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  • Taking the leap in January

    Hi everyone,

    I am fairly new to the forum and have discovered that there are so many scoli patients out there, that I never really knew existed. It's wonderful to know that there are so many people to communicate with. We discovered my scoliosis when I was around 11. The only thing that was done for me was a number of exercises and a lift in my left shoe to help bring my left hip up to the same height as my right hip.

    Now that I am entering my senior years, I noticed that my curve is getting worse. After two sessions of pain down my leg and physical therapy, I decided that it was time to see a scoliosis doctor in Boston. How surprised he was that with an 80 degree thorcolumbar curve, I was not in constant pain. He also told me that I don't have to have the surgery, BUT, it is very possible that as the curve gets worse I could end up with so much leg pain that I will be bed ridden. Well, I am not that physically active, but I want to be able to go for a walk, play with my granddaughters, make an attempt at being somewhat of a golfer. We also discovered that L5 has a fracture, so I know that a fusion from L5 to sacrum is in the plan. Sweeping the floor, ironing, gardening all create pain within minutes, but I do it anyway.

    The doctor's plan is to go through my abdomen to put in spacers. The next day remove a rib to use during surgery for the fusion.

    I have to go for my second MRI within a month of surgery, which we are planning in January. I have been reading so many threads trying to get as much information as I possibly can. Everything I do, I wonder how will I do this once I am fused. How do I put on a pair of socks, will I be able to look down as I go down a flight of stairs, how long will it take me before I can wash and dry my own hair and take a shower. I am petrified of the surgery and the recovery. What keeps me going is all the stories of people who have a life after surgery.

    I would love to hear how people managed during recovery.

    Libby

  • #2
    Good luck with your surgery
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

    Comment


    • #3
      Libby,

      How old are you, and which vertebrae will be fused? Also, which doctor are you seeing?

      You will want to see an SRS surgeon, who is specifically trained in scoliosis surgery. If I remember correctly, there is a Dr. Rand in Boston.

      Recovery varies a lot. For me, I still am very stiff and using assistive devices, such as a thing that helps you put socks on, and of course grabbers. I am 40 and was fused T4 to sacrum 8 months ago. I also had an 80-degree thoracolumbar curve with relatively little pain. I chose to have the surgery because all the doctors I consulted with said it would eventually cause me debilitating pain--so have the surgery while you're younger and in better shape. I am doing pretty well now, but the pain is not entirely gone. It is a big, difficult decision. In general I would tell people to avoid surgery if at all possible. If your curve is progressing rapidly (mine was) or the pain is debilitating, then go for it. But there are a lot if risks and a significant number of people have difficult complications. That's why it's essential to go to a top-notch surgeon.

      Best wishes,
      Evelyn
      age 48
      80* thoracolumbar; 40* thoracic
      Reduced to ~16* thoracolumbar; ~0* thoracic
      Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
      Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
      Not "confused" anymore, but don't know how to change my username.

      Comment


      • #4
        Libby,
        I was fused T4 to sacrum at age 60. You can look at my signature for a video of my first week of golf after surgery, as well as before and after pictures of my back and a picture of me tap dancing. There is definitely a life after surgery! Dr. Lenke uses a "reach around" approach to put in spacers so that there is only a posterior incision. It might be something for your to inquire about.
        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/

        Comment


        • #5
          I'm scheduled with Dr Rand for surgery on Feb 5th. I have a very large lumbar curve (over 90) and I feel more comfortable with Dr Rand's expertise. Also, I think New England Baptist is the better hospital - while I did consult with Dr. Glazer and the Beth Israel is very good obviously, I like how NE Baptist caters to orthopedic patients. They give free classes for patients - I went to the spine fusion class, it's taught by the nurses and PTs who take care of the patients immediately following surgery, and it's extremely informative. They also seem to be very comfortable dealing with elderly patients - I have always been the youngest one there by easily 30 years (I'm in my late 30s). That being said, I've been told the Baptist is not the place to go if you have other serious comorbidities because they are not the best in dealing with major complications.

