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Info requested for a relative who had a "bad news" dr appt yesterday

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  • Info requested for a relative who had a "bad news" dr appt yesterday

    My sister-in-law's aunt has suffered w/back pain for several years. I don't know all of the specifics, but the general story is this: Roughly a decade or so ago, she had a spinal fusion because her spine was collapsing. There were some levels of non-union, so she had a revision surgery.
    I met her last year (when my brother married his wife, not only did I acquire a wonderful new sister, but I got some great new family members in the deal, too!). . .at that time, she already needed a walker or a cane to ambulate (and with difficulty). She is in her late 60's, maybe 70 years old. She needs narcotics daily to control her constant pain.
    Yesterday, she had an appt with her surgeon, the same one who did her spine surgeries. She expected to hear that another disc was bad, and would need surgery. INSTEAD, he told her that she has 2 curves - one going one way, the other going the other way, and the verts in the middle are disintegrating. This, from the impression I got from my s-i-l, was the first time that the presence of any curves was mentioned to her. I did notice, when I saw her last week, a little kyphosis. He said she needed surgery, and that it was more specialized than what he could do, and that without surgery, she'd wind up in a wheelchair. He gave her a name of another surgeon. They live in the Chicago area.

    It sounded like the dr was saying that she now has scoliosis, so I came here and started searching, and found info on degenerative scoliosis.

    I am concerned about her having such a big surgery. It was no walk in the park for me to have these surgeries at 48 and 49. I know that several here are closer to her age, and have done well. She is diabetic, however (she takes insulin shots), which we all know makes healing more of a problem. I do question if the surgeon was correct in his prediction that she would be wheelchair-bound if she chose to not have surgery. . .I don't know if an surgeon who doesn't have experience with more complex cases has the knowledge to make that prediction.

    This has come as quite an upleasant surprise to the family. Any opinions or experiences that some of you may have had would be really helpful. There is a lot to learn and to digest in the process of making a wise decision, and we all know it's a lot harder to wade through all of this when you're in constant pain.
    Thanks in advance.
    Fused T-3 to L-3, Aug 25
    Hardware removal surgery, Nov 2, 2010
    Fused T-10 to L-2, osteotomy, Feb 22, 2011

  • #2
    If your sister-in-law's aunt already is in serious pain and taking narcotics, and is having trouble ambulating, I would guess that the Doctor is probably correct in saying she would be wheelchair bound if she doesn't have surgery. I would get her to the very best revisionist scoliosis spine surgeon possible for a second opinion. You didn't say what levels were already fused. Has she been to a pain clinic or had any PT? I haven't a clue whether diabetes would preclude her having spine surgery, but I don't think her age should be a problem. Linda may know more on this subject.
    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
      She had been going to PT (I don't know how long, or if she thought it was helping), but the doctor d/c'ed it yesterday, explaining that, at this point, it might be harmful.
      Fused T-3 to L-3, Aug 25
      Hardware removal surgery, Nov 2, 2010
      Fused T-10 to L-2, osteotomy, Feb 22, 2011

