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  • Revision surgery and broken rod removal

    I am 55 and had two scoliosis surgeries. My first was in 1967 to correct a 90 plus degree right thoracic curve, fused from T3 - L 2. I had a Harrington rod implanted and I was corrected to 55 degrees. The rod broke in 1970 and was replaced, but that rod broke in 1980. I still live with the second broken rod. The top part of the rod can be felt through my skin.

    My back has deteriorated over the past 10 years due to trauma from a fall and an accident. I have lost height (1 1/4 inches). My curve today measures 68 degrees and I have herniated disks in my neck. Last year I had horrible pain between my shoulder blades, and down my right shoulder and arm and I was in a wheelchair. X-rays showed the herniated neck disks and I went back for physical therapy for the neck injury. I have no pain now but I can't relax my right shoulder (it's higher) and I feel my rib hump all the time. I have trouble lifting and doing some chores.

    I have major breathing problems and lung restriction, and neurological issues. My back is collapsed on the left side and I have a large rib hump on the right and my hip is out more. At one point I did very well with my physical therapy. Now every time I exercise it is followed by a setback.

    I've had to adjust to major lifestyle changes (piano teaching/singing) that I used to do easily and I am extremely depressed. My left hand has tremors in it and I lose control when playing piano so I had to give it up. My breathing problems make singing impossible. I am seeing a neurologist in October for my hand/arm issues, which I believe are a direct result of the weakness on that side of my back.

    I have been told by more than one scoliosis surgeon that there are risks involved with removing an old rod with revision surgery, especially because my problem is not pain and because I am mobile they don't want to do it. I have read that other forum members have had rods replaced with revision surgery and am confused why there should be a risk of paralysis from going in and removing an old Harrington rod. Whatever gains I've made with physical therapy just aren't there anymore and I'm not confident it will be a permanent solution this time. If anyone has any suggestions or anything that can help me I'd appreciate it.

  • #2
    My surgery was near the time of your first, there aren't many of us posting here with rods that old. My fusion is about the same as yours, T3 to L2. I've got some neurological symptoms which interfere with walking. I saw a neurologist recently, and received an epidural cortisone injection. That seems to help many people temporarily, but didn't do anything to reduce my symptoms. I use a hiking pole to enable me to walk better. Movement of all kinds makes me feel better, especially swimming and biking: I biked for two hours today, and do that many days when I don't have to go to work. I didn't think removal of a broken rod would be that big a deal, but others here will probably be more helpful with that question.
    1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

    Comment


    • #3
      Originally posted by OceanWave View Post
      I am 55 and had two scoliosis surgeries. My first was in 1967 to correct a 90 plus degree right thoracic curve, fused from T3 - L 2. I have herniated disks in my neck. Last year I had horrible pain between my shoulder blades, and down my right shoulder and arm and I was in a wheelchair. X-rays showed the herniated neck disks and I went back for physical therapy for the neck injury. I have no pain now but I can't relax my right shoulder (it's higher) and I feel my rib hump all the time. I have trouble lifting and doing some chores.

      ...I've had to adjust to major lifestyle changes (piano teaching/singing) that I used to do easily and I am extremely depressed. My left hand has tremors in it and I lose control when playing piano so I had to give it up. ...
      Dear OCeanWave

      So sorry to hear about your problems especially that you've had to give up your creative activities which gave so much joy and meaning to your life. We can stand a lot of pain as long as we have such outlets. To lose singing AND piano - what a sorrow!

      I have nothing to contribute (besides sympathy) except to ask if you have made super sure your neck issues have been checked out in their possible relationship to your hand coordination. I had severe cervical spinal stenosis which affected my fine motor coordination considerably - a catastrophe for me as a graphic artist-sculptor. It would be lovely if it turned out a similar condition were affecting you and could be relieved!

      Best!

      Amanda
      Not all diagnosed (still having tests and consults) but so far:
      Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
      main curve L Cobb 60, compensating T curve ~ 30
      Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

      Comment


      • #4
        Originally posted by OceanWave View Post
        I am 55 and had two scoliosis surgeries. My first was in 1967 to correct a 90 plus degree right thoracic curve, fused from T3 - L 2. I had a Harrington rod implanted and I was corrected to 55 degrees. The rod broke in 1970 and was replaced, but that rod broke in 1980. I still live with the second broken rod. The top part of the rod can be felt through my skin.

        My back has deteriorated over the past 10 years due to trauma from a fall and an accident. I have lost height (1 1/4 inches). My curve today measures 68 degrees and I have herniated disks in my neck. Last year I had horrible pain between my shoulder blades, and down my right shoulder and arm and I was in a wheelchair. X-rays showed the herniated neck disks and I went back for physical therapy for the neck injury. I have no pain now but I can't relax my right shoulder (it's higher) and I feel my rib hump all the time. I have trouble lifting and doing some chores.

