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Thread: decisions, decisions and different opinions

  1. #31
    Join Date
    May 2009
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    3,745
    Ev, i just read back over your entire thread...
    i once told you if i were you i'd consider waiting because you said
    you had no pain...but now i think you are doing the exact right thing by
    having the surgery at this time....
    i am absolutely amazed that you don't have pain!!!
    i need fusion T4-sacrum....and i have incredible pain....from the curves,
    the bad discs, pain from sacroiliac joints as well...
    everything was fine til i herniated discs, as i mentioned....then the pain kicked
    in and never stopped!!
    i think you would be taking a big chance not having the surgery now, especially
    when you are able to have Dr Lenke!
    without a crystal ball, you do not know if/when the day would come when
    you would wake up with typical lumbar pain that so many with low curves
    have..
    i hope you sleep well, knowing you made a good decision....
    i think you are doing the smartest thing...

    jess

  2. #32
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    Apr 2010
    Location
    Waterloo, IL
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    1,690
    Evelyn,
    I was extremely active prior to surgery with pain only when standing a lengthy period of time or lifting too much or raking leaves, etc. While no one wants pre surgery pain, it would make the decision easier. I even started a thread once "Is surgery a gamble?". I truly believe that not having surgery is a bigger gamble with a large curve. My ribs are now separated from my hips and i can take deeper breaths. Dr. Lenke would not recommend surgery if he didn't think your quality of life in later years would be better than without the surgery. You should have seen some of the people in Dr. Lenke's waiting room that delayed their surgeries. It was pretty sad. I am so thankful I had the surgery when I could still get a good correction. You are so fortunate to have Dr. Lenke as your surgeon. I will email you with my phone number.
    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/

  3. #33
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    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Evelyn,
    Coming from someone who had surgery at age 67 and with your curves and your age, all I can say is "Hello". To me it is a no brainer. I know fear can paralyze people, but please don't let it paralyze you. I can tell you, I wish some brilliant Doctor would have diagnosed me much sooner than at age 65.
    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.

  4. #34
    Join Date
    Oct 2011
    Location
    East Central FL
    Posts
    192
    [QUOTE=Pooka1;134314]I am glad you made a decision.

    I find the comment about a 45* compensatory T curve possibly compromising organs coming from an orthopedic surgeon to be mildly shocking. I still find it shocking even given the progression. As far as I know, you need to get north of 90* or more for some period to demonstrate any organ compromise in adults. On the contrary, collapsing a lung during some spinal surgeries does compromise lung function for a few years as far as I know. Not sure about the thoracic insufficiency issue in small children.

    It's much more believable to me, since we found from the doctors that our son's lung could not fully expand due to his spine prior to surgery, although he is a teen vs an adult.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  5. #35
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    In my case, I waited a year too long...

    I had some pain for almost 15 years prior to surgery, but it was manageable. I stayed very active, which I believe stabilized my back with strong core muscles. It allowed me to postpone surgery for many years. My surgeon was also of the mind set to wait until absolutely necessary. But eventually, by my late 30's, it progressed to the point where I had regular epidural injections for several years and was on anti-inflammatory meds and an occasional pain pill. (Which I was stubbornly resistant to, even though it really helped on the bad days.) The progression started getting worse and I knew the time for surgery was coming near. Still, I put it off "one more year". I shrank 3" in the next 6 months, and my curve really collapsed. At my age (49 last year at surgery) I was not as flexible as a younger person, so I only had a 50% correction. Which put me right back at where I was a year before surgery. If I had done it the year before, I would have had a much better correction.

    But with that being said, I am still doing awesome, even though I waited too long.

    It is such a hard decision. I agree about waiting as long as possible, but at some point, most of us eventually make the leap. I personally have never regretted it. It has made my life so much better. Even if you don't have any pain, you will no longer have that black cloud hanging over you, wondering if and when surgery is in the future. It seems to dominate your thoughts at times. You will no longer have to worry about your spine progressing or collapsing, and you can get on with your life! And you do heal faster if you are younger.

