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Thread: I Think I'm Really Going To Do It This Time

  1. #1
    Join Date
    Oct 2014
    Location
    Arizona
    Posts
    112

    I Think I'm Really Going To Do It This Time

    Hi All,

    I found this forum after my surgical consult this summer and I want to thank all of you for bravely sharing your stories, the good, bad and ugly. I initially thought I would just do the surgery and didn't want to know too much about it because I knew it would be hard and figured knowing all the gory details would only make me worry unnecessarily. But what the surgeon told me popped my happy bubble. He said I would need a fusion from T-1 to L-5, anterior and posterior and that it would take 6-8 hours and I would likely need at least 4 units of blood.

    I was shell shocked after that, I really had no idea it would be that big of a surgery. So I turned to the internet and found you. And thought about it more. And did more internet searches with the names of local surgeons and the word 'BOMEX', which is our board of medical examiners and discovered that patients have died from this surgery here and one spine specialist even lost his license due to multiple bad outcomes.

    So I realized that I needed to consider the surgeon very carefully, this is no gallbladder surgery that most surgeons do very well. I just saw a second spine surgeon, Bill Stevens and he told me yes, when I asked him if he thought surgery would be a good idea for me. I trust his ability, he does one and only one of these a week because he said it's long and exhausting. So I'm looking at probably being scheduled for January, but need a DEXA scan and another consult before I can get on the schedule.

    I had a traction X-ray this week and it only improved my curve 10 degrees out of 70. So my curve is stiff and he says I have lumbar kyphosis which needs to be balanced. I'm so ready to do this, wish I could do this sooner but also secretly glad I get to have a nice Christmas with my family. Don't really want to scare my 31 yo daughter who also has scoli but lives far away now. Wishing I had done this 4 years ago when a different surgeon talked me out of it as I was premenopausal then which would have been in my favor.

    Thanks for listening, I'm happy to have found you!
    Liz

    AP Jul 2014.JPG
    Last edited by Lizardacres; 10-25-2014 at 04:31 PM.
    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

  2. #2
    Join Date
    Mar 2005
    Location
    east coast
    Posts
    359
    Welcome to the forum Liz!

    I think it's great you are doing the smart patient thing doing lots of research before you set the date. I ended up scrambling earlier this year seeking 2nd opinion when I should really have done that from the getgo.

    You'll find incredible amount of help and information here, so much so that when you have your meeting with your surgeon for pre-op (when it happens) you may already know everything your surgeon tells you. At least, that was the case with me.

    If you let us know where you live, folks will be able to chime in with names of surgeons close by you that are highly regarded in the community.
    Last edited by green m&m; 10-24-2014 at 11:39 PM.
    30 something y.o.

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T68, L?

    Posterior Fusion Sept 2014 -- T3 - L3
    Post - op curve ~35



  3. #3
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Hi Liz, and welcome for the forum. This forum saved me from losing my mind when I was told I'd need T4 - Sacrum with pelvic fixation. I was the opposite of you, I needed to know every gory detail! I found the more I knew, the less I feared. I spent my waiting time getting fit and that helped with the nerves. I can tell you that I found the prospect of this surgery far worse than the actual surgery.

    So ask as many questions as pop into your mind. Folks here are happy to help and at the same time, know what you're going through. Best of luck!
    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

  4. #4
    Join Date
    Oct 2014
    Location
    Arizona
    Posts
    112
    Thanks for your kind welcome, it means a lot. When I told my dad I was planning this surgery, he called his sister and told her about it and her response surprised him. She said that their dad and their dad's sister both had scoli (uneven shoulders), as well as herself. My dad had no idea! He knew that he also had the uneven shoulders and even told me that, unfortunately, he had given it to me but was shocked to learn that nobody had told him this family history. Family secrets can be pretty crazy!

    Anyway, given that the female to male ratio is something like 8:1, and I have two direct male descendants in a row, it got me to wondering about the genetics. I wonder if certain genes are more likely to affect males and females equally. I'd be very interested in reading more about the genetics if anybody has any good references.
    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
    Welcome, Liz!
    I'm embarking on my journey right now! We left home (columbus, Oh) just 30 minutes ago to travel to St. Louis for my T3 - sacrum scoli surgery on Monday.
    I'm SO thankful for this forum!
    My new friends helped me:
    1. find the 'right' dr & run from my local one. 2. learn from their detailed experiences. 3. ask questions 4.
    figure out 'what the heck' to pack 5. there's more, but you get the idea!

    I wish you the best for your journey & perhaps I can be of help ' from the other side'!
    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
    6,798
    Hi Liz...

    I'v been hearing for years that male scoliosis is more lethal than female scoliosis. I don't know if that's actually true, however, as I've never read any research on the topic.

