life (I am now 42). I am told I need to start thinking about moving closer to a university hospital to spend my remaining years. This is NOT what I had envisioned for my life and being disabled. These surgeries are a joke! We are nothing but guinea pigs to practice on and push ortho surgeons stock investments in the pharmaceutical companies for the instrumentation they put in us. I know this from my previous surgeon and MANY years of research. Unfortunately most of these surgeries do not have great outcomes and most require revision surgeries.
Whether or not you leave hardware in or have it taken out, if you have a long fusion, you will have problems with the remaining levels in most cases. There's too much stress in general put on the remaining areas. As far as removing the roRAB, it was far easier from my point of view. I was in the hospital for a week, because of the cord damage and I had a hernia surgery at the same time. I was supposed to be out of work for 6-8 wks, but went back after 2 wks because being a single mom, I needed the income. Now once again I'm disabled. If nothing else for me, since the roRAB were removed I no longer have the pain of the roRAB pressing on the back of a chair and the shock of them being hit, now it's just the overgrowth that hits.
I wish you all the best,
Michele
1981-Harrington/Luque instrumentation T9-L5 for 30 degree thoracolurabar curve.
1990-Revision surgery-Broken hardware/flatback deformity/pseudoarthrosis-Cotrel Dubousett instrumentation with extension into sacrum.
1995-Revision surgery-Severe flatback deformity/kyphosis-Moss Miami instrumentation (T5-sacrum) with titanium cages (back/front/back procedure), thoracoplasty, total reconstruction with osteotomies. (surgeon did surgery while coming down with chicken pox and developed encephalitis with brain damage, etc during 14 hr surgery)
2005-Car accident-spinal cord injury/myelopathy from top of roRAB/hooks at T5. Surgery to remove hardware, with exception of cages. Permanent damage.
2008-5th surgery pending for severe stenosis in cervical spine, as well as lurabar spine because of prior surgeries.
