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  • #16
    My husband really wants an RV, but for now, anyway, this conversation gets an eye roll from me. :-)

    Perhaps a little van someday, just big enough to sleep in. I, too am a little concerned about what will happen to my neck down the road after surgery as it seems like it would be vulnerable when everything else is fused. I have an appt Monday and he wants to go over all the extra studies that have just been done on my neck; side bending X-rays, and MRI. Also the DEXA I had done yesterday. The neurosurgeon, who was my firsts consult said my neck was OK for surgery, but of course I am concerned long term.

    I am really surprised there are not more on this forum talking about dystonia. A quick google search reveals a plethora of articles linking the two and even suggests that scoliosis is a form of dystonia.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899814/
    Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
    ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
    Fused T-7 to S-1 with pelvic fixation

    After 38* lumbar

    Xrays
    Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

    After: http://www.scoliosis.org/forum/attac...6&d=1424894360

    Comment


    • #17
      i think if you search for "rohrer" on this forum, you may
      see that she discusses it at length...her forum nickname is "rohrer"
      but since then, she received a new diagnosis...
      of Charcot Marie Tooth.

      jess

      Comment


      • #18
        There have been others who have written in the past on CMT, but I don't think that is what you are referring to. Here are three who started threads using CMT:

        http://www.scoliosis.org/forum/showt...tooth+syndrome

        http://www.scoliosis.org/forum/showt...tooth+syndrome

        http://www.scoliosis.org/forum/showt...tooth+syndrome

        Best wishes in your search.
        71 and plugging along... but having some problems
        2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
        5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
        Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

        Corrected to 15°
        CMT (type 2) DX in 2014, progressing
        10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

        Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

        Comment


        • #19
          i thought she started out asking for a discussion of
          dystonia...that is exactly what rohrer started out
          writing about...until she got the new diagnosis....

          this is one small part of a post by rohr from september 2014

          " The physiatrist talked about unkinking my neck. But he's for sure not big on surgery, either. But the dystonia is putting so much strain on the nerves, blood vessels and muscles there because of the altered anatomy. It's near the brachial plexus. If I weren't able to get relief from this, I don't know if I would eventually lose my arm because of the blood flow issue. .."

          jess
          Last edited by jrnyc; 10-30-2014, 07:58 PM.

          Comment


          • #20
            I stand corrected. I thought you were talking about the CMT. I apologize for not having searched further back and for misunderstanding. I, too, have been diagnosed with CMT so have that on my mind. I am sorry, Jess.
            71 and plugging along... but having some problems
            2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
            5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
            Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

            Corrected to 15°
            CMT (type 2) DX in 2014, progressing
            10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

            Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

            Comment


            • #21
              all is OK...just a simple mis-communication....

              wishing you a peaceful restful and warm
              wkend...gonna get colder in northeast...
              and changing the clocks...dark out earlier....brrrrr

              from jess...and Sparky

              Comment


              • #22
                Thanks-- and same to you, Jess. It's going to get much colder here in the midwest also. Brrrr. And we are at the exact line that edges the eastern/central zone (but are eastern) so it gets ridiculous here -- 5 minutes to central zone.
                71 and plugging along... but having some problems
                2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                Corrected to 15°
                CMT (type 2) DX in 2014, progressing
                10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                Comment


                • #23
                  Originally posted by Lizardacres View Post
                  My husband really wants an RV, but for now, anyway, this conversation gets an eye roll from me. :-)

                  Oh boy, Be careful on mentioning the word “RV” around your husband.....He just might come home with a Boeing Dreamliner 787. (smiley face)

                  I have always believed that scoliosis is caused by a nervous system disorder. Its neuro,....a motor control problem. At one of the scoliosis meetings years ago, I asked the wrong questions, didn’t word it right, and didn’t get the answer I wanted. I discounted it. This article explains a lot.

                  Of course many of the articles and studies are old, or older studies, this has been thought of by the experts for a long time now....

                  My nervous system was completely shot right before my surgeries. It felt like an electrical short circuit, sort of like a grounding out, and felt like my 12 volt battery only had 1 volt left.....I don’t know if any of the posters have felt or feel this way, but it’s the way I felt. Surgery helped some with this, but I still feel the fatigue. Brain abnormalities.....

                  Thanks for posting this Liz...I think you hit the nail right on the head.

                  Ed
                  49 yr old male, now 63, the new 64...
                  Pre surgery curves T70,L70
                  ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                  Dr Brett Menmuir St Marys Hospital Reno,Nevada

                  Bending and twisting pics after full fusion
                  http://www.scoliosis.org/forum/showt...on.&highlight=

                  My x-rays
                  http://www.scoliosis.org/forum/attac...2&d=1228779214

                  http://www.scoliosis.org/forum/attac...3&d=1228779258

                  Comment


                  • #24
                    Well, I am going to try this once more, to help bring up Rohrer's (and another) threads on dystonia... they start with the most current and go back to when she was first describing her problems. Liz, I don't know if they'll be of any help or not, but perhaps you can see that it has at least been written about here on the forum. The first thread -- please: there is no need to read the first part of as it has a lot of unnecessary squabbling in it.

                    http://www.scoliosis.org/forum/showt...light=distonia (starting around post #132 - I guess you'll have to go back one page, I goofed on where to start)

                    http://www.scoliosis.org/forum/showt...g+CDs+to+share

                    http://www.scoliosis.org/forum/showt...g+CDs+to+share

                    http://www.scoliosis.org/forum/showt...g+CDs+to+share

                    Ed, as always, thank you for gently getting us back on topic. (Blame an old lady for trying to be helpful but having her head in the wrong place!) Getting too old to help, I think!!!

