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  • Sharon C
    replied
    Originally posted by jackieg412 View Post
    Good luck in your scoliosis journey. The road can be challenging for sure.
    Thanks Jackie.

    Haven't been contacted for the CT scan yet, and I'm thinking any possible surgery would be Spring-ish, as COVID is straining resources right now anyway. We'll see if I survive another winter!

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  • jackieg412
    replied
    Good luck in your scoliosis journey. The road can be challenging for sure.

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  • Sharon C
    replied
    Originally posted by jackieg412 View Post
    Yes the osteotomy is a big surgery. By the right surgeon it can go very well. I had a two vertebrae osteotomy of C7, T1 last October.. It is still sore but worked to lift my head. Good luck on making your choice.
    Good for you Jackie!

    Man---your signature is something else! Looks like you've had your share of--EVERYTHING!

    I think I will only "consider" the ALIF for now, as I need to have it done locally, and think it's a "safer" option too. Grrr... I forgot the name of the colleague Dr Fry recommended, so I'll have to get his name when I go for the CT results and research his credentials. This is why it makes sense to have someone with you at these appointments. I miss having my husband around in these situations...

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  • jackieg412
    replied
    Yes the osteotomy is a big surgery. By the right surgeon it can go very well. I had a two vertebrae osteotomy of C7, T1 last October.. It is still sore but worked to lift my head. Good luck on making your choice.

    Leave a comment:


  • Sharon C
    replied
    Finally Saw Dr Fry Yesterday!

    I finally had my appointment with Dr Fry, the original surgeon who did my fusion in 2005. I had printed out my original correspondence from the top of this thread, ending at "today I am still plagued with flatback" so as not to seem accusatory in any way. I also included Linda's original response, recommending UCSF and those docs. I asked if he knew of these suggested surgeons, and if he performed any of these corrections, and/or if he had any suggestions as to who/where I might go from here. He said the osteotomy "wedge" surgery I had printed out from my web search was a really big surgery.
    He said he did these sort of things 20 years ago, but there weren't the necessary resources here, or something like that, so he stopped doing them. He seemed very receptive, and wanted to help.

    He mentioned UC Davis, and did say I could also go see Dr Berven (I think!) as suggested by Linda. I told him it would be difficult to pull off as I no longer had the support of someone to go with, etc. He asked if I had scoliosis films from recently. We took x-rays and he went over them with me. He said they didn't look "that bad" and that I might benefit from a lesser ALIF surgery--Anterior Lumbar Interbody Fusion from L-5-Sacrum as there was "room" there. He mentioned he was "slowing down" (he's in his 60's now) so it would be done by a colleague he thought highly of. I was surprised--and delighted that there might be a reasonable option for me here at home!

    Next step is my scheduled CT scan, and we will go from there. I'm excited and horrified, and will get all the info I can--especially any assurance I can find that I will end up better, not worse off. From what I have researched about this procedure, it's much smaller than the "big one" with less risk and recuperation time. Seems like something I could manage with good preparation, and without much outside help.
    I left there feeling really good-- understood and hopeful, a rare feeling about my situation these days.
    Any thoughts-- or anyone who has had experience with this procedure and can enlighten me would be greatly appreciated!

    Sharon

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  • Sharon C
    replied
    Originally posted by titaniumed View Post
    I think your doing great Sharon.....it's amazing how well your L5-S1 is doing.

    We should have done a time lapse video of us playing musical chairs! Ha ha

    Ed
    I'll guess my surgeon will feel the same way. As Linda said, pain is subjective. If only we could walk in another's (orthopedic) shoes. Yep, I can bend over and touch the ground 'til the cows come home. I just can't stand upright and walk them all back into the field!

    Yeah, the musical chairs thing was funny. It was nice to hang out with another scoli for a bit and relate...

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  • Sharon C
    replied
    Originally posted by Tina_R View Post
    Thank you. My problems might be a neuromuscular disease. If it is I can't help but think surgery triggered it somehow. So far the tests the neurologists have done are not conclusive, and they don't seem to want to do anything else. Is this why they say neurological problems take years to diagnose, from what I hear -- the doctors just wait until things get bad enough that they can finally identify the disease? I feel much worse than all the tests and radiology are showing.




