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Thread: Back and about to Bite the Bullet, but...(lengthy catch-up)

  1. #1
    Join Date
    Oct 2009
    Location
    PA
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    798

    Back and about to Bite the Bullet, but...(lengthy catch-up)

    Hi, all! I was unable to follow through on surgery five years ago, because family members bailed on promised help. In-between, a youngish son (now 26) has expressed willingness to help during and after surgery, though naturally with hired females for hands-on help, at least, at first. I dropped out of the site because the whole issue became too depressing, since I was unable to act on the considerable research I did. I hope some of you will be willing to plow through this lengthy updating, and help with current decision making.

    In the intervening years, my spine has suffered more degeneration especially in the lumbar area, with increased neurological problems from the spinal stenosis. Two vertebrae have fused on their own, and I am more pitched forward when I walk (with support only, > 100 yards) . The curves have not changed much (~60, 30, 60 S-shaped), but I have lost almost an inch more in height (in all, now 5+"), while finding myself nearly ten lbs heavier (struggling to get that off before any surgery). It seems this is mostly from loss of disk space, however (Don’t know why that wasn’t clarified before; I now understand I can gain back at most 1 - 1 1/2 ‘ from any correction). I'm on Medicare now, but though I‘ve lost my excellent secondary policy (an indemnity plan that would have reimbursed me $40K directly!), I find my worst fears haven’t materialized; all the surgeons I'm revisiting, accept Medicare. They are: Drs Errico and Schwab in NYC, NYU Langone (they would be operating together), Dr. Michael Neuwirth (now at Mt. Sinai), and hopefully, I’ll soon be invited back to see Dr. Christopher Shaffrey at UVA. Only Dr. Schwab is new and even then, Dr. Errico said before, he only wanted to operate with him. (Guess my spine is a challenge).

    It sounds like their surgical plans have changed in at least two major regards. 1) While they (all three) are still thinking of beginning my fusion at T3, T4 to the pelvis, these three NY surgeons would no longer be thinking of an A + P procedure (Dr. Neuwirth had been planning to leave a week to ten days in-between!). Instead, they'd perform one posterior operation with various “LIFs” to reinforce their work. Secondly, they would use only limited BMP, instead mixing it with my own harvested iliac bone. On the one hand, I much regret losing my iliac crest (I remember hearing many pts found these graft sites the most painful thing, long-term. What’s more, as a figure artist, this is my favorite part of human anatomy! It's OK to laugh!). OTOH I recall when the NYTimes published the first findings associating BMP with bone cancer (and possible spinal cord impingement), so perhaps reducing its use, reduces this risk – already, small, so I am told.

    No one, I should add, was keen on fine-tuning their intentions since I came with one leg in a cast – a gift of a recent ice-storm! That made the evaluation necessarily incomplete (supposed to return, sans cast). I hope to see Dr. Shaffrey, in under two months. He wants my new MRI and a referral, which I hope will be enough.

    Wondering what if anything, he will have to say about how he might want to approach my spine now, if different. Five years ago, he was the only one of six surgeons I saw, who planned to do an all-posterior approach – and wrap me up in under seven hours (compared to far longer “under” elsewhere and mostly, staged). This put me off at the time; now, I think perhaps he was in the vanguard! Is using less BMP standard - and is the field returning to hip grafts? I recall reading that Dr. Lenke refused to operate without BMP five years ago, despite the warnings coming out. But maybe even he has changed by now for both economic and ethical reasons. (Heads up - he’s moving to New York City in July! Perhaps this is already old news to you all. I sure I'm still below his deformity cut-off, so it’s not as exciting for me as otherwise). New York City is a five hour drive – the same as UVA, but with much worse traffic and potholes! A major reason to prefer Dr.. Shaffrey, all by itself. It was bad enough hitting the bumps with a broken leg!