        I have major breathing problems and lung restriction, and neurological issues. My back is collapsed on the left side and I have a large rib hump on the right and my hip is out more. At one point I did very well with my physical therapy. Now every time I exercise it is followed by a setback.

        I've had to adjust to major lifestyle changes (piano teaching/singing) that I used to do easily and I am extremely depressed. My left hand has tremors in it and I lose control when playing piano so I had to give it up. My breathing problems make singing impossible. I am seeing a neurologist in October for my hand/arm issues, which I believe are a direct result of the weakness on that side of my back.

        I have been told by more than one scoliosis surgeon that there are risks involved with removing an old rod with revision surgery, especially because my problem is not pain and because I am mobile they don't want to do it. I have read that other forum members have had rods replaced with revision surgery and am confused why there should be a risk of paralysis from going in and removing an old Harrington rod. Whatever gains I've made with physical therapy just aren't there anymore and I'm not confident it will be a permanent solution this time. If anyone has any suggestions or anything that can help me I'd appreciate it.
        Hi Ocean...

        Everyone is different, so it's possible your case might potentially be more difficult than others. I can tell you that surgeons are not all created equally. You'll need to find someone who has a lot of experience in treating patients with prior scoliosis fusions. Where are you located?

        --Linda
        Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
        ---------------------------------------------------------------------------------------------------------------------------------------------------
        Surgery 2/10/93 A/P fusion T4-L3
        Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

        Comment


        • #5
          I'm in New York City, and I've seen most of the top surgeons here including Dr. Boachie Dr. Lonner and Dr. Neuwirth. I will be starting physical therapy again soon.

          My right shoulder is extremely bad this weekend. Usually I feel better when I bike and walk, but this time I got worse. I am very accident prone and had a summer of mishaps. In July I slipped on a step in my house and landed on my upper back. Yesterday when looking at a sheet of bathroom tiles, the sheet fell forward on my arm. Today I have pain and my pectoral muscle in front is collapsed and looks wasted. I've been using heating pads and taking muscle relaxers. I can't do my exercises at all now and need a new protocol for physical therapy because my shoulder constantly goes out, even when I use the yellow Therabands (one year ago I did the red with no problem). Today when I opened my refrigerator door, I was using the strength of my back and hump to open the door, not my arm or shoulder. And my rib hump is really bothering me because of the prominence and increased rotation and it hurts. I don't mean to complain I just wish I had an answer and knew what to do because one year ago I was doing very well with my exercises. But now? I am hopeful that when I go to Rusk maybe they can help again; they are really very good over there. Does anyone have any advice for me? What about the Saunders device, does that help shoulder/neck problems?

          Comment


          • #6
            Hi OceanWave

            To reply to your skepticism about further surgery join the coud I am scheduled to go in on November 3rd for removal of broken rods which I can also see sticking out of my back and over left hip area at waist. If you live in Buffalo New York there is in New York City a hospital for special surgeries. If you need can get the name of it. I live in Tennessee originally from Long Island, New York. I did want to have the surgery there after reading on this forum a couple of comments "don't have your surgery on the south". Actually from what I have read Chicago is the best place, but due to insurance I will have to have mine here. Many doctors have ignored the problems I am having and just want to treat pain which I am having very little of. I have been to 2 neurosurgeons and basically the same surgery has been recommended. I too am terrified but have been told I would eventially have breathing problems without the surgery. There are two sides to everything and in the end it is our decision. The doctor I got from the list on this forum is extremely nice and I pray his hands are as good. Did you injure your spine somehow or is the rod failure just due to natural causes? I can really empathize with you as being in the almost same boat. This is only my second surgery and I swore if they didn't get it right it will not happen again, but that is now not when the pain gets unbearable because a lifetime of pain meds is not great either. In the end I have decided to have everyone pray over my surgery. He will do 2 surgeries 4 days apart remove the rods, place pedicle screws and then go back in and set hardware and infuse this morphic protein solution which replaces the old graft they used to do. I hope this is of help to you. Will keep in touch as soon as I can sit after surgery and let you know how it goes. Please let me know what you decide as everyone that has contacted me on this forum has been so helpful just by knowing I am not out there alone. May God Keep You in His Care, Lotta
            Last edited by Lotta51; 09-30-2010, 05:02 PM. Reason: poor spelling
            Surgery T3-Sacrum
            November 2010 Age 59
            Dr Brian O'Shaughnessy Nashville, TN

            Comment


            • #7
              Hi,

              I am in England but there is a women here who wrote her story in the readers digest ( a magazine that comes out monthly ).You can read a segment of that story on

              http://www.dailyecho.co.uk/news/2406181.tall_story/

              It sounds very similar to your situation.I have become friends with her on face book and she is doing very well and has no pain and is still straight.