          I have been mostly a lurker in the forum for about the last year as I made my decision and continued to do my research - as many others have said, thanks to the collective group on the forum for being such a phenomenal resource.

          Comment


          • #6
            Dr. Rand did my fusion, but I know that Dr. Glazer is also an excellent SRS Doctor in Boston as well as Dr. Wood at the Mass General. I loved Dr. Rand and the Baptist Hospital and was never afraid to be alone after my surgery. There were two nasty winter storms when I was in the hospital and the rehab hospital where my hubby couldn't make it in to Boston. The care was excellent and the food was reasonable. Good luck to all you Boston area ladies.
            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.

            Comment


            • #7
              Originally posted by Confusedmom View Post
              Libby,

              How old are you, and which vertebrae will be fused? Also, which doctor are you seeing?

              You will want to see an SRS surgeon, who is specifically trained in scoliosis surgery. If I remember correctly, there is a Dr. Rand in Boston.

              Recovery varies a lot. For me, I still am very stiff and using assistive devices, such as a thing that helps you put socks on, and of course grabbers. I am 40 and was fused T4 to sacrum 8 months ago. I also had an 80-degree thoracolumbar curve with relatively little pain. I chose to have the surgery because all the doctors I consulted with said it would eventually cause me debilitating pain--so have the surgery while you're younger and in better shape. I am doing pretty well now, but the pain is not entirely gone. It is a big, difficult decision. In general I would tell people to avoid surgery if at all possible. If your curve is progressing rapidly (mine was) or the pain is debilitating, then go for it. But there are a lot if risks and a significant number of people have difficult complications. That's why it's essential to go to a top-notch surgeon.

              Best wishes,
              Evelyn


              Hi Evelyn,

              I am close to 63, so I know that that is a more difficult surgery/recovery. My Dr. is Dr. Glazer, and yes he is as SRS surgeon. I do not have the results yet, but I have a feeling my fusion will be from T5 to sacrum. Were your hips uneven? Mine are. I have to shorten one leg of my pants so they are even.

              Comment


              • #8
                I always had to shorten one pant leg, as well. For years, I was self conscious about my uneven hips. Fortunately, low rise pants became popular instead of the belt at the waistline, but by then my rib hump had become more prominent. It is so nice to feel straight and tall with no rib hump!
                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/

                Comment


                • #9
                  Originally posted by Wish2bstraight View Post
                  I wonder how will I do this once I am fused. How do I put on a pair of socks, will I be able to look down as I go down a flight of stairs, how long will it take me before I can wash and dry my own hair and take a shower.
                  For putting on socks, they will supply a sock installer at the hospital. It’s a device where you hang the sock over your toe, and pull up with straps. It works ok, I used mine for around 8 months. After that time, you will learn how to put socks on without the installer. They don’t want you bending and twisting for many months while you heal. Sandals worn without socks are easiest. You generally don’t bother with socks unless you leave the house....

                  I never had any problems with stairs. None whatsoever. They will get you on the stairs in the hospital.

                  I washed my hair by myself in the hospital after 8 days, and I had a broken shoulder at the time from a ski crash....If both were broken, that might have presented a little challenge.....Some of the ladies here do have problems with washing hair and lifting arms, you will see posts on this subject every now and then. That first shower is absolute heaven and I asked of I could stay in there for an hour and they said ok. I used so much water, I lowered Lake Tahoe about an inch. (smiley face)

                  Most or all will vouch that the first 4-6 weeks is the hardest. The first thing you will notice is that its very hard to get comfortable. For those in serious pain, every minute is what I call a “survival mode” where all your thoughts are centered on pain and trying to get into a comfortable position. Sleep is also difficult, and we end up sleeping like cats for the longest time.....

                  I would say I improved about 10% per month. At 1 year, I was 90% healed, and it took another year for the fine tuning and fatigue to pass. I sure miss those daily naps! It’s a multi year recovery for most, but the young kids heal surprisingly fast.