    As far as patients who don't have pain prior to surgery not being as happy with the outcomes-it makes total sense to me. In my opinion, I don't think the surgical outcome is necessarily very different in the two groups- only the perception is. I will gladly take my muscle tightness and the sensation of being fused any day to the feeling of sciatica or spasms I had prior to surgery. If someone doesn't have that pain before hand to compare to, they may not be as happy with the surgery, even though it may be the same outcome. If you are progressing, I would take being fused over the uncertainty of the future-it is usually only a matter of time. You never know when it will collapse like mine did. And you have to remember that the main goal of surgery is for prevention of further progression and deterioration, not to relieve pain. Eventually, most scoli patients do feel some pain, and hopefully you will be saved from experiencing painful sciatica, etc., in the future by being fused. I wouldn't wish that on anybody. Being fused truly isn't that bad. It hasn't stopped me from doing anything, and I am fused from T3 to S1 with pelvic fixation. It is a little rough at first, but by 6 months post op, I was climbing mountains, literally! I've been roller skating, and I was just released to go skiing at my one-year check up. I am a perpetual optimist, and even I was surprised at how few limitations I have with fusion. For me, it is so much better than the alternative. I can't imagine where I would be in another 10 years if we lived in a time where surgery wasn't an option... We are indeed fortunate.

    Good luck, and keep us posted. You have lots of support!
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  6. #36
    Join Date
    Feb 2011
    Location
    Lilburn, GA
    Posts
    201

    Advice

    Jenee, I love reading your advice. You are always so logical and reassuring.
    Thanks : ))
    50 years old!!!!!
    Wore Milwaulkee Brace 1976-77
    Original curve 36 degrees ( measured in the 70s)
    Advanced to 61 degrees 01/2011
    Surgery 07/11/2011
    Fused T1-L2 (curve now in the 20s!)

  7. #37
    Join Date
    Sep 2003
    Location
    Northern California
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    6,797
    Quote Originally Posted by jeneemohler View Post
    In my opinion, I don't think the surgical outcome is necessarily very different in the two groups- only the perception is.
    Absolutely.
    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.

  8. #38
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    May 2010
    Location
    Indianapolis area
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    Jess, Karen, Sally, Jenee & others,

    Thank you so much for your thoughtful and kind advice. It really is reassuring to hear from people who have been through this, as well as those who are just knowledgeable about the subject. I agree about the issue of pain perception. I have been trying to remember what it felt like for the month or two last year that I had bad sciatica. If I can hold on to that memory, it helps me better understand why this surgery is necessary!

    As you say, I should do this while I'm young(er), and not delay until I loose bone density, etc. Also, I have a good support system now, and who knows what will happen in the future. Thanks again! I'm sure I'll be checking back in the next weeks before the big day.

    Best,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  9. #39
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    Sep 2003
    Location
    NJ
    Posts
    1,291

    Curves compromise internal organs?

    My 80 deg thoracic curve caused permanent loss of lung tissue-it doesn't come back. My stomach was on its side(watermelon stomach my gastro called it). Gastric acid migrated up into my lower esophagus causing scarring and stricture--requiring dilitation --all this without much pain from the scoliosis.
    My heart was rotated-if EKG electrodes are placed as if I had a normal thorax erroneous EKG reading resulted. My ECHO cardiogram even shows(still) my descending aorta is not in the usual place but shifted to one side.

    Whichever way the spine goes so do the internal organs.
    Last edited by Karen Ocker; 01-23-2012 at 01:56 PM.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  10. #40
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    May 2010
    Location
    Indianapolis area
    Posts
    966

    Height gain?

    Okay, random question. I went for my pulmonary function test today and they measured my arm span at 5 ft. 3". My height is 5 foot 2". So, does that mean I will likely gain an inch of height with surgery? Or might I gain none because of disk and bone removal? Could I end up shorter?? :0 Also, how is it possible that I have been the same height for as long as I can remember, and yet my curve has ranged from 8 degrees (with brace in high school) to 80 degrees now? How is that physically possible??! If I have to go through this surgery, I would like for it to make me taller as a bonus! Bottom line: Is there any way to predict if/how much height you will gain?