              I know you wouldnt be able to come to England to see her surgeon but maybe you can show the article to the surgeons you are seeing and suggest a similar operation.

              Just because u r not in pain doesnt mean u shouldnt be operated on. I am the same as u in that I have a large curve post surgery. I am not restricted in any way but if like u my curve continue to progress I would have revision surgery as I know it would not stop. Surgeons here have told me they would operate but as they have told u aswell there r risks but I feel it would be worth it to be straight and get your life back.

              Comment


              • #8
                hi Ocean Wave
                i have seen all the NYC surgeons you mentioned....and know they are all excellent!

                are you saying that none of those 3 surgeons will operate...?
                i am surprised that Dr Boachie said "No", as he goes all over the world and has fixed all kinds of awful curves, especially for kids! is there no one in NY who can do a complicated revision surgery...?!

                i hope you can find a surgeon who believes he can fix things for you!!

                jess

                Comment


                • #9
                  Great article Felix. She went through so much. I love a happy ending.
                  Surgery March 3, 2009 at almost 58, now 63.
                  Dr. Askin, Brisbane, Australia
                  T4-Pelvis, Posterior only
                  Osteotomies and Laminectomies
                  Was 68 degrees, now 22 and pain free

                  Comment


                  • #10
                    The doctors cant find out whats going on any feedback would be great!

                    I am a young man, just turned 31 years old. About a year and a half ago, I started to develop a slight tremor in my left forearm/hand. Over time, the tremor has gotten more exaggerated. Just recently I have noticed that my left lower leg/foot has felt heavy and stiff and I cannot move or rotate my foot as well as my right one. I have jogged a couple of times recently and although, while running I was okay, afterwards, this caused lower back ankle/foot pain. When I stand or walk for an extended period of time, I have pain in my lower back and ankle/foot. Sometimes when turning my head quickly, I get a pinching type pain in my neck on both sides of my neck.

                    When I sleep, the tremor goes away. When I wake up with the sensation of pins-and-needles in my arm from sleeping on it, although it is numb, as it normally would be, I have complete use of my hand and fingers, normal dexterity, without the tremor, until normal feeling comes back, usually up to about 5 minutes. The more relaxed I am, it seems, the less the tremor. But the stiffness or lack of dexterity of my fingers stays the same. Also, a drink or two of alcohol suppresses the tremor.

                    As a twelve year old, I had scoliosis surgery, placing rods in my back, from “T-4 to the end plate of T-10 and T-11 through L-3’. Also, about 10 years ago, from a target shooting gun accident, I have a .22 caliber bullet fragments remaining in my upper left arm. At first, we thought the bullet fragments were the cause since only my lower left arm was affected but since the EMG shows normal nerve conductivity and now that my left leg seems to be affected we don’t think this is a factor..

                    I was told, when I had the scoliosis surgery that possibly, down the road, I could experience problems from my neck. Currently, as stated earlier, I get some neck pain and stiffness and lower back pain. Earlier, in the summer, after doing some strenuous yard work, I had acute lower back pain that lasted for several weeks. I took Skelaxin, a muscle relaxer, which helped. This is the first time I have ever had that extensive pain in my back.

                    We have been to several different neurologists, without much success. I have had a brain MRI done, a neck MRI, 2 different EMG’s, extensive blood work and an EEG done as well. All reports are included. You will see that the Brain MRI shows normal. The EMG shows that the nerves and muscles of my lower arm are normal. The blood work and EEG are normal as well. The Neck MRI is, we believe now is the area of focus, as the report says that I have “significant reversal of the cervical lordosis and a moderate to large, right sided disc herniation at C6-C7, (there are three herniated discs c4-c5, c5-c6) The neck problems seems to have been overlooked to date by doctors as originally, the diagnosis was that I had an anxiety related tremor because when I concentrated on something else, the tremor went away, briefly. Also, there was some concern from just one of the doctors that it may be Parkinson’s disease. However, most of the doctors felt that the frequency of the tremor, 10 Hz doesn’t suggest it. Also, in trying Cararbidopa-levodopa, 25-100MG tablet, which should have stopped the tremor, if it was Parkinson’s, did nothing but made me nauseous. It had no affect on the tremor.

