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Thread: Surgery scheduled - sooooo many concerns

  1. #16
    Join Date
    Jun 2006
    Location
    Texas
    Posts
    137

    welcome

    hi Rise, what a curve you have! I share your hobby of beach combing - it's the one "fun" activity I try to do - but like you said, it causes pain, bending over to look for and pick up shells. i am planning surgery for this year too, I'm 56 yrs and I want to stabilize the curves so that I can walk! welcome and thanks for posting- you're going to one of the best surgeons! God bless you~ Jamie in TX
    57 years old.
    thoracic curve 68 degrees
    lumbar-sacral curve +/- 41 degrees
    Cspine C3- C7 fusion Nov. 2011 <done! success!!>, then scoli surgery T2- L4 or maybe to sacrum.
    Discogram/ myelogram pending. Surgery to be scheduled, maybe fall 2015. <scared but I know this is not going to get better>
    THANKS TO EVERYONE FOR SHARING EXPERIENCES AND KNOWLEDGE!

  2. #17
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    my story is similar to yours. I was braced as a teenager and considered a success at that time; however, as I aged both curves progressed. I had surgery at age 46, and it was the best thing I could have done. I had a few bumps along the way, but overall my recovery was smooth and I'm released from my surgeon unless I have any further problems. I also was scared to death of the surgery, and honestly the anticipation/fear was worse than reality. Not to say that it wasn't very VERY tough, but they did a good job on managing my pain. Now I rarely think of my back any more; sometimes I even forget that I have 2 rods in my spine.

    I see you're having surgery in NY; where are you located? I'm in NJ.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  3. #18
    Join Date
    Jan 2009
    Location
    Ames, Iowa
    Posts
    1,250
    Rise--
    Welcome to you--another new member since last I checked in. You do have quite a curve to which I can relate. You will get lots of good info from this bunch as you have already found out. Good luck. Janet
    Janet

    61 years old--57 for surgery

    Diagnosed in 1965 at age of 13--no brace
    Thoracic Curve: 96 degrees to 35 degrees
    Lumbar Curve: 63 degrees to 5 degrees
    Surgery with Dr. Lenke in St. Louis--March 30, 2009
    T-2 to Pelvis, and hopefully all posterior procedure.

    All was posterior along with 2 cages and 6 osteotomies.

  4. #19
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    571
    Hi Rise,

    You said that you workout, garden, clean, travel and I assume you're concerned about not being able to do those things after the surgery. I am pretty sure you'd be able to do all of those things if you want. I didn't have a lot of pain, it depended on what I did. I could sit in a comfortable chair for many hours, but I could not stand still for more than 5 minutes. I was in pain after 5-10 min of walking and needed to sit down and rest after 30 min of walking. Now I can walk for hours without any back pain.

    Travel was the last drop that pushed me towards the surgery. We went to NYC in May 2012 and I was in so much pain from walking! We could not see all the things I wanted to see and it really affected me... I pushed through the pain, would come back to the hotel and just collapse. That vacation was the last drop that I really needed. I am looking forward to our upcoming vacation in Vancouver soon!

    I work out, I never gardened before the surgery and don't have any interest in doing it now, so can't comment. I always cleaned the house myself because I am cheap and picky :-) and didn't want to spend money on a cleaning service. I hired cleaners right before the surgery because there is no way you'd be able to clean your house for a while. I though I'd keep my cleaning people for a year and than go back to doing it myself. Well, I am perfectly capable of cleaning a house now, but I don't want to anymore... I got spoiled. It's so nice to come to a clean house on Fridays after work and don't clean a toilet on Saturday! My cleaners come every other week and I do a little spot cleaning during a week, but let them do the heavy stuff.

    And talking about a cosmetic benefit is kinda lame because nobody goes into this huge surgery just to look better, but you'd be so happy with the way you look! I still can't believe it! After being crooked for so many years, being able to wear anything I want and look good is mind blowing! And seeing other people faces when they see you for the first time after the surgery is priceless :-)
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  5. #20
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,163
    Hi Rise,

    I was fused T8-sacrum/pelvis three years ago at the age of 44. I too was very worried about my loss of mobility. While I will never love being fused, I am not so terribly restricted in my mobility now that I am healed. I am an active mother of two school-aged kids, work full time in a physically demanding job as a CV nurse, am able to do house work, take care of my flock of 48 chickens, hike, swim regularly, etc. There are some motions that I can not do, but I have found other ways to do the things I want to. My back is essentially pain-free and I do not take any medications regularly, even Tylenol.

    There are definitely some motions I can't do…it is difficult to get things out of low cabinets, so I have to get on my hands and knees for that (or make my kids get what I'm looking for). Stooping isn't really possible. I can now clip my own toenails but I was difficult until at least 18 months post-op. Pedicures solve that problem. I do have a housecleaner who comes once every two weeks which is great, but I am able to vacuum, mop, etc.

    Many motions and activities will be put off limits by your surgeon for a certain number of months after surgery. These restrictions are on bending, lifting and twisting. Many people are restricted from these things for about 6 months. I didn't do any of these for a year after my revision, and didn't fully allow myself to test my limits until after 2 years post-op. I have made significant improvements in mobility since then, and have gotten a lot of deep-tissue massages to help loosen some of the tight scar tissue I have in my back.

    Please feel free to contact me with any questions you may have. I will send you a private message with my e-mail in it.
    Last edited by leahdragonfly; 05-17-2014 at 10:33 AM.
    Gayle, age 50
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    2010 VBS Dr Luhmann Shriners St Louis
    2017 curves stable/skeletely mature

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #21
    Join Date
    Feb 2013
    Posts
    45

    Surgery fast approaching

    I'm beginning countdown mode for my surgery with Dr. Boachie. Still grappling with whether or not to donate my own blood but now have another concern to focus on. I'm curious what the opinion of those who have walked this road before is of going home vs. going to a rehab facility for a bit. As usual I can see pros and cons for either scenario. Any insights would be appreciated.