                  Walking is the standard therapy for us. It plays an extremely important part since we have to worry about blood clots in the legs. Blood hardly circulates down there unless you walk, and clots can travel up to the lungs and really create problems. Opoid usage WILL cause constipation, and walking promotes peristalsis. Walking also help reduce edema in the legs which is so common after anterior surgeries.
                  http://en.wikipedia.org/wiki/Peristalsis

                  Basically, we need to keep things moving. Not marathon walks, but short walks many times each day. Marathon walks will just tax the delicate soft tissues that have been altered and moved in your surgery.

                  Most of us do well with our recoveries. Many that do well move on and discontinue posting....and of course we miss them and really love hearing from them from time to time...
                  Ed
                  49 yr old male, now 63, the new 64...
                  Pre surgery curves T70,L70
                  ALIF/PSA 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

                  Comment


                  • #10
                    Libby,
                    Glad to hear you have a top surgeon. Yes, my hips were uneven and all my dress clothes are hemmed unevenly. Also the rib hump so backs and shoulders are altered differently. I haven't put on most things yet. It will be interesting to see how they fit now that I'm straighter. My spine is almost totally straight now, but I still have some rib hump, though greatly reduced. Overall I am very pleased with the cosmetic effects, though I would never have this surgery for that reason (I know you're not, either).

                    Best,
                    Evelyn
                    age 48
                    80* thoracolumbar; 40* thoracic
                    Reduced to ~16* thoracolumbar; ~0* thoracic
                    Surgery 3/14/12 with Dr. Lenke in St. Louis, T4 to S1 with pelvic fixation
                    Broken rods 12/1/19; scheduled for revision fusion L1-L3-4 with Dr. Lenke 2/4/2020
                    Not "confused" anymore, but don't know how to change my username.

                    Comment


                    • #11
                      Thanks one and all for your answers to my questions.. I lost sleep last night for the first time and am becoming very nervous. I guess that is part of the process. Thedoctor's office sent my packet out in the mail yesterday, so I am hoping to understand exactly what he is planning to do in a couple of days. So now to my next question, which I know the answer will be different for everyone. At what point in time do you feel we'll enough to be left alone in the house for a few hours. Asking because I also have to prepare my husband to understand what I will be like and the time off from work that he will need to take.

                      Comment


                      • #12
                        I was alone during the day from when I came home. My partner didn't take a single day off work and didn't need to. He left food ready for me, all I had to do was make coffee. I am a solitary sort of person so it worked fine. I left dirty clothes on the floor where I took them off and he picked them up and washed them. I dressed slowly and carefully. I showered when he was home and nearby. Initially he walked with me, so we did that when he came home. Later, when I was walking longer distances, a friend came over during the day and walked with me. But I could have done it alone, it was other people who thought I should not.

                        Having said this, many here do it completely alone. It's doable, but it is nice to have the tricky things done for you. And having said that, there are some who need a lot more help than me, because as you say, we are all different.

                        If I'd been alone, there are some things I would have simply not done and maybe paid someone to come in and do for me. Like floors and laundry. Because in those early weeks, we don't want to take any chances. I have a friend who had surgery with my surgeon earlier this year and she's a cleaning fanatic and it drove her nuts seeing things needing doing and took chances. Not me!
                        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

                        Comment


                        • #13
                          Rehab

                          Originally posted by loves to skate View Post
                          Dr. Rand did my fusion, but I know that Dr. Glazer is also an excellent SRS Doctor in Boston as well as Dr. Wood at the Mass General. I loved Dr. Rand and the Baptist Hospital and was never afraid to be alone after my surgery. There were two nasty winter storms when I was in the hospital and the rehab hospital where my hubby couldn't make it in to Boston. The care was excellent and the food was reasonable. Good luck to all you Boston area ladies.
                          Sally
                          Sally, what rehab did you go to? We're you pleased with the therapists?

                          Comment


                          • #14
                            Hey, Mr. Popular Titanium Ed,
                            I tried to send you a PM and your mailbox is full.
                            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/

                            Comment


                            • #15
                              Karen

                              Use my e-mail. This PM system needs major surgery.....

                              titaniumed@hotmail.com

                              Ed
                              49 yr old male, now 63, the new 64...
                              Pre surgery curves T70,L70
                              ALIF/PSA 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

                              Comment

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