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

  1. #1
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    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
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    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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  3. #3
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    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
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    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 10:11 PM.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  5. #5
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    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

  6. #6
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    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

  7. #7
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    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

  8. #8
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    Janice,
    Welcome to the forum! My surgery was with Dr. Lenke 6 years ago when he was in St. Louis. (I was 60 when I had my surgery) When Dr. Lenke looked at my X-rays a year earlier, he said that I could wait a few years for the surgery since I wasn't in much pain, but recommended not to wait too long. He said that the results aren't always as good and the recovery could be a little tougher if I waited until I was 70. At the time, there was a year long wait to be scheduled for surgery with Dr. Lenke. I thought about it for a week and did a little research and called back to put my name on the waiting list. I was always one to exercise and play lots of sports, but I kicked it up a couple of notches during my year of waiting for surgery. I strictly obeyed the no twist, no lift, no bend restrictions for over 6 months after surgery and didn't attempt to play golf for a year. Much to my surprise, I was able to play fairly well and have even won several tournaments since my surgery. I used to play tennis and started playing pickle ball, too. I seldom think about lack of flexibility except when doing a few floor exercises at the Y. I have no problem getting up and down off of the floor. I don't think you'll have trouble playing with your grandchildren on the floor (or a low stool), but I wouldn't recommend lifting them. Maybe they can crawl in your lap. I was extremely care the first year with everything that I did. I could not stand more than a few minutes before surgery without pain, and I can truly stand for an hour or more at a party without any pain. It's also sooooo nice to have a straight back with no rib hump. People still tell me that they can't believe how much younger I look since I had surgery. I had no idea that my posture was as bad as it was!
    I have never regretted having surgery and am thankful for Dr. Lenke and his skills! Best of luck with your surgery if you go ahead with your March date.
    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/

  9. #9
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    Mar 2016
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    Hi Karen,
    Thank you for your input. Very encouraging. I notice a lot of similarity in our initial visits with Dr. Lenke. He also told me donít wait too long. Before 60 would be best ( I turn 60 in May) and he wouldnít do my surgery past 65. Too many risks and complications after that he said.

    Thatís great youíve gone ahead and won several golf tournaments. Golf is another sport Iíve been shying away from. Partly because itís uncomfortable for me but also due to lack of time. We want to play more when retired so thanks for giving me hope that itís possible.

    Iíve gone back and read a lot of older posts/threads on this forum and I am feeling more positive about doing this in March. I keep wanting to believe I can avoid this surgery and defy what the experts are telling me. Iíve seen 3 surgeons and another prominent surgeon has reviewed my x-rays, MRI & medical records and they all say the same thing Ė Donít wait too much longer! So, maybe itís time I listen.

    Itís very encouraging to hear positive flexibility stories! And how Iíd love to be rid of this rib hump! But I do resign myself to not picking up my grandkids anymore after surgery (probably shouldnít be doing it now anyway).

    Janice

  10. #10
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    Janice,
    It's really tough to make the decision to have surgery, especially when your life style has not been effected by your scoliosis. I am truly glad I didn't wait any longer, but everyone has their own reasons for choosing the right time. I just now looked on the internet to see Dr. Lenke's new web site since he has moved to NYC. I haven't looked at his web site in years, but before my surgery I looked at before and after X-rays and read testimonials often. I was so surprised to just now see that Dr. Lenke has two letters from me on his new web site. If you go to "Patient Experiences"-"Expressions of Gratitude", my letters are the third and forth ones in the top row. I enclosed a picture of winning the Ladies' Club Championship following surgery which he included. Everyone is not guaranteed perfect results, but I think your odds are more favorable when you have Dr. Lenke or one of the other top scoliosis surgeons in the country.
    Karen
    Last edited by golfnut; 12-20-2016 at 08:15 PM.
    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/

  11. #11
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    May 2008
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    reno,nevada
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    Karen

    Thatís great seeing your testimonials on Dr Lenkeís web site.

    Remember when I drove a few balls for you when you were in your recovery? When I reported that it felt great? I noticed more stability through the swing.....

    What do you think, did scoliosis surgery improve your game?

    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

  12. #12
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,690

    Reply to Ed's question-sorry for hacking this thread!

    Ed,
    I definitely remember the video and can't tell you how much it meant to me. I have a big smile on my face as I'm typing this. Even though Dr. Lenke told me I'd be able to play golf after a year ( I didn't know if his definition was the same as mine), I couldn't imagine that it would be possible to make a proper golf swing and hit the ball further than 80 yards with two long rods in my back and the inability to twist. Your video gave me hope! My golf game was never better than before surgery, but it was good enough to play at a decent level. I always want to break 80, but the past year I often was in the low 80's instead-age could be a factor! My husband tells me it's my brain that's interfering! When I won the club championship again at our local club in 2012 after not playing for over a year, the club president gave me the plaque and said, "She's back!" I won again this year for the 29th time. I am not being boastful, but just want people to know that life for me returned to normal after surgery-golfing, tap dancing, exercise classes, playing Frisbee with my dog, bike riding, etc.

    I apologize for hacking this thread!
    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/

  13. #13
    Join Date
    Aug 2011
    Location
    Indiana
    Posts
    104

    Best shape for surgery

    Hi Janice,
    I haven't been on this forum for awhile. I am fused from T3-L3 so I have much more flexibility than those fused all of the way to the sacrum. With that being said though, sitting on the floor for an extended time is something that is not comfortable but I will do it so that I can participate in some of my grandkids activities. Prior to my surgery, I was very active even though my curve was progressing. I decided to have my surgery when I did because I knew that I was going into it at the best physical shape that I would ever be. That certainly helped me during my recovery. Now that I am 5+ years post-op, I still play somewhat competitive tennis at the age of 54 for a couple times a week. I would play more but I have arthritis in my hand and thumb. My back could handle it....the other body parts are giving out! Best of luck to you as you make your decision.
    Donna
    Female - 49 yrs old at surgery
    Surgery 5/5/11 - Dr. Bridwell, St. Louis
    Fused T3-L3
    60 degree thoracic curve corrected to 30 degrees
    Tennis player & returning to the courts!
    http://s1050.photobucket.com/profile/walkingmom1/index

  14. #14
    Join Date
    Mar 2016
    Posts
    16
    Hi Donna
    Impressive video of you playing tennis. Again, more hope I can continue an active lifestyle after surgery. Of course, there are no guarantees but I feel I'm in better shape now for the surgery than I was a year ago. The Stott Pilates I've been doing for over a year has made a noticeable difference in my core strength. This past Thanksgiving with all the prep, cooking, cleaning, dishes to do, etc. was easier for me than last year. Of course, I've also learned to pace myself better!
    Thanks for taking the time to provide your thoughts. It's a good reminder for me to not slack over the winter and continue to make myself as strong as I can before March!
    Janice

  15. #15
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    May 2008
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    reno,nevada
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    Quote Originally Posted by golfnut View Post
    My golf game was never better than before surgery, but it was good enough to play at a decent level.
    Karen, thanks for answering....itís the same with my skiing. But still amazing that we can still do quite well at our sports, including Donna on tennis. Tennis can be a brutal sport, thatís for sure.

    Janice, we have 3 different sports covered now on your thread! (smiley face) Karen on Golf, Donna on Tennis, and myself on Skiing.

    Being in good shape helps with surgery....

    I hope Linda is reading, I tried to send you a PM but your box is full.

    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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