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Thread: Surgery Scheduled with Dr. Lenke in March - Not Sure the Timing is Right

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  1. #1
    Join Date
    Mar 2016
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    16

    Post Surgery Scheduled with Dr. Lenke in March - Not Sure the Timing is Right

    Hi ĖLike many before, I have been reading and learning so much from all of you for the last year or so. Currently, I am scheduled for surgery in March í17 with Dr. Lenke but debating if the timing is right. I am a 59 year old female diagnosed with scoliosis in the 8th grade. Wore a Milwaukee brace 23 hours a day for 14 months. I have some old x-ray films which indicate a curve of 30 degrees, progressing to 60 degrees by age 40. I have always lead an active life with various activities - jogging, swimming, skiing, tennis, biking, golf, volleyball.

    Fast forward into my 50ís when I started experiencing more noticeable discomfort and pain doing housework, gardening, exercising, etc. The pain was enough to make me stop and lay down for a bit. I saw a physiatrist at a local neurospine center, had some x-rays taken and found out I was at about an 82 degree right thoracolumbar curve and had lost 2 inches in height. Wasnít even considering surgery at the time since I was doing quite well but getting concerned. I continued on my way and did some PT for core strengthening, researched and hooked up with a Schroth specialist for a few years and continued to remain active. I walk as much as I can and do a quick paced 4 miles without too much discomfort. Walking is actually less painful than standing still for a period of time. I continue to swim, do some biking, kayaking, lots of stretching and am now working with a Stott Pilates instructor on core strengthening. Just started playing pickle ball, too.

    I experience more bouts of pain these days but the magnitude is definitely related to how much I do. I feel lucky in that I donít have constant daily debilitating pain. On a daily basis itís more a constant feeling of being uncomfortable which gets worse as the day progresses.

    But due to the continuing progression of my curve(s) - it seems surgery is in my future and Iíve been investigating my options. Fortunately, I have access to and have been seen by Dr. Glazer and Dr. Rand in Boston and last January by Dr. Lenke in NYC. I live in southern NH so Boston and NYC are quite accessible. They all agree I will need surgery someday as my curves, pain and quality of life will continue to worsen. Within 1-5 years I was told in Boston. In NYC, I was advised before age 60 is best, 60-65 is good, too. The timing is really up to me. Dr. Lenke said I would be 3-4 inches taller post-op.

    As reported by Dr. Lenke, I now have a right thoracolumbar curve measured at around 90 degrees with a 65 degree thoracic curve above and 35 degree lumbosacral curve below. Coronal balance is off 25cm to the right. Sagittal plane shows 33 degrees of thoracic kyphosis, 67 degrees of lumbar lordosis with an incidence of 84, tilt of 30 degrees. Sagittal balance is positive by 1 cm. Rotatory subluxation developing in both L2-3 and L3-4. MRI scan shows no stenosis in the lumbosacral region. Definitely looks a little osteopenic in the spine (subsequently confirmed by a bone density scan).

    The size of the curves frighten me and so does how compressed my torso looks on a standing x-ray. Iíve read here and elsewhere that adult spinal fusion surgery is about pain and not progression. I would be fused T-3 to sacrum. I am still functioning well and some days not sure the level of the discomfort or pain I experience justifies a surgery of this extent at this time. I am fearful of doing the surgery in March and giving up my current level of activity, loosing flexibility and all the many other things I could be left to deal with. But if I wait much longer and become less active there is a downside to that, too.

    Has anyone had recent surgery with Dr Lenke at the Spine Hospital in NYC? I realize Dr Lenke is one of the bestÖI just wonder how the hospital experience is there.

    How do you deal with the inflexibility of being fused T3-sacrum? Loss of flexibility is Dr Rand's biggest concern for me in regard to what my ďlevel of function would be afterwards compared to her current level of functioning, which is quite goodĒ. Is the lack of flexibility something you just get used to? Would I still be able to get down on the floor and play with my grandkids?

    Anyway, thanks for taking the time to read this. I would love to hear your thoughts!!
    Janice

  2. #2
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    6,797
    Quote Originally Posted by JaniceD View Post

    How do you deal with the inflexibility of being fused T3-sacrum? Loss of flexibility is Dr Rand's biggest concern for me in regard to what my ďlevel of function would be afterwards compared to her current level of functioning, which is quite goodĒ. Is the lack of flexibility something you just get used to? Would I still be able to get down on the floor and play with my grandkids?
    Hi Janice...

    I'm fused T4-Sacrum and am pretty unhappy with my lack of flexibility. I'm almost 6 years post-op. I cannot easily get down to the floor and back up again. It's more of a problem for me because I've broken pieces off of both kneecaps (so it's really uncomfortable to have my knees on the floor). There's not a day that goes by that I don't wish I wasn't so inflexible. With that said, I'd still make the same decision to have surgery. My leg pain was pretty bad. I couldn't walk more than half a block without having to sit down.

