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LAST CALL: "surgery for convenience?” Also, is the Cobb angle over-rated?

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  • #31
    Originally posted by Confusedmom View Post
    Hope he can get all your neuro & scoli issues fixed soon so you can move on to other things!!!
    You know, this is my great dream at this point. Even more than getting on top of pain! NOT thinking about my spine all the friggen time!

    Keep us posted! How soon is he talking surgery?

    Evelyn
    Thank YOU!
    November. First he said Nov. Then Dec. Then I pointed out the difference and somewhat sheepishly, he turned it back into November with the warning that he might have to be traveling soon after my surgery...

    Crossing fingers (still contingent).

    It WOULD be nice to be within driving distance - even though five hours isn't quite across the street (almost) like some of you guys...
    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


    • #32
      Hi Amanda,

      I am so glad you had a satisfying and enlightening visit/meeting(s) with Dr. Shaffrey. I think once he got his questions out of the way he was "all in." Believe me he does not rush toward surgery. He is ultra-conservative, as you know from my experience, so you can know he thought it pretty necessary. I am so glad for you that relief is in sight. And so soon! Yes, we were very impressed with him; my mother having been a nurse for a time was impressed with his credentials ("he's all over the web re: scoliosis!")

      If I can be of support in any way let me know. And about the follow-up, I am certain he was concerned with success of the surgery rather than studies. Like if I don't take care of my glasses I just bought, the warranty has no value (if I were to purchase it). Anyway, very, very glad for you.

      I hope you could enjoy beautiful Charlottesville! Stay in touch.
      Last edited by dailystrength; 08-30-2010, 09:48 PM.
      34L at diagnosis; Boston Brace 1979
      Current: 50L, 28T

      Comment


      • #33
        Originally posted by dailystrength View Post
        Hi Amanda,

        I am so glad you had a satisfying and enlightening visit/meeting with Dr. Shaffrey. I think once he got his questions out of the way he was "all in." Believe me he does not rush toward surgery. He is ultra-conservative, as you know from my experience, so you can know he thought it fairly necessary.
        Greetings, Christina!

        And so MANY thanks again for you most especially!

        If you hadn't been so enthusiastic and called my attention to him (his CV blew me away) I would definitely not have pursued the contact given the travel difficulties - which as it turned out, are surmountable.

        Also, he is far and away the most attentive and yet dearest, most "Menschlich" surgeon I've met with. A combination brilliant surgeon/Teddy Bear! Meant in the most respectful way, as I'm sure you know. What could be more comforting at this frightening juncture?

        Yes, indeed, I know how conservative he is! It's not just you. Jolene virtually told me he would NEVER accept me for surgery until (at the least) I'd been his patient for years and exhausted all options. He has one patient older than me with the exact same scoli curves (and lumbar DDD) who has been flying in from NYC to see him every six months, for years. She gets pain injections there, sees him and then flies back - with no surgery lined up.

        Knowing that alone, made me despair of acceptance. What made the difference is the incontinences - validated by uro work-up and the CT myelogram results. I certainly wish I didn't have these problems, but at least, having them, it's comforting to know I have a surgeon who takes them seriously and is competent to deal with them neurologically! Nb I noticed some time ago that almost the only spinal symptoms described on-line as "emergency" are these incontinence issues. They are clearly not life threatening per se, but they ARE "quality of life threatening".

        The fact is, that it is probably already too late to reverse them (that's the way the ball bounces with cord damage) - he virtually said as much. Hopefully, though, their progression can be arrested. There may be other surgeons who would perform a lumbar decompression along with deformity surgery (I see decompression listed on their operative plans) but it's NOT the same as having a neurosurgeon on board. If things don't work out, I know I have him there - for good.

        And - another fringe benefit - Charlottesville IS just gorgeous! What a wonderful surprise. My son who attends Duke, gushed with envy about the beauty of the UVA college town I don't think I've seen a lovelier one anywhere - spoken as a resident of Penn State's capital campus which sadly pales in comparison. Even Cambridge Mass isn't as charming. There's also a nice branch of his fraternity - which could come in handy. Another great (unexpected) benefit is that the hospital has a discount dorm style hotel - four doubles to a suite including kitchen, LR laundry and hospital shuttle. Only $10/night pp. - and easy enough to bring along 4" foam toppers for the admittedly rock hard beds!

        This could save me BIG BUCKS while I'm in hospital and rehab as long as SIL keeps her date with destiny for me...

        .am so glad for you that relief is in sight. And so soon! Yes, we were very impressed with him; my mother having been a nurse for a time was impressed with his credentials ("he's all over the web re: scoliosis!")

        If I can be of support in any way let me know. And about the follow-up, I am certain he was concerned with success of the surgery rather than studies. Like if I don't take care of my glasses I just bought, the warranty has no value (if I were to purchase it). Anyway, very, very glad for you.

        I hope you could enjoy beautiful Charlottesville! Stay in touch.
        Thank you again, Christina - your offer means a lot. I'm looking forward to meeting you instead of just your sensed aura! I appreciate your reassurance debriefing me about his questioning my choosing him! I thought somehow he considered it peculiar of me to be willing to travel such a distance - for HIM.

        But then again, perhaps he still thought I was where I was to start, where I was unable to afford repeated plane fares and had requested a referral (that I then didn't follow-through on). I may never know. Everyone has their enigmas! Besides, we're all entitled to be curious.
        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


        • #34
          [QUOTE=Back-out;107150]Need to talk to the office abt this - tomorrow, hopefully. I was told explicitly as I left, that his coordinator would SEND me notification.

          QUOTE]

          Ooh, I hope you can keep this rolling forward...since he's talking November for the surgery, you shouldn't have too long to wait.

          Good luck Amanda!
          Surgery March 3, 2009 at almost 58, now 63.
          Dr. Askin, Brisbane, Australia
          T4-Pelvis, Posterior only
          Osteotomies and Laminectomies
          Was 68 degrees, now 22 and pain free

          Comment


          • #35
            You're welcome and I am just glad my experience could help someone- you! Yes I would be glad to meet you. I am glad the hospital has suitable accomodations because already my brain was buzzing - but I live up a flight of stairs. Plus it will be much better to be on hospital premises after such a major surgery. But just to have a contact, a friend, in town- that I can be! My life gets pretty busy but I am SURE I can fit you in. This really is a priority in my life - working around the scoliosis and communicating with others who understand. So I am anxious to meet you.
            Last edited by dailystrength; 09-02-2010, 12:06 PM.
            34L at diagnosis; Boston Brace 1979
            Current: 50L, 28T

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