  7. #22
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,262
    I have always gone to a rehab after any of my surgeries.I like having PT twice a day in the beginning. Everyone is different. What is your home setup like and will someone be home with 24 hours a day for the first couple of days?
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  8. #23
    Join Date
    Feb 2013
    Posts
    45
    Quote Originally Posted by mabeckoff View Post
    I have always gone to a rehab after any of my surgeries.I like having PT twice a day in the beginning. Everyone is different. What is your home setup like and will someone be home with 24 hours a day for the first couple of days?
    Thanks Melissa. My husband will be home for the first week or so. The kicker is
    I have 3 dogs who demand quite a bit of attention and keeping them at bay in the beginning may be a challenge.

    Also, I'm concerned about showering and washing my hair in the beginning.

  9. #24
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    571
    I went straight home because I had someone with me around the clock during the first month. My husband took a month of PFML, paid family medical leave, and he was paid 100%. If I remember correctly, the state paid 67% of his salary and his company paid the remaining 33%. Have your husband check with his employer if this option is a possibility. My parents also live 10 minutes away and they spent a lot of time with me too.

    I remember the hospital saying that you need someone with you 24/7 for a week after discharge. If you can have someone with you at home around the clock for at least a week (and I would say at least 2-3 weeks), I would recommend going home. If not, than rehab is a better option.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  10. #25
    Join Date
    Apr 2012
    Location
    San Jose, CA
    Posts
    571
    Quote Originally Posted by Rise View Post
    Thanks Melissa. My husband will be home for the first week or so. The kicker is
    I have 3 dogs who demand quite a bit of attention and keeping them at bay in the beginning may be a challenge.

    Also, I'm concerned about showering and washing my hair in the beginning.
    I was not allowed to take a shower for about 10 or 14 days or something like that, until stitches dry out. It's all foggy now, but may be someone told us it's OK to cover your stitches with some plastic and take a shower, but make sure water doesn't get in. Can't remember... anyway, I decided not to take chances and rather be stinky for 10 days than sorry. You can take a sponge bath, but that's about it. I bought those dry shampoo shower caps and they only made my hair feel greasier. The first shower felt like heaven! Buy a shower chair for home because you'd be weak and dizzy. When I was finally allowed to take a shower, my husband would get in the shower with me and help me wash.
    I am stronger than scoliosis, and won't let it rule my life!
    45 years old - diagnosed at age 7
    A/P surgery on March 5/7, 2013 - UCSF

  11. #26
    Join Date
    Apr 2010
    Location
    Waterloo, IL
    Posts
    1,707
    Rise,
    Dr. Lenke did not want me to donate my own blood and felt that the blood bank was safe.

    I was willing to go to rehab following surgery because I knew that my husband was worried about being able to take care of me. As it turned out, I did not have a choice. I did not qualify to go to a rehab. center because I was able to do various things, such as, use the sock aide, walk up and down 3 steps, and a few other requirements which I don't remember. I imagine insurance companies prefer that one is sent home from the hospital if at all possible. I was pretty self-motivated to walk as much as possible in the house (snow and ice outside in January) so it turned out fine , but I think a good rehabilitation center could be a positive thing if insurance will pay.
    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/

  12. #27
    Join Date
    May 2009
    Posts
    3,745
    Rise, can you hire someone to help take care of dogs, walk them, etc....
    so your husband can concentrate on taking care of you...????

    best of luck...
    jess...and Sparky, the wonder puppy

  13. #28
    Join Date
    Sep 2003
    Location
    Northern California
    Posts
    7,104
    Hi Rise...

    I don't know how much time you have before surgery, but would it be possible to get the dogs trained? If a dog jumps on you and knocks you down, or if a dog walks in front of you and trips you and you fall down, you could be hurt badly. I also like Jess' idea of hiring someone to walk the dogs. Tired dogs are a lot less likely to need attention.

    After my surgeries 3 years ago, I went home by myself and was OK. We're all different, so my advice would be to go with the flow. If you still need a lot of help, HSS will send you to rehab. If you can avoid rehab, you'll reduce your risk of infection considerably. I think that's the only big downside to rehab.

    Regards,
    Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  14. #29
    Join Date
    Feb 2014
    Posts
    26
    Hi Rise,

    I'm new to the forum but currently looking into surgery. I met with a surgeon last week and he told me that a week or two in rehab is worth a month of recovery at home. When I get to the point of having surgery I will try to set up time in rehab and if I change my mind...I'll go home. As my doctor said, they can't keep you there, it's up to you if you find you want to go home. I'm 55 years old so obviously I'm not a Medicare patient, which I believe would be a different story as they have their own set of rules for rehab after a hospital stay.

    Best of luck to you.

    Diane

  15. #30
    Join Date
    Oct 2007
    Location
    Indiana
    Posts
    1,978
    So many different thoughts from people and their doctors! Mine really felt I would be better off at home if at all possible. I was in the hospital for 11 days though, and my husband's job was just 1/4 mile from our house and he could be with me for the first few days and then stop by all the time after that to check on me and fix me lunch, etc. We were actually about to see about rehab when I was in the hospital but then started getting better, and Dr. H was very glad about it. I was more comfortable at home, PT and OT from a local hospital came to check on me a few times (OT came to make sure our house was ok for me to maneuver around and do things in, bathroom ok, etc.), PT just made sure I was logrolling ok and other things and had me use the stretchy bands for my arms and hold the counter and go up and down for my legs. Home was nice. It just depends on what you need.
    67 and plugging along...
    2007 52 w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

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