    The amount of flexibility one loses when fused to the sacrum is based on several things. Most impactful are 1) length of fusion (long fusion = T3 or T4 to the Sacrum vs short fusion = T10 or T11 to the Sacrum). 2) How flexible you are prior to surgery. And 3, weight (the thinner the better). Age may also play a role.

    Hope that helps.

    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.

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,551
    Hi Janice...

    I donít have a problem with inflexibility....But Iím one of the lucky ones. My surgeon takes no credit and just shakes his head in disbelief. He did mention that my will power and attitude was extremely powerful, and that had a positive effect on things. It takes a lot of commitment as a scoli, before surgery, which you have done, and also after surgery.....

    Your question about getting down on the floor is a tough one.....This is not an easy thing. I can do it, but not for long. Lifting children is difficult. I have permission to lift 100# and have lifted probably 75# as a test, but lifting is not a good thing for us, especially at our age. One thing that scoliosis surgery has taught me is patience, and also switching gears and slowing down.

    I am a life long skier. The lady that taught me to ski at age 3 is now 94 and is still skiing. Of course she is Swiss, and lives at Gunstock Ski area. She and her husband are still very active as always, and this kind of rubbed off on me.....She would pick us up by the back of the jacket, gear and all, and carry us around like this. She would aim us downhill and yell ďGoĒ. (smiley face) My New Hampshire trivia for tonight.

    There are a lot of decision threads here.....we have been discussing this topic for many years....

    When I think of ď90Ē I think of Rita, and Pilar. Both members from years ago who had surgeries by Dr Lenke and Pashman. I really wish they would stop by and say hi once in a while....

    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

  4. #4
    Join Date
    Feb 2013
    Posts
    45
    Hi Janice - I had surgery 7/14 and am fused T9-sacrum. Like you, I was terrified such a fusion would be terribly debilitating. Much to my surprise I have recovered amazing flexibility. I have zero problem getting down and up off the floor and in fact, I exercise (planks, etc) daily. Yes, I have to modify some movements but overall it's not much of a problem. Additionally, whereas I could not walk more than a block without varying degrees of pain I can now walk miles and miles completely pain free. I really believe going into this surgery in fairly good physical shape is vital and key to a good recovery. Of course, there are no crystal balls and in the back of my mind is always the knowledge that set backs are always a real possibility BUT for now at least, I am very pleased with the results.

    RisŽ

  5. #5
    Join Date
    Dec 2006
    Location
    North Carolina
    Posts
    6
    I was fused t4-s by Dr Lenke 2 1/2 years ago and am very pleased. I was 45 and very active (played tennis 5 days a week, etc). I had a lower 70 curve and Thorac 65 curve. I still play tennis, walk, jog, weight train and get on and off the floor pretty easily. There is nothing I cannot do and although I may modify certian things, what I have gained far outweighs the little flexibility I had. I loved gaining 2 inches in height and having a nice straight back. Robyn
    RMT
    45 yrs old at time of surgery
    fused t4-s June 2014, Dr Lenke
    pre surgery curves 60 upper, 70 lower
    after surgery--pretty darn straight

  6. #6
    Join Date
    Mar 2016
    Posts
    16
    Thank you all for taking the time to reply and I appreciate all your thoughts.

    I think flexibility is so much on my mind because I am still pretty active and thereís not much I donít still do except jogging. But with whatever Iím doing eventually I have to give into pain and take a break. I feel very fortunate that I donít experience such pain where I canít get out and walk.

    Which leads to another one of my daily mental debates. With the lack of debilitating pain Ė Iím afraid the March surgery is too soon. Am I jumping the gun? I have bad enough curves, progression and discomfort to justify the surgery but not the daily debilitating pain.

    RMT Ė I wonder if you were in the same positon Iím in since you played tennis 5 days a week before surgery. Was it pain that drove your surgery decision or other factors? Iíd be curious to know.

    Ed - Enjoyed your Gunstock story! 94 and still skiing - good for her! We used to ski Gunstock when our boys were younger. Good place to learn. Some of our best family memories are from our many days on the slopes in NH/Vermont. Great times!

    Thanks again,
    Janice

  7. #7
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Janice welcome. I'm almost 7 years Post Spinal Fusion. I had my surgery done while still in high school. I never had problems with inflexibility as I have always been really flexible. I can't really answer your question about lifing children. I can get on the floor easily but getting off the floor it not easy
    Last edited by kennedy; 12-13-2016 at 11:11 PM.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

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