      Comment


      • #4
        My story may be similar~~~

        Hi, I have been on here several times and am so glad I found this place. Not that the stories are always happy, but it opens up avenues and ideas to help get a person through so many trying issues . I had a back surgery in 2006 at age 52 yrs. old. It was a double fusion at L3/4 L4/5 with instrumentation.(2 cages ,several rods and screws). Fast forward to 2010, and I am in terrible pain and have been for several yrs. Never did get off pain meds. But to make this shorter , I went to a different spinal surgeon and he said you now have scoliosis and sent me to another surgeon that specialized in spinal deformaties. Only more in the pediatric end of it. But I live in an area that's quite remote, and was desperate. So he said he could make me good as new. I, at this point, was bent over to the right, and my ribs were hitting my hip bone. He said this was caused from the first surgery, because of the stabilization of the discs that were fused , everthing above it was collapsing and formed a S shap going up to my neck. I went into surgery to fix it July 1st of 2010. And after I was done I went home, but it didn't work, as the surgeon said he should have gone farther up with the rods.(first surgery-T11 to pelvic) So Oct 20th 0f 2010 I went back into surgery and he extended the rods up to T3, and did an osteotomy on me at L3. I am now 9 months out and am sorry to say that I can't hardly walk. I have flatback syndrome and saggital imbalance. I pitch forward when I walk and my legs jutt out in front of me . My legs are hurting from putting so much pressure on them and trying to stand straight has me wore out. I could end up in a wheel chair and no one told me that. Its just my own gut feeling. I need to find a more experienced Dr. This is such an invasive surgery and very hard on the person going under the knife, as there are so many issues to deal with. If your friend is in pretty good shape(other than diabetis)she can get through it. It just takes lots of stamina. I know others on here that have had revisions and did fine. Some in there 60's and older. Ofcourse it all depends on your health otherwise. I think pain wears the body down! I am now hoping to get stronger and find the right Dr. for my case. I WISH HER GOOD LUCK! She is lucky to have a nice person like you that cares!! Like you said , it's hard to wade through all this when your in pain!! She just has to not give up. Sounds like she had discs that ended up slipping and sliding on top of her fusion. And ended up in a curve. Keep us posted. babyboomer16
        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


        • #5
          Hi...

          The diabetes definitely adds a level of difficulty. I'll ask a few of our surgeons what they would do. As mentioned, the UCSF surgeons do a LOT of surgeries on older folks. It's not at all uncommon to see people in their 70s or 80s having multi-level fusions, and having great outcomes. (We think these older folks probably come to us as sort of a last resort, because their pain is so great. So, when comparing them to patients in their 40s, they probably have more motivation.)

          Personally, at your SIL's age and condition, I wouldn't be too afraid of being in a wheel chair. I usually dislike what seems to be a little bit of blackmail by doctors, threatening patients that they'll end up in a wheelchair. But, like Sally, it sounds to me like that could easily be a reality.

          With all that said, it's possible that she might be able to get away with a smaller surgery. I know that we've all heard for years that you can't just fuse a small part of a curve because it will cause the rest to progress, but one of our surgeons has been doing a lot of surgeries where just the painful levels are fused. He's done about a dozen patients, with only one patient so far needing an extension of the fusion. The results are all short-term (1-5 years), however. In the case of a 70 year old, one might not be too concerned about curves progressing.

          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


          • #6
            Thank you, Linda. . .I am interested to learn the opinions of some experienced surgeons. Like I said in my p.m., I am quite concerned. .and even though I have had a long fusion for scoliosis as I approached 50, and then needed a revision surgery, I don't feel at all qualified to offer my aunt-in-law an opinion. . .our histories, and how many years are behind/ahead of us, are too different.

            babyboomer. . .your story just drives home the need for a woman of 70 to not proceed willy-nilly. . .things don't always go as advertised.
            Fused T-3 to L-3, Aug 25
            Hardware removal surgery, Nov 2, 2010
            Fused T-10 to L-2, osteotomy, Feb 22, 2011

            Comment


            • #7
              I received an e-mail from her husband. The original surgeon recommended Dr. Frank Phillips, so they are in the process of getting their insurance approval. I checked, and he is on the SRS list. I wish that she didn't have to go through this, but, with a good surgeon and a little luck, hopefully things will work out well.
              Fused T-3 to L-3, Aug 25
              Hardware removal surgery, Nov 2, 2010
              Fused T-10 to L-2, osteotomy, Feb 22, 2011

              Comment


              • #8
                Best of Luck!!

                Just wanted to jump on here and wish your SIL's aunt the best of luck as she goes forward with this. Pain wears the body down and I'm sure she is desperate to get help!!Keep us posted. God Bless~~~babyboomer16
                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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