    I'm glad you found Dr. Stevens. When I read that the first surgeon was recommending T1-L5, I felt ill. Starting and ending at those levels is almost certainly a recipe for disaster.

    Best of luck with your journey.

    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    If you've signed up and are having trouble posting, please check your spam folder. An email was sent to the email address which you subscribed. You have to follow the instructions in that email. Done that and still having trouble posting? Contact Joe O'Brien at jpobrien@scoliosis.org.

  7. #7
    Join Date
    May 2008
    Location
    reno,nevada
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    3,552
    Quote Originally Posted by LindaRacine View Post
    I'v been hearing for years that male scoliosis is more lethal than female scoliosis.
    Iím still here and plugging along just fine.....(smiley face) This deserves its own thread as I think there are none on this topic. Do we have the advantage due to our bone integrity? or lack of osteoporosis issues? What are the differences from a surgical standpoint between males and females of different age groups?

    Liz, I agree with Linda, if your going to do a full at age 55, take it the pelvis. You want to one stop shop.

    I donít have much faith in disc integrity at our age, as we age. DDD is a major problem, and painful. My neck has been interesting science experiment lately.

    I have also done a cholecystectomy, it was easier than doing my taxes.

    How is the pain?

    Welcome to the forum

    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

  8. #8
    Join Date
    Oct 2014
    Location
    Arizona
    Posts
    112
    Hi Ed, To clarify, at my 2nd opinion appt with Dr Stevens, he felt that T-6 to the sacrum would be likely. But we haven't finished with the work up yet, so no telling yet exactly what what he will want to do. Quite a difference from what the first doc suggested! I am resigned to fusion to the sacrum and agree with you that this makes more sense for me. Especially when you see my X-ray of L-5. I'll try and post it.

    My neck has issues on X-ray so maybe this is why Dr Stevens wants the thoracic fusion lower; so the top of the fusion is well away from this area. I also have moderate cervical dystonia so there are forces pulling my cervical spine. He said he is concerned about this area when it comes time to straighten me out. Doesn't want the spinal cord compromised at this level. This is why I have to get a DEXA scan.

    Honestly, I have Linda to thank for pointing me in the direction of Dr Stevens, she has mentioned him in more than one post and he is an SRS doc. I haven't seen much in the way of positive reviews for the Phoenix docs. I suppose I could go to CA but would rather not.
    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

  9. #9
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690
    Liz,
    Welcome to the forum. You will find this forum to be full of information, opinions, and tons of caring supportive people.
    Karen

    Surgery-Jan. 5, 2011-Dr. Lenke
    Fusion T-4-sacrum-2 cages/5 osteotomies
    70 degree thoracolumbar corrected to 25
    Rib Hump-GONE!
    Age-60 at the time of surgery
    Now 66
    Avid Golfer & Tap Dancer
    Retired Kdgn. Teacher

    See photobucket link for:
    Video of my 1st Day of Golf Post-Op-3/02/12-Bradenton, FL
    Before and After Picture of back 1/7/11
    tap dancing picture at 10 mos. post op 11/11/11-I'm the one on the right.
    http://s1119.photobucket.com/albums/k630/pottoff2/

  10. #10
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Welcome to the forum. Here you will find the nicest people and you will get your questions answered.

    By the way, if you want to come to CA, I have one of the best surgeons for you

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  11. #11
    Join Date
    Dec 2008
    Location
    illinois
    Posts
    766
    Liz, welcome to a great forum of friends and great information. We do learn a lot from our own experiences. I think this information is what helps the most. The ideas and suggestions allow us to come up with the questions for our own surgeons.I felt better prepared with this information.Jackie

  12. #12
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,526
    Welcome, Liz! Glad that you found a surgeon that you like who does scoliosis surgeries regularly. Don't fret about the fused to the sacrum bit. I really do not feel limited at all.

    Ed's comment is very appropriate, unlike fine wine and cheese, women do not age well. Degenerative changes are in our future....it doesn't get better. Take your calcium and vitamin D.

    Susan
    Last edited by susancook; 10-26-2014 at 05:09 PM.
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  13. #13
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,552
    I donít know if there have been any other Cervical dystonia patients that have posted here.......you could try the search box. I can see why Dr S would want to stay lower at T6.....Liz, I did look at your x-ray and it looks like mine years ago,(Lumbar tilt at L5) also Jess has the same situation. You didnít answer my pain question, but I can imagine that you are having your pain events. I like using the word ďeventsĒ for specific 9 and 10 level major pain experiences. The crippling stuff....

    I thought long and hard before committing and setting my date. It took many years of ďeventsĒ before I was ready. Of course, I had to have all my ducks in a row, the financials, insurance, work situation, expecting a long 2 year recovery, and hoping that nothing too bad as far as complications would happen....

