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Not good news --my bone drug's not working! I'm scared!!

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  • Not good news --my bone drug's not working! I'm scared!!

    Hi all,
    Four months ago I posted that I saw Dr. Perra of the Twin City spine center. Since then I have been taking a bone building drug called Forteo. He wants me to take this for osteoporosis so it will add bone and I can have a second revision surgery. I believe most of you know my story. If not, it explains it pretty good on my signarture below. I received this news in a letter, so I didn't get to ask any questions of him. Because of all the metal in my spine and left arm(from a break) and because I have excruciating nerve pain on my right buttock down my leg, they can only scan my right wrist. He wrote that my first reading of my radius was 0.440g/cm2, and this one, four months later, after the Forteo, is 0.433. But he did say the the latest one was done in a completly different manner than the first one, and could be why he got a reading of accually bone loss!! I was crushed!! I thought it would be better than that. He examined me this last time(two weeks ago) and I am bent over at a 45% angle, and I am in terrible pain. I can't see anything but the floor. A rod broke near the bottom of my back(L3/4 I believe.) And there's a screw and two or three bones pushing through my skin so tight that they're about to pop right through. (also low back). As you know I was fused from T4 to my pelvis.(twice) by the same surgeon.( Not Dr. Perra.) He wrote in the letter that if we do this now the risk for failure are too high and I could even end up paralyzed. The first two surgeons didn't do anything as far as strengthing my fusion in an anterior way. Dr. Perra plans on doing this in a two part surgery (front and back), if he does surgery at all! I'm so scared that I will be like this the rest of my life. I feel so for my family too. Should I go for another opinion? Am I being too quick to judge this surgeon? I feel in a way he just doesn't want to do me. I didn't think there would ever "not" be any hope. He wants me to be on the drug another three months and then test me again and evaluate the situation. The other surgeons didn't mention osteoporosis.
    One more thing. The other surgeons wouldn't go in the front of me cause of all the invasive stomach surgeries I have had. Dr. Perra will go in through the front if he does surgery, cause it's in such a low place in front. But why can't he do a TLIF<don't know about that abbrev.(reinforcment in front~~ from the back incision) if he knows how? His nurse told me he does them--but would prefer not to do one on me. Wouldn't it be better to do one on me? Oh my, I am so sad, because I can't live this way, and I am so scared about the way his letter sounded. Well, sorry this was so long. I am going to an endocronologist(as soon as I can) to see if he can put some insight on this , as it seems as though this drug(Forteo) made from "human parathyroid GLAND" isn't helping (yet anyway). All suggestions and advise would be so appreciated~~~ in this day and age, shouldn't there be something that someone can do? What about Lenke in St Louis? I'v heard he's great. I live in central So. Dak. Stay strong everyone~~I know that I am not alone in my mysery. I don't mean to be a big baby~~ Truley wishing you all the best~~Linda
    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
    This started adult onset scoliosis
    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
    May 30th 2013 revision
    May 8th cervicle surgery 2016
    May 31st Dr. Gupta revision 2017

  • #2
    Linda,
    I'm so sorry to hear your news. I don't know about Dr. Perra as a surgeon, other than he comes highly recommended from other surgeons from what I've heard. I have actually seen Dr. Perra about 14 years ago. His personality seemed a lot to be desired from my perspective, but in his defense, he was one of the most thorough Dr.'s I've ever seen. I would trust his opinion here. I'm not saying don't get a second opinion from another big name surgeon. You just don't wany ANY surgeon operating on you out of their own security zone. It's too much risk to you. I wish you all the best!

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

    Comment


    • #3
      Hi Linda...

      I'm so sorry about the crappy news. Hopefully, it's just a bad reading and you'll know a lot more in 3 months. I'm sure the waiting must be incredibly frustrating.

      There are all sorts of reasons why TLIFs can't (or at least, shouldn't) be done, so I would assume that Dr. Perra isn't arbitrarily not planning on doing TLIFs on you.

      Regards,
      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
        Linda--
        I'm so sorry this news was so bleak. Personally, I like your idea about Dr. Lenke. He sees the worst situations. He is very helpful and thorough and knows what he's doing. I was definitely glad he did mine. The downside is it's hard to get in but it might be worth a call since your situation is a tough one. Good luck. Janet
        Janet

        61 years old--57 for surgery

        Diagnosed in 1965 at age of 13--no brace
        Thoracic Curve: 96 degrees to 35 degrees
        Lumbar Curve: 63 degrees to 5 degrees
        Surgery with Dr. Lenke in St. Louis--March 30, 2009
        T-2 to Pelvis, and hopefully all posterior procedure.

        All was posterior along with 2 cages and 6 osteotomies.

        Comment


        • #5
          Originally posted by Doodles View Post
          Linda--
          I'm so sorry this news was so bleak. Personally, I like your idea about Dr. Lenke. He sees the worst situations. He is very helpful and thorough and knows what he's doing. I was definitely glad he did mine. The downside is it's hard to get in but it might be worth a call since your situation is a tough one. Good luck. Janet
          Janet, Did you have saggital imbalance and or flatback syndrome, where you lean forward? I guess I'm asking what your situation was when you went in for surgery? I think that since I have acually had three back surgeries(the first in 2006 was smaller) but that's the one that started the problems, "anyway", since i'v had so many, it is probably harder to put the screws and all that stuff back in. Just guessing~~~on top of osteoporosis. I was wondering how bad those readings are. My GP told me my first dex- scan, done here in my hometown, that Dr. Perra is comparing this with , wasn't bad at all. So I am confused. I will make some phone calls Monday. Thanks for the support. I have heard so much about Dr. Lenke. Best wishes to you-Linda
          Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
          Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
          This started adult onset scoliosis
          July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
          Oct.20th 2010, extended rods to T4 / did osteotomy at L3
          Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
          May 30th 2013 revision
          May 8th cervicle surgery 2016
          May 31st Dr. Gupta revision 2017

          Comment


          • #6
            endocrinologist?