                    Liz -- best wishes as you continue your journey and search for knowledge and help.

                    PS-- sorry for the highlighted yellow words in the threads, but that is what happens when you do a search...

                    I should have said #2-4 are by date with the most current listed first... those are Rohrer's
                    Last edited by Susie*Bee; 11-01-2014, 08:28 AM.
                    71 and plugging along... but having some problems
                    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
                    5/4/07 posterior fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
                    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

                    Corrected to 15°
                    CMT (type 2) DX in 2014, progressing
                    10/2018 x-rays - spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

                    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

                    Comment


                    • #25
                      Originally posted by titaniumed View Post
                      Oh boy, Be careful on mentioning the word “RV” around your husband.....He just might come home with a Boeing Dreamliner 787. (smiley face)

                      I have always believed that scoliosis is caused by a nervous system disorder. Its neuro,....a motor control problem. At one of the scoliosis meetings years ago, I asked the wrong questions, didn’t word it right, and didn’t get the answer I wanted. I discounted it. This article explains a lot.

                      Of course many of the articles and studies are old, or older studies, this has been thought of by the experts for a long time now....

                      My nervous system was completely shot right before my surgeries. It felt like an electrical short circuit, sort of like a grounding out, and felt like my 12 volt battery only had 1 volt left.....I don’t know if any of the posters have felt or feel this way, but it’s the way I felt. Surgery helped some with this, but I still feel the fatigue. Brain abnormalities.....

                      Thanks for posting this Liz...I think you hit the nail right on the head.

                      Ed
                      Ed,
                      I wonder if you can elaborate on the electrical short circuiting idea. I experience what I call buzzing where I feel a rapid twitch/ tremor take over in certain muscle groups for what can be an extended period (hours.) it is relatively painless but it does diminish the overall power of that muscle for a period of time. I also have a sense that some small stumbles (I'm really clumsy) can leave my electrical system short circuited. If I mention this to a family member they give me pretty funny looks so I keep it to myself now but I wonder if this is part of that collection of symptoms related to scoliosis.
                      I have not had surgery but have 62T and 71TL curves with progressing rotation and cervical kyphosis that gives me a pretty good view of the ground where I'm walking -so I shouldn't stumble as much as I do. Just curious...

                      Comment


                      • #26
                        Hi Gardener,

                        It sounds like you are having something called fasciculations, which are common and can be completely benign or a symptom of any number of neurological disorders. If you see a neurologist they can do nerve conduction studies and EMG and tell you which kind you have if you are concerned. My journey with my dystonia started with a neurologist and I was really lucky because he knew right away what was wrong with me, although he did do the tests I listed above. The nice thing about seeing a neurologist is that they schedule long appointments and spend a lot of time asking questions and listening. At least that was my experience. Probably has something to do with the kind of patients they see :-)

                        I would want to know what was causing this if it was getting worse or if I was having more new symptoms. After I was diagnosed with dystonia, it did progress for a few years, then plateaued (is that a word?). It hasn't gotten any worse for more than 10 years and I haven't had any new symptoms, but I do have periods where it is worse, even terrible, and periods where it's not that bad. And stress ALWAYS makes it worse, as does physical activity. Hope you get some answers.
                        Last edited by Lizardacres; 10-31-2014, 06:01 PM.
                        Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
                        ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
                        Fused T-7 to S-1 with pelvic fixation

                        After 38* lumbar

                        Xrays
                        Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

                        After: http://www.scoliosis.org/forum/attac...6&d=1424894360

                        Comment


                        • #27
                          Originally posted by titaniumed View Post
                          Oh boy, Be careful on mentioning the word “RV” around your husband.....He just might come home with a Boeing Dreamliner 787. (smiley face)

                          Ed
                          I thought maybe the Dreamliner was an RV, but it's really a Boeing airplane - you really lost me there. Once my husband took a one year old car to the dealer to get a dead battery replaced and came home with a new car - so I wouldn't be terribly surprised if he just went and bought an RV, he can be rather impulsive that way.