    In the end, it was all about my blood work. After my surgeon looked, he mentioned that I was in really good shape, I can tell you have been skiing your whole life.

    He also told me, ďIt will helpĒ Which was the clincher.....my pain being through the roof, I was going to take any improvement....

    People that have major pain seem to do much better with surgery....itís the ones who donít have pain that are not satisfied.

    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

  14. #14
    Join Date
    Oct 2014
    Location
    Arizona
    Posts
    112
    Ed, you noticed I skipped your pain question :-) The short answer is yes, the pain gets up to the unbearable range at times, but this is not exactly what drives my decision; it's more nuanced than that. To me the question is why do I really want surgery and why now?

    The real truth is that my life has gradually been diminished starting in my late 30's when I was diagnosed with dystonia. Because it affects my hands so much, I got to where I couldn't function at work as I had a job back then that required a lot of writing and a computer was not a possibility. I received Botox injections in my arm, which helped enough to get by but I knew I needed to make a career change; I couldn't afford not to work!

    I went to grad school, which became so difficult before the end as my dystonia progressed and my neck was a misery and the neurologists tried all kinds of drugs to afford me some relief. But of course they had the kind of side effects that make it hard to go to school. But I managed to graduate and start a new career.

    It's hard to remember when my back started acting up as I thought the back pain was part of the dystonia. And anyway, the cocktail of drugs for my neck also helped the back pain. I do remember that at one point the back pain got so bad that I went to a new neurologist (after getting disgusted with the one I was seeing at Mayo, when he sent me for a psych consult without telling me why). He was to give me Botox injections in my back. But it was a strange experience- it hurt terribly when he injected and having received numerous Botox injections in the past, I knew this was odd. Next, I started feeling kind of wonderful and my appetite increased greatly within the week. I really think he gave me steroid injections so I never went back to him. But it did help. But I don't want steroids, too afraid of the side effects.

    After that I just stuck with my PCP who is so wonderful and caring and believed in me. She provided any drugs if wanted to try so I spent about 10 years with gradually increasing back pain and the tools to manage my pain.

    About 4-5 years ago, work became harder and harder. I was exhausted and was really unable to participate in my favorite activity, hiking, anymore due to back pain. I felt like I was totally letting my husband down because I didn't have the energy to do anything but work and even there I was feeling I was only about 50% which made me feel so guilty. I saw a surgeon around this time but he discouraged me from having surgery. I later found out he doesn't even do the kind of surgery I need.

    This spring I was feeling worse and so started making the rounds. My life seems so diminished and limited, I would say I'm functioning at about a 30% level now. My feet are numb much of the time and I can only walk 5-10 minutes without wanting to lay down and take drugs due the pain. I need to work a minimum of 5 more years to start collecting my state pension, but I don't feel like I can make it the way I am now. Even if I could get disability, which I doubt, this isn't the kind of life I want.

    My retired husband does ALL the housework and cooking to support me, but he wants me to travel and do stuff with him. I want this too but retirement seems far away and I just don't have the energy, the muscle spasms really sap my energy and make me fatigued. I'm such an out of shape couch potato and I hate it! I was always very fit when young.

    So really it's a quality of life issue. Yes, I can take drugs, lie in bed and control the pain, but I'll take the odds on the surgery. If it works out it will be transformational. If not and I end up in a wheelchair, maybe I will be able to get disability and travel and at least know I tried to live my life up to my potential.
    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

  15. #15
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,552
    Quote Originally Posted by Lizardacres View Post
    So really it's a quality of life issue. Yes, I can take drugs, lie in bed and control the pain, but I'll take the odds on the surgery. If it works out it will be transformational. If not and I end up in a wheelchair, maybe I will be able to get disability and travel and at least know I tried to live my life up to my potential.
    I understand.....Quality of life is something many donít understand unless they lose it. You have to struggle to know.....

    I would ask about your cervical dystonia situation and how comfortable he feels with it....... Have there been other cases? Has he seen other cases? Can he communicate with anyone else for comparison, (SRS, UCSF, etc) A surgeons pow wow if you know what I mean. Would you use a neuro surgeon if you operate on me? I took my time in my hiring process, that I did. Multiple visits and discussions. Are you the right surgeon? Am I the right patient?

    I am an RVíer.....I bought my 1st RV because of scoliosis and I must say itís the best thing l have EVER done!!!! LOVE IT! You can lay down on your own bed when you want, sleep when you want....of course, you get the idea. I also read RV blogs and check out where others have been and camped. There are also wheelchair RV people out there that do it also! I like to cook 5 star meals in 5 star locations....I can go on and on and on......Now, donít go nuts and buy a magic bus now...(smiley face)

    RVing also gives you a really good reason to walk, and think, and recover....traveling also repairs the soul

    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

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