                    Speaking of medicines, to date, I have been prescribed the following medications with literally no results. Starting from earliest date to most recent…
                    Trihexyphenidyl – 2MG, taken twice daily – (this made me dizzy, headachy,weak.)
                    Pramipexole Dihydrochloride, (Mirapex) - .5MG, taken 1 tab, 3 times daily – (this caused
                    diarrhea)
                    Lorazepam - .5MG, taken one tab, twice daily. (this lessened the tremor slightly for just
                    a day or two but it kept me awake).
                    Carbidopa-Levodopa – 25-100MG, taken 1 tab, three times daily, (Made me very
                    Nauseous, with no affect).
                    Clonazepam - .5MG tab, taken 1 tab, twice daily. (no affect)
                    Amantadine – 100MG, taken 1 tab twice daily. (Lessened tremor for just a day or tow but
                    then made me nauseous, headachy).
                    Propranolol – 20MB tabs, taken 1 tab daily. Since there was no affect, this was
                    Increased to 3 tabs, 3 times daily. (No affect at either dosage).
                    Prednizone – Tried a metered dose pack to see if it would reduce inflammation hoping
                    to reduce the tremor some. (There was no significant affect).

                    I am currently not taking any medications other than occasional Advil for pain in my lower back and neck stiffness. Additionally, I tried acupuncture for 8 appointments. While on the table, relaxing, the tremor went away, then, after getting up, the tremor came back.

                    Comment


                    • #11
                      John,
                      Welcome to the forum. I am so sorry for your troubles. It sounds to me like you should find yourself a really good adult scoliosis revision surgeon. Go to the Scoliosis Research Society and click on search for a physician in your area. If you would start your own thread and name the physicians you have found in your area, you will probably get some feedback from other members on this forum.
                      Sally
                      Diagnosed with severe lumbar scoliosis at age 65.
                      Posterior Fusion L2-S1 on 12/4/2007. age 67
                      Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
                      Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
                      New England Baptist Hospital, Boston, MA
                      Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

                      "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

                      Comment


                      • #12
                        feedback cont

                        we have been to a back surgeon at jefferson they said scoliosis wouldn't cause it so we have an appointment to see a neurosurgeon/scoliosis specialist at johns hopkins next month? but I think it has something to do with his back/neck?

                        Comment


                        • #13
                          hi John
                          i agree with all the suggestions...that you find a TOP scoliosis specialist, who can perhaps figure out, by seeing new X rays, MRI's, etc, what is going on with your spine and your neck...please, try to find an SRS surgeon on the list here of top people in the field! what popped into my head, as a non medical person, was Parkinsons, but if a good neurologist has ruled it out...?..i guess it wouldn't be that...i suppose lay people just think of that disease when they hear "tremors"...
                          i know spinal problems can cause nerve related issues...so i think the place to start your search is with a top scoli specialist..then move on from there, if need be...
                          what a shame you were prescribed so very many medications, without any one of them helping you!

                          i hope you find the answers you need!

                          i agree with Sally that it might be best to start your own thread...for specific feed back...

                          jess
                          Last edited by jrnyc; 10-31-2010, 11:12 PM.

                          Comment


                          • #14
                            Two surgeries, a flat back and a bum hip

                            Hi Ocean Wave and Lotta 51 and everybody out there in revision surgery land!
                            I never even heard of scoliosis until early 2006, when the backaches I was having while working on an assembly line prompted me to see a doctor. I had a bit of a curve that for some unknown reason just wouldn't quit curving. Rapidly. In less than a year, it went from a little over 40 degrees to over sixty. I had the first surgery because my scoliosis was progressing so quickly and so unexplainably that I could honestly feel myself curling up and was afraid of what my future would be if the curving weren't somehow halted. My spine surgeon at Vanderbilt implanted four rods in late 2006, one on either side of my spine from midshoulder level down to my sacrum, and one going from lower spine to pelvis on either side, horizontally. By 2007, after returning to work full time, one of the horizontal rods broke, so in September of the same year, the surgeon did an anterior fusion using those little metal cage thingies for my lower four vertebrae. A year of so later, I began having problems with my leg on the side where the broken rod is. The surgeon said he wouldn't remove the rod, and couldn't do anything more for my back, but that there was a surgery he could do that'd help my leg. I didn't go back. Now my hip on that side hurts a lot. I have flat back syndrome and lean forward to walk, which's exhausting. I'm afraid to even consider another surgery, though at times the pain's so severe I swear I'd let them cut my leg off if they could get it to stop for just a little while. I take narcotic pain medicine and NSAIDS and rub arthritis cream over the area, and still I have to use a cane and have turned into a first class grouch. I wonder how many people I've had to apologize to who did nothing wrong except to catch me when my pain level was high? I ought to wear a warning label!

                            Comment


                            • #15
                              Hi Samuraitabbycat...

                              You need to find someone who specializes in revision surgeries. Where are you located?

                              --Linda
                              Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                              ---------------------------------------------------------------------------------------------------------------------------------------------------
                              Surgery 2/10/93 A/P fusion T4-L3
                              Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                              Comment

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