                          But actually, I had a question for you; somewhere in this forum I read that you spent $1000 in massages before your surgery. I get weekly massages and feel sad about having to give them up when I have surgery. It's my Friday lunch time treat (bribe to self) for making it through another work week. Did you ever go back to getting them? This question is for anybody, not just Ed. I know it wouldn't feel the same as my person bends me around as she does this and it feels so good. Not sure how it would be if you had residual numbness and metal in your back.
                          Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
                          ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
                          Fused T-7 to S-1 with pelvic fixation

                          After 38* lumbar

                          Xrays
                          Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

                          After: http://www.scoliosis.org/forum/attac...6&d=1424894360

                          Comment


                          • #28
                            My surgeon said no massages . This is even after years since my first surgery. I am unsure how it would feel but when I have had pt. They do it some and it feels good. But they know better about what to do that can help and not hurt.
                            T10-pelvis fusion 12/08
                            C5,6,7 fusion 9/10
                            T2--T10 fusion 2/11
                            C 4-5 fusion 11/14
                            Right scapulectomy 6/15
                            Right pectoralis major muscle transfer to scapula
                            To replace the action of Serratus Anterior muscle 3/16
                            Broken neck 9/28/2018
                            Emergency surgery posterior fusion C4- T3
                            Repeated 11/2018 because rods pulled apart added T2 fusion
                            Removal of partial right thoracic hardware 1/2020
                            Removal and replacement of C4-T10 hardware with C7 and T 1
                            Osteotomy

                            Comment


                            • #29
                              Suzie bee, That was nice of you to throw up Rohrer’s dystonia posts, I know she spent countless hours researching and trying to figure out what was happening to her.

                              Gardener, I agree with Liz. Fasciculation’s are classic for ALS patients which my father passed from. His symptoms were muscle twitching, and tripping. Michael J Fox mentioned that his left pinky finger was twitching back in the 80’s. Ozzy Osbourne was diagnosed with Parkins syndrome, not Parkinson’s disease. His story was very interesting because he saw all these experts who gave him multiple meds and he decided that it wasn’t working out, and finally found the right doctor and now he takes only one medication. I call this the Ozzfest doctor tour. Its nice to have a correct diagnosis right off the bat, but this usually takes time. It took 2 years for my fathers diagnosis, and from a known ALS expert.

                              Neuro science is extremely complicated....symptoms can match, but pinpointing isn’t as easy as it might seem. Self diagnosis is fruitless, you cant assume anything. Seeing a specialist is a start.

                              If you see a scoliosis specialist, mention the twitching and the tripping....these are things they need to know about. If they suspect something, they should either test themselves or divert to an associate. After all the EMG’s I’ve done, I have no clue what value they have had, I’m sure if I had anything, one of the specialists would have said something.

                              Liz, I used the dreamliner as an example of what not to do. Pilots begin in a Piper cub, they don’t start with a 747.....You want to start not necessarily smaller, but cheaper. These RV finance guys will finance anything....and owners can carry a note forever without any equity whatsoever. It can be a financial disaster and these guys don’t care.

                              On the massage question, I spent around $500/mo for around 6 years, or 36K. I loved my massages.......and found that they are better right after a hot soak. It has to be done immediately after you are completely boiled through.......I did most of mine at the famous Steamboat Hot Springs. If it was good enough for Mark Twain, its good enough for me. (chuckle, chuckle) I have probably spent over $100,000 maintaining my scoliosis through the years.

                              After my surgeries, I found that massage on my back felt strange over the hardware and that my old pains of scoliosis were gone. Massage is all about feeling better, and maintaining the pain, but I have little pain now. I guess it’s a sign of success, the acid test, when all of this comes to a halt. My massage therapist was devastated, I was a good customer..... Massage should be done gently on scolis, with no leverage moves.

                              After my surgeries, the tension release in my back was like a large weather balloon popping. I can relax now.....After my long 2 year recovery it was worth it.

                              The problem with successful scoliosis surgery is that you find out that everything else is shot. Of course I have to laugh about this now.

                              Ed
                              49 yr old male, now 63, the new 64...
                              Pre surgery curves T70,L70
                              ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
                              Dr Brett Menmuir St Marys Hospital Reno,Nevada

                              Bending and twisting pics after full fusion
                              http://www.scoliosis.org/forum/showt...on.&highlight=

                              My x-rays
                              http://www.scoliosis.org/forum/attac...2&d=1228779214

                              http://www.scoliosis.org/forum/attac...3&d=1228779258

                              Comment


                              • #30
                                Gardener,

                                I'm thinking you must like to garden- that is my big time hobby and how I spend my weekends, although it is increasingly difficult and painful. I've been spending the fall making it as self care as possible for my husband. No annuals now, just perennials as I prepare for surgery. Most everything has it's own drip line. Still have work to do this month though. What do you grow? Or I could be completely wrong, maybe it is your name!

                                Back to neurologists, if you decide to see one, before you make an appt, ask about what their specialty is. Some are generalists, the one I saw had been around forever and specialized in electro-physiological testing and just general diagnosis, but some specialize in epilepsy, or MS, or movement disorders which is mostly Parkinson's but includes dystonia.
                                Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
                                ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
                                Fused T-7 to S-1 with pelvic fixation

                                After 38* lumbar

                                Xrays
                                Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

                                After: http://www.scoliosis.org/forum/attac...6&d=1424894360

                                Comment

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