    I agree it's hard not to have support at home. I don't know where I would have been without it. I wish you luck in your discussion with your surgeon. You shouldn't press him on whether the flat back was the result of something that could have been done better during surgery. He may not even know the answer.
    I'd be interested in hearing how it goes.

    It shows just how complex the body is---and in different people. So many variables. So frustrating for those who want answers... and relief. And I imagine for the practitioners as well. If only they could actually feel our discomfort, maybe that would give them the information they need to try to make an improvement.

    I agree with you that he may not have any answers. I don't believe he is a bad guy, and to his credit, I am mostly pain-free if I avoid trying too hard to stand upright, and just sit the hell down (with my special cushion, legs elevated etc. etc. ;-) and adjust myself when I get uncomfortable.

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  • Tina_R
    replied
    Originally posted by titaniumed View Post
    Linda, That's correct....Blame and envy cause massive amounts of anxiety....and as far as bear traps (thoracic gripping) are concerned, not everyone carries an umbrella when the rain clouds move in....It usually rains when they come, but not always.

    You can look at products and services done through history, and place blame on many things....Cars are a great example, many cars produced were inferior years ago, and we basically risked our lives driving around in them (and without seatbelts before 1986?). Who's to blame? Everyone? Who is to blame for scoliosis complications? Is it somebody's fault, or everyone's fault? Everyone's fault for lack of scientific advancement or training?

    To add to this, I have noticed the envy after I retired, "retirement envy"....and never expected that. Wow! Of course, I do not feel that I have to defend myself and will not. Not at all. It's always something new.....

    Banish the feelings and both words from the English language.

    Ed
    What does envy have to do with anything?

    Leave a comment:


  • Tina_R
    replied
    Originally posted by Sharon C View Post
    I am so sorry you too are having issues--especially when no one seems to know what to do. I sure hope you get some answers--and help soon.
    Thank you. My problems might be a neuromuscular disease. If it is I can't help but think surgery triggered it somehow. So far the tests the neurologists have done are not conclusive, and they don't seem to want to do anything else. Is this why they say neurological problems take years to diagnose, from what I hear -- the doctors just wait until things get bad enough that they can finally identify the disease? I feel much worse than all the tests and radiology are showing.

    Originally posted by Sharon C View Post
    My Doc doesn't even know why I am coming in to see him--it's been many years. Surgery was in 2005. Thus far I'm just on his waiting list. I will type out my questions and give it a go, and try not to cry about it in the office (I can cry at beer commercials!) I've just always imagined having a frank conversation about it, and hope he will. If not, I can say I tried, and give up the fantasy scenario, like a big girl.
    I might have considered going to the SF docs Linda recommended if I still had the support at home, but I do not.

    Best of luck in your own struggle,
    Sharon
    I agree it's hard not to have support at home. I don't know where I would have been without it. I wish you luck in your discussion with your surgeon. You shouldn't press him on whether the flat back was the result of something that could have been done better during surgery. He may not even know the answer.
    I'd be interested in hearing how it goes.
    Last edited by Tina_R; 04-15-2021, 11:08 AM.

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  • titaniumed
    replied
    Originally posted by Sharon C View Post
    So it looks like I need to wrap my head around letting it go.
    I think your doing great Sharon.....it's amazing how well your L5-S1 is doing.

    We should have done a time lapse video of us playing musical chairs! Ha ha

    Ed

    Leave a comment:


  • Sharon C
    replied
    Well..

    Originally posted by Tina_R View Post
    I think this is exactly what it is. He doesn't want to talk about it because he'd have to admit something he did is lacking. You're lucky he's even entertaining the conversation with you. I've had a similar experience. My surgeries from the last two years weren't successful and I'm trying to get someone to figure out what's wrong with me as nothing shows up in tests. Now I'm wondering if I'm developing flat back myself. I have gait problems, balance problems, and pain and they all seem to be increasing. I feel at risk of falling backwards when I walk and there's a feeling of pulling along my spine. One surgeon did tell me an angle in my hip area wasn't pitched quite right.