            Hi Linda,

            I can only imagine how upsetting it must have been to receive the letter from Dr. Perra after 4 months of taking the medication (injections, right?). I have been following your posts and rooting for things to turn around for you!

            My surgeon was also Dr. Lenke. When I had my bone density test performed at Barnes-Jewish hospital, I remember reading that their "Bone and Mineral Health" center is one of the most highly rated in the nation. Please check out the link below about their department. Maybe getting a 2nd opinion with Dr. Lenke and also meeting with a doctor (endocrinologist) in their Bone Health Program would be helpful.

            http://www.barnesjewish.org/diabetes...ineral-disease

            All the best,
            Kathy
            Kathy
            46 yrs at surgery, now 50
            71 degree thoracolumbar curve corrected to 34 degrees
            8/2/2010 surgery with Dr. Lenke

            posterior T9 to sacrum with pelvic fixation

            4 osteotomies and 1 cage
            http://s1066.photobucket.com/albums/...athK_08022010/

            Comment


            • #7
              Originally posted by LindaRacine View Post
              Hi Linda...

              I'm so sorry about the crappy news. Hopefully, it's just a bad reading and you'll know a lot more in 3 months. I'm sure the waiting must be incredibly frustrating.

              There are all sorts of reasons why TLIFs can't (or at least, shouldn't) be done, so I would assume that Dr. Perra isn't arbitrarily not planning on doing TLIFs on you.

              Regards,
              Linda
              Hi Linda, Thanks so much for responding to my post. You always put things in perspective for me. I get so scared that this is it, and I will be bent over the rest of my life. And the pain makes it hard to think clear about this whole situation. I think I need to work on getting the screw out of my back thats pushing on a nerve and almost popping through my skin. Then go on and see what happens in three mo. I'm pretty scared right now. You have a point about the bone scan reading though. Something doesn't sound right. I'm going to have one done here the same way the first one was done. And see what the reading is. Thanks for the info on the TLIFS to. Sincerely, Linda
              Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
              Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
              This started adult onset scoliosis
              July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
              Oct.20th 2010, extended rods to T4 / did osteotomy at L3
              Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
              May 30th 2013 revision
              May 8th cervicle surgery 2016
              May 31st Dr. Gupta revision 2017

              Comment


              • #8
                Originally posted by rohrer01 View Post
                Linda,
                I'm so sorry to hear your news. I don't know about Dr. Perra as a surgeon, other than he comes highly recommended from other surgeons from what I've heard. I have actually seen Dr. Perra about 14 years ago. His personality seemed a lot to be desired from my perspective, but in his defense, he was one of the most thorough Dr.'s I've ever seen. I would trust his opinion here. I'm not saying don't get a second opinion from another big name surgeon. You just don't wany ANY surgeon operating on you out of their own security zone. It's too much risk to you. I wish you all the best!

                Rohrer01
                Hey, Thanks so much for the info. on Dr. Perra. That makes me feel much better that you've heard he's highly recommended. And I agree about his personality. He seems thorough. So maybe I need to be more patient on my end. Thanks again ~~Linda
                Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
                Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
                This started adult onset scoliosis
                July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
                Oct.20th 2010, extended rods to T4 / did osteotomy at L3
                Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
                May 30th 2013 revision
                May 8th cervicle surgery 2016
                May 31st Dr. Gupta revision 2017

                Comment


                • #9
                  Linda--
                  No, I didn't have sagital imbalance or flatback--just 2 pretty severe curves. See my signature info. But I know he does lots of revisions and takes the difficult cases so thought it might be one place to start. Janet
                  Janet

                  61 years old--57 for surgery

                  Diagnosed in 1965 at age of 13--no brace
                  Thoracic Curve: 96 degrees to 35 degrees
                  Lumbar Curve: 63 degrees to 5 degrees
                  Surgery with Dr. Lenke in St. Louis--March 30, 2009
                  T-2 to Pelvis, and hopefully all posterior procedure.

                  All was posterior along with 2 cages and 6 osteotomies.

                  Comment


                  • #10
                    I remember now~~~

                    Originally posted by Doodles View Post
                    Linda--
                    No, I didn't have sagital imbalance or flatback--just 2 pretty severe curves. See my signature info. But I know he does lots of revisions and takes the difficult cases so thought it might be one place to start. Janet
                    Janet, I remember now about the 6 oseotomies and the cages he put in you. That's a big surgery! I am trying to keep in mind that Dr. Perra wants to do all he can because of the two big surgeries I already went through. I have been throwing this around with my hubby to see about a second opinion with Lenke(providing I could get in). It would probably take a good six mo.(or more) But at least I would have one, if Perra falls through.(I see him again in 3 mo.) It's hard, because this isn't our first rodeo getting opinions. Well, you've been on here enough, you know the stories that have been told. When it comes to staying on our feet we have to get picky. Hope all is well~~Linda
                    Linda Brozik~~60 yrs. old at time of Lenke's first surgery. 62 now!
                    Surgery 2006 L3/4 L4/5 double fusion/ instumentation/ With 2 cages
                    This started adult onset scoliosis
                    July 1st, 2010/ surgery ~~fused T10 to pelvis (long rods/ screws)
                    Oct.20th 2010, extended rods to T4 / did osteotomy at L3
                    Oct. 29th 2012 Dr. Lenke St. Louis Mo. T4 to sacrum osteotomy anterior cage L3/4 titanium rods
                    May 30th 2013 revision
                    May 8th cervicle surgery 2016
                    May 31st Dr. Gupta revision 2017

                    Comment

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