    ,
    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  11. #41
    Join Date
    Mar 2010
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    2,755
    Quote Originally Posted by Confusedmom View Post
    Okay, random question. I went for my pulmonary function test today and they measured my arm span at 5 ft. 3". My height is 5 foot 2". So, does that mean I will likely gain an inch of height with surgery? Or might I gain none because of disk and bone removal? Could I end up shorter?? :0 Also, how is it possible that I have been the same height for as long as I can remember, and yet my curve has ranged from 8 degrees (with brace in high school) to 80 degrees now? How is that physically possible??! If I have to go through this surgery, I would like for it to make me taller as a bonus! Bottom line: Is there any way to predict if/how much height you will gain?

    ,
    Evelyn
    Evelyn,

    I've got an even better one. They are measuring me at 1/2 to 1" TALLER than I have been for the last 27 years and my scoliosis is progressing. Explain that one. I measured myself on the wall a couple of months ago so that I could watch for shrinkage due to progression and that also said I grew. My doctor is blowing it all off as "margin of error". It's a little upsetting because I have consistently been measured at 5'7" for a LONG time and by different doctors. So how can I progress and grow at the same time?

  12. #42
    Join Date
    May 2009
    Posts
    3,745
    hey Ev
    i thought most surgeons give an estimate....
    every surgeon i saw did...said things like
    "you'll probably gain one and a half to two inches in height..."

    so...have you asked the height question at your consult(s) ????

    jess

  13. #43
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    Jan 2008
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    NC
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    Quote Originally Posted by Confusedmom View Post
    Okay, random question. I went for my pulmonary function test today and they measured my arm span at 5 ft. 3". My height is 5 foot 2". So, does that mean I will likely gain an inch of height with surgery? Or might I gain none because of disk and bone removal? Could I end up shorter?? :0 Also, how is it possible that I have been the same height for as long as I can remember, and yet my curve has ranged from 8 degrees (with brace in high school) to 80 degrees now? How is that physically possible??! If I have to go through this surgery, I would like for it to make me taller as a bonus! Bottom line: Is there any way to predict if/how much height you will gain?

    ,
    Evelyn
    While you were growing, the growth compensated for hte curving so the height remained about the same.

    You might want to ask about the issue of your arm span being similar to your height because that can be an indicator of certain connective tissue disorders. If you have no other signs/symptoms then it probably means nothing.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #44
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    May 2010
    Location
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    Quote Originally Posted by Pooka1 View Post
    You might want to ask about the issue of your arm span being similar to your height because that can be an indicator of certain connective tissue disorders. If you have no other signs/symptoms then it probably means nothing.
    Huh? Pooka, I thought everyone was supposed to have the same arm span as height?

    Anyway, yes, I'll see what Dr. Lenke says at my pre-op. I will be surprised if I gain height.

    On another random note, did anyone else feel compelled to paint their entire house before surgery? I am in the process of getting mine done. I think it's a combination of not wanting to stare at a bad paint job during recovery and also trying to distract myself right now!

    Thanks for the responses on the height question.

    Evelyn
    age 44
    80* thoracolumbar; 40* thoracic
    Reduced to ~16* thoracolumbar; ~0* thoracic
    Surgery 3/14/12 with Dr. Lenke, T4 to S1 with pelvic fixation
    Not "confused" anymore, but don't know how to change my username.

  15. #45
    Join Date
    May 2009
    Posts
    3,745
    i don't understand...i thought most people with large curves gain
    height after surgery....height that they LOST from curving...
    i know i am down from 5'5" and a quarter....i always used to count that quarter...
    to under 5'4"...
    my sisters, without scoli, are both much taller than me...5' 8"

    jess

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