    You should go to a different surgeon to correct your problem. Make sure he's not a friend of the first surgeon. Better not to even tell the new surgeon who did the first surgery if that's possible. Don't wait any longer if you're going to do it. The older you get the harder it is to have surgery.
    I am so sorry you too are having issues--especially when no one seems to know what to do. I sure hope you get some answers--and help soon.

    My Doc doesn't even know why I am coming in to see him--it's been many years. Surgery was in 2005. Thus far I'm just on his waiting list. I will type out my questions and give it a go, and try not to cry about it in the office (I can cry at beer commercials!) I've just always imagined having a frank conversation about it, and hope he will. If not, I can say I tried, and give up the fantasy scenario, like a big girl.
    I might have considered going to the SF docs Linda recommended if I still had the support at home, but I do not.

    Best of luck in your own struggle,
    Sharon

    Leave a comment:


  • Sharon C
    replied
    Wow...

    Thanks for this Linda.

    That was my guess---not many know how to get it just right. Oh to have it to do over again. Only had the surgery because I couldn't work due to the pain, and wasn't happy with the thought of being on heavy meds for the rest of my life, and the additional problems that could create--starting at just 55 years old.
    My son-in-law at the time was an anesthesiologist, and was vehemently opposed to the surgery. I consulted with one of his suggested spine guys, and even he said he didn't see any other solution to my problem but surgery.

    So it looks like I need to wrap my head around letting it go.

    I appreciate all the input.

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  • LindaRacine
    replied
    Originally posted by Tina_R View Post
    There's a lot written about blame in this thread.

    When a delicate surgery like spinal fusion doesn't accomplish all that is expected, like the rest of you, I don't blame the doctors for that. I get that the surgery is complex, different in every case, and they are always learning how to get better outcomes, which they often learn from things that go wrong.

    However, when there are post-surgical problems I do blame a surgeon who won't acknowledge them and offer to fix them if it's possible.
    Tina...

    Obviously, none of us know what is going on with your spine. Your surgeon could just be a jerk, or it's possible that they're completely stumped. If I felt like you do about my surgeon, I would write a non-accusatory letter to them to let them know how I feel, and ask them for any recommendations they can make in terms of other specialists (spine and otherwise), who might be able to help make your life more tolerable. If there's no fix for whatever the problem is, it would be good to know what non-surgical coping mechanisms are available.

    You may have picked up from my posts, that I think spine surgery is a pretty imperfect science. Cases like yours are why I always encourage adults to try everything else before giving in to complex spine surgery. Unfortunately, your outcome is not all that rare. Because pain is so subjective, it's hard to know just how many people out there have a really bad long-term quality of life after spine surgery. There's probably as many patients who are truly happy with their results as there are patients who are really unhappy with their results. Fortunately, the biggest chunk of patients is somewhere in the middle. It sucks for those of you with really bad outcomes, and sometimes there's just no answer. When that's the case, it's awful for both the patient and the surgeon.

    --Linda

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  • Tina_R
    replied
    There's a lot written about blame in this thread.

    When a delicate surgery like spinal fusion doesn't accomplish all that is expected, like the rest of you, I don't blame the doctors for that. I get that the surgery is complex, different in every case, and they are always learning how to get better outcomes, which they often learn from things that go wrong.

    However, when there are post-surgical problems I do blame a surgeon who won't acknowledge them and offer to fix them if it's possible.
    Last edited by Tina_R; 04-11-2021, 03:56 PM.

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  • jackieg412
    replied
    All of this is so complex. Also it is call practicing medicine. The doctors refer to where they work as their practice.
    Now I changed surgeons from orthopaedic to neurosurgery I not once blamed my first surgeon. I didn't heal the thoracic area, I had a car accident and now in this last surgery new and different products are available. So things change. And hopefully for the better. Remembering that medicine changes all the time.

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