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  • shrinking fast

    I have been having problems with the discs and bone deterating above my fusion. It started with T-12 and worked its way up. I recently found out that it has continued into my neck. I was told they would not operate in my chest area to replace the discs, that the spine would fuse on its own. My question is will the bone deteration stop or will arthritis keep eating my spine? I'm 51 and was told I have the spine of an 85 year old. I'm just wondering what my spine will be like when I'm 70.
    T12- L5 fusion 1975 - Rochester, NY
    2002 removal of bottom of rod and extra fusion
    3/1/11 C5-C6 disc replacement
    Daughter - T7 - L3 fusion 2004

  • #2
    I am so sorry this is happening to you. Have you been to see a Rheumatologist or a metabolic specialist? Do you take Fosoamax or any of the bone building medications? There has to be someone out there who can help you. I am pretty sure that when bone fuse, arthritis can no longer do its damage since bones need to rub together to damage themselves. I hope you can get the help you need.
    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


    • #3
      Now that I see dozens of xrays every week, I've become very aware of what degeneration looks like. I see 50 year olds with spines that look like someone in their 70s or 80s, and I see 70 and 80 year olds with spine that are like those of a kid. The range is shocking.

      I agree with Sally that it might be good to pursue this with someone.

      --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


      • #4
        i am in favor of medication to stop bone loss...but there are side effects...that some doctors are paying more attention to lately!! i was on Fosamax (have osteopenia) or the other one that came before it...name escapes me now...had to go off for dental implants...the side effects can include damage to the jaw...and other dental structures....amongst other side effects...

        i am NOT saying i think that people should not take the meds...just suggesting to be aware of the warnings...as with all meds!

        note...i am also on bio-identical hormones now...including natural estradial...(at least, the specialists and special compounding pharmacies claim it is "natural")...i personally don't think help from those hormones compare to the bone density help one gets from meds like Fosamax, but that is just my opinion, not a fact...

        jess

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        • #5
          Jess, I have checked with my dental hygienist and dentist more than once and they tell me that it is extremely rare to have jaw problems because of bone building medications except in people who have extensive major dental work, and they would tell me if I was having a problem. Did you mention once that your were having major dental problems, or am I thinking of someone else?
          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


          • #6
            hi Sally
            yes..major...involves teeth extraction, sinus lifts (one each side...dont ask!!), bone grafting, dental implants... will probably cover the next 2 years...it is slow going, due to healing time in between procedures! (been a year already, need 2 more!)

            ALL dentists told me to stop the bone medication...so i did...also, 2 primary care doctors told me it wasnt that important for me to take the stuff, even with my osteopenia, but they were glad i was getting some estrogen....it supposedly helps the bones....never mind the side effects from hormones! hopefully, bio-identical compounded ones are safer...who knows....guess time will tell...

            i hope you are enjoying Carolina...and their weather!!!

            jess
            Last edited by jrnyc; 09-30-2010, 08:05 PM.

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            • #7
              Jess sometimes when you already have scoliosis your teeth is all ready like that
              Kara
              25
              Brace 4-15-05-5-25-06
              Posterior Spinal Fusion 3-10-10
              T4-L2
              Before 50T
              After 20T

              Comment


              • #8
                hi Kennedy
                i am not sure i understand what you meant....that teeth are related to the scoliosis? i do not see the connection, unless you are referring to gum problems being connected to teeth problems caused by bone loss in the mouth and jaw...??

                i am missing what you meant....?

                jess

                Comment


                • #9
                  I believe that bone-building drugs are only recommended for people with osteoporosis, not arthritis, not osteopenia. Rainbow, I worry about this too since I developed severe arthritis just below my fusion over 15 years ago. I have now lost 2" of height above my fusion, due to arthitis and a worsening of my curve. But I'm not usually in pain, so I just try to keep living my life, try not to worry so much, stay as active as possible.
                  Last edited by JulieBW; 10-02-2010, 08:36 AM.
                  1966 fusion in Buffalo of 11 thoracic vertebrae, with Harrington rod

                  Comment


                  • #10
                    Originally posted by jrnyc View Post
                    hi Kennedy
                    i am not sure i understand what you meant....that teeth are related to the scoliosis? i do not see the connection, unless you are referring to gum problems being connected to teeth problems caused by bone loss in the mouth and jaw...??

                    i am missing what you meant....?

                    jess
                    I think she might be talking about syndromic scoliosis. Marfans scoliosis can be accompanied by tooth crowding for example.

                    But generally, because syndromic scoliosis is only a small percentage of all scoliosis cases as far as I know, any teeth issues present with scoliosis are just coincidence and not connected.
                    Sharon, mother of identical twin girls with scoliosis

                    No island of sanity.

                    Question: What do you call alternative medicine that works?
                    Answer: Medicine


                    "We are all African."

                    Comment


                    • #11
                      I have read that with some kinds of Ehler Danlos Syndrome (another genetic issue, in some ways similar to Marfan's ), dental issues are frequent. I certainly have spent far more on my teeth in my lifetime than I expect to spend on my spine, even after surgery - but then, I haven't had dental insurance for quite some time.
                      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


                      • #12
                        hi Julie
                        no, osteopenia patients are often told to take Fosamax, etc, to try to prevent further deterioration of bones...
                        i was on the stuff for at least 2 years when i started getting dental implants...had to be off it at least 3 months before dental specialists would start the bone grafting...

                        i've lost 2 inches in height, and am in severe pain...but i still haven't decided...or have decided 20 times or so about the surgery....

                        jess

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                        • #13
                          jess i have a pic the show what i ment
                          Kara
                          25
                          Brace 4-15-05-5-25-06
                          Posterior Spinal Fusion 3-10-10
                          T4-L2
                          Before 50T
                          After 20T

                          Comment


                          • #14
                            Originally posted by loves to skate View Post
                            Jess, I have checked with my dental hygienist and dentist more than once and they tell me that it is extremely rare to have jaw problems because of bone building medications except in people who have extensive major dental work, and they would tell me if I was having a problem.
                            I've been told the same. That and the number of years (many) one is on the meds. Top maxillofacial surgeon - DDS and MD.
                            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


                            • #15
                              Originally posted by loves to skate View Post
                              Jess, I have checked with my dental hygienist and dentist more than once and they tell me that it is extremely rare to have jaw problems because of bone building medications except in people who have extensive major dental work, and they would tell me if I was having a problem.
                              I've been told the same. That and the number of years (many) one is on the meds. It's still good to remember these meds are not risk-free, by any means. FWIW Dr. Mercola's latest bugaboo is bisphosphonates (says they cause cancer, but OTOH he seems to finger a new substance daily).

                              My personal referent is a top maxillofacial surgeon - DDS and MD.
                              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

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