    Greetings to old friends! I’m pretty nervous about the surgery still, but more resigned. It hurts! I’m still beset with worries, but don’t want to age out of the option. So much remains up in the air, though: how can I get fit enough for the surgery (in time), should I have my knee joint replaced first, what if I have to delay the spine op til late summer - or even next year (undesirable). I've become understandably shy of ice here in the NE (people have this surgery in the Winter? How?). I also worry about how to plan without trashing my son’s internship needs, already late. It's scary to contemplate the possibility/probability of future surgery. I realize complications are frequent, and I don't know how I would proceed. Meanwhile, though, I'm trying to hope for the best, even though I can't plan for the worst.

    Any and all comments welcome. I need to decide between surgeons, locations (part of choosing surgeons) and scheduling times, with many contingencies out of my hands. Which factors should I prioritize? (Trying to into a pre-surgical frame of mind, too)
    Last edited by Back-out; 04-03-2015 at 12:27 AM.
    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

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,547
    Amanda, I guess your going to have to change your user name to Back-in. We missed you while you were gone......

    Switching surgeons because of potholes is a good one, thatís never been discussed on any decision making threads. Classic! I love it.

    Are you feeling better about having your surgery? Sounds like you are pretty close to making a decision......


    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  3. #3
    Join Date
    Oct 2009
    Location
    PA
    Posts
    798
    Hi, Ed! Great to hear from you! You're so sweet. I missed you (in fact, I ALMOST PMed you from New York during the surgical visits, as I felt my heart racing with pending decisions.)
    Yes, I guess I am close. To be exact, I didn't willingly "back-out" before. It's not the kind of surgery one can go into all alone (as I have many others). I always meant my nom-de-net name to suggest that my back was out LOL but I'm afraid it became a double entendre.

    Having kind of a "now or never feeling" about it, especially because of my son's involvement. He's in suspended animation until I do it. And I AM sick of being disabled. It's always going to be a calculated risk.
    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

  4. #4
    Join Date
    Oct 2014
    Location
    Arizona
    Posts
    112
    Hi Amanda,

    Welcome back! Somewhere I read that you should ask yourself how much longer you expect to live and then ask yourself if you would be OK with a with at least your current level of disability for all those years. Of course there is some risk with surgery so you have to factor in your comfort with risk as well.

    I'm 11 weeks post op now and although I haven't seen your xray, our curves sound very similar. I too had lumbar kyphosis. The first month of recovery was not pleasant but I am so glad I did this. In fact, I went to work yesterday to turn in my 'OK to return to work' letter and attended a staff meeting. I return to work 50% on Monday and am so ready.

    My surgeon's approach was similar to what you are describing, except I did have a staged surgery, both ALIF and PLIF. He only used one packet of BMP and this was during the ALIF around L4-L5. There were only two days between my surgeries. I didn't realize until I received my operative report that he harvested my iliac crest on one side. I had no pain there and would have never known had I not read the report. I'm sure it was in the consent but I just don't remember. If you look at my thread on page 7, post 92, you can see my post op xray and see how much was harvested. I don't notice any difference in the way my hips look from the outside at all. The side he harvested from was the side where my hip stuck out preop - I wonder if he did that on purpose :-)

    I think my surgeon was fairly conservative with the correction also, due to my bone condition, age and amount of rotation. He told me up front to expect about 40% correction, although it came out to around 50% and that his goal for me was to stabilize and balance my spine as I was starting to lean as my lumbar was slipping and the curve increasing.

    I think there is no question that techniques and best practices evolve over the years which is the only good thing about waiting to do the surgery. So I wouldn't be worried that the plan is different now than it was the last time you made the rounds. Good luck!
    Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
    ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
    Fused T-7 to S-1 with pelvic fixation

    After 38* lumbar

    Xrays
    Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

    After: http://www.scoliosis.org/forum/attac...6&d=1424894360

  5. #5
    Join Date
    May 2013
    Location
    Grove City, OH
    Posts
    275
    Hi Amanda! This is a BIG decision. I'm 5 months post op & doing well. My surgery had to be postponed twice, but that gave me much more time for research.
    Dr. Buchowski, in St. Louis, was trained by Dr. Lenke. I had posterior T3 -S1 fusion and 'other stuff' - it's probably good that I can't remember! Dr. b wanted to use 7 kits of BMP, but I had to make a financial commitment when my ins did an initial denial. That stuff is SO expensive! I committed to 2 kits ($6000 each). Dr. b used the BMP at the beginning & end of the fusions because those areas are the most stressed during healing. He used my own bone for the rest, but didn't need any from the iliac crest. Ins ended up paying for the $12,000 BMP cost - whew!
    I was fortunate enough to be able to go to an intense rehab facility - 3-4 hrs of PT per day. That was extremely helpful to my recovery. More than anything, working with therapists & nurses gave me confidence to keep working at my recovery. Is there any chance you could be approved for that type of rehab? That's a good question for your surgeon.
    My curve became aggressively worse between 55 yrs old & 60. My pain was manageable, but I kept getting worse & had to do something. I lost 5" in height. I got back almost 3"! If you wait too long, surgery may not be an option.
    Do you have health aides that could come in while your son is at work or in school? Do you have a support group at church? Neighbors?
    My first 2.5 months of recovery was physically hard on my husband. He had 2 surgeries prior to mine & he's scheduled for another one in May. I guess I took advantage of having a window of opportunity to 'go for it'.
    I'm glad your son is able to make a commitment to care for you - that's a good son! Sending prayers for clarity, as you make this decision.
    Peg
    61 yrs old
    75 degree lumbar curve with thoracic kyphosis
    T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
    Working on healing in Columbus, Ohio!

  6. #6
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Hi Amanda...

    I'll apologize in advance, as I don't have time to write a novel, but wanted to comment on several of the issues that mention.

    First, I wanted to put your mind at ease about the age thing. At UCSF, we're typically doing surgeries like yours on patients as old as mid to late 80's. (I personally don't think I'd opt for such a big surgery in my 80's, but I don't have the pain these patients have.)

    I don't know a lot of Dr. Shaffrey's patients, but I've been in several meetings with him over the years, and feel like he's probably well qualified to do your surgery. I sense that he's a bit conservative, and doesn't like to operate unless he's reasonably sure he can help the patient. I think that's an excellent quality.

    As far as needing someone to help you during recovery, I think you'll find you won't need help for very long, especially if you end up going to rehab after the hospital. I had a big revision surgery in 2010, and went home after 5 days in the hospital, by myself (I live alone). (That's actually a little bit of a white lie. I went to stay with a friend, but his furniture was so uncomfortable that I ended up going home after a night or two.) I had friends to rescue me when I needed help, and I had people dropping off meals occasionally. I signed up for my county paratransit and used it almost exclusively until I could drive. I think if you have someone who can help you for the first week or two, you'll probably be fine.

    I wanted to mention that you should talk to the insurance people in your surgeon's office and in the hospital where you'll be treated. Since you have no supplemental policy, is it possible you'll get hit with a significant co-pay?

    Lastly, I hope this doesn't scare you off, but I thought I should mention it. I notice that you have Ehlers-Danlos. (I'm really sorry. That's an awful diagnosis.) Something to consider is that this spine surgery will be very traumatic to your body. It is not at all uncommon that we see patients with various syndromes who have big flare ups of their symptoms after surgery. I have a friend with Ehlers-Danlos who had cervical surgery, and spent the next 2-3 years with significantly worse symptoms. I think she's finally doing a bit better, but it's been a long haul.

    I hope you get all the issues worked out and you have a great outcome.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  7. #7
    Join Date
    Aug 2012
    Location
    San Francicsco Bay Area
    Posts
    127
    Hello:

    Sorry to hear your pain and height loss is driving you to have to consider surgery.

    I am interested that so many surgeons want to do a posterior-only approach. I wish that was the case with me, but I guess the revision surgeries are different, I guess I still don't understand it all. But at least with the posterior only you would not have to have major abdominal surgery.

    I thought it was very interesting that two of your vertebrae have auto-fused on their own. I have been trying to find info on autofuse, but found hardly anything. Do you know if those vertebrae completely fused or just partially? If you have this info, I'd be grateful if you would share it.

    Thank you so much and good luck to you,

  8. #8
    Join Date
    Jul 2012
    Location
    Warsaw, MO
    Posts
    373
    Backout, I tried to pm you back but your box is full. Hit me up at my personal email or let me know when your box is cleared. Hope things are well.

    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

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