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  • Dr. Lenke "customers?"

    I originally posted in the revision surgery section, since I am now heading for my fifth fusion surgery. But thanks to a suggestion from confused mom, I'm posting here because I have some questions about St. Louis and Dr. Lenke and I see there's quite a few of you here who have had surgery with him.

    I have been on and off this forum since my first surgery in 2000. Long story short, I have had saggital imbalance since after my second surgery, it was not adequately fixed in the third and fourth surgeries, and has been getting progressively worse with extremely poor prognosis.

    Last June I saw Dr. Lenke in St. Louis and I was SO impressed with him. I'm scheduled for two-stage surgery in March. I will be one week in hospital and one week in rehab. Any information you can give me about Dr. Lenke, his staff and the hospital that I should know? Did any of you do rehab there?

    Having been through surgeries before, I kind of know what to expect there, but being out of town for the surgery for two weeks is what’s worrying me right now. I'm single, no children. The two people who have been my primary caregivers cannot go to St. Louis with me. I have a sister and a brother who may be able to be with me for part of the time. Neither one of them is a very experienced traveler (or caregiver) and I'm afraid they are going to be so overwhelmed.

    My questions center around figuring out all the logistics. I want to organize the trip for my caregivers so I can concentrate on my surgery and not worry about them. I will probably have to spring for them to stay at the Parkway Hotel since neither of them wants to have to deal with a car there.

    Here's the kinds of questions running through my mind .... Have any of you used Guest Services for any arrangements? Did you leave St. Louis the same day you were released or did you stay in a hotel overnight? I thought I saw somewhere that there were home care aides available. Anybody know about that? (My brother might be the one to bring me home but I"m concerned about any personal care I might need after discharge from the hospital and before I leave town.)

    I will be flying home and would appreciate any tips about getting to/through the airport with me in a wheelchair, the luggage, and just general airport hassles.

    My pre-op is next week and I’m allowing extra time to search everything out while I’m there. I would appreciate any tips or suggestions you may have. We can correspond on the forum or via private email if you prefer. Thanks for any advice you can offer.

    P.S. Dr. Lenke is using me for a video tutorial because my case will be “interesting.” I figure he will be extra careful that way, no “oops” allowed on video!
    FeliciaFeliciaFelicia
    10/24/00 posterior fusion T4-L4 at age 57
    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
    5/14/07 posterior revision with fusion to sacrum
    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

  • #2
    Hi Felicia,

    I certainly hope that Dr. Lenke can fix your saggital imbalance issues. I'm sure he can!

    What day is your pre-opt? I ask because I will be in his office on Jan 26th for a 6-month follow-up appointment. If you are there that same day, maybe we could meet and talk.

    My caregivers, husband and parents, stayed at the Parkway for 2 weeks. My husband actually spent every night at the hosptal sleeping on a cot next to me, but he still had a room for napping and showers. I was at Barnes for 4 nights and 5 days (Monday-Friday). After that, I moved to the Parkway also. I spent 7 nights at the Parkway before heading for home in our car (2 days for 470 miles). I kinda wish I had flown home; it was a long drive. We were pleased with our stay at the Parkway; we found the staff to be very kind and accommodating. They are used to dealing with families who are dealing with medical issues.

    I have flown two times since my surgery and would be happy to talk with you about my experiences with flying and with wheelchair assistance.

    If you'd like to speak on the phone, send me a PM with your number. Maybe you can help me to understand those born under the Aries sign....my daugher's sign (smiles).
    Kathy
    46 yrs at surgery, now 50
    71 degree thoracolumbar curve corrected to 34 degrees
    8/2/2010 surgery with Dr. Lenke

    posterior T9 to sacrum with pelvic fixation

    4 osteotomies and 1 cage
    http://s1066.photobucket.com/albums/...athK_08022010/

    Comment


    • #3
      Hi KathK -
      Thanks for your response. Unfortunately, we are just going to miss each other. I will be in STL from the 17th to the 20th.

      As far as drive/fly, Dr. Lenke recommended I fly because of the distance from Michigan. But having been through these surgeries 4 times already, there was no way I would be in a car for that long. I'm even dreading flying, even though the flight itself is only about an hour and a half. Can we say "exhaustion?"

      Dr. Lenke is having me stay in rehab for a week after surgery, probably because he knows I live alone and therefore have to be able to take care of myself pretty quickly after surgery. I'm sure the seriousness of the revision surgery and my age (67) have a lot to do with it also.

      I would love to speak with you by phone. I'll send you a private message. And I'll be happy to talk to you about your Aries daughter!!
      FeliciaFeliciaFelicia
      10/24/00 posterior fusion T4-L4 at age 57
      8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
      5/14/07 posterior revision with fusion to sacrum
      2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
      3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

      Comment


      • #4
        Hi Felicia,
        I can give you a little info about how it went for me in St Louis - traveling from Michigan. My husband was with me - he didn't need to do much hands on care. By the time I was discharged, I could do all personal tasks on my own (using a walker). I needed him there for moral support, company, run errands, and mostly keep track of times for pain meds. (I was no use in the thinking department). I was in the hospital for 6 nights, and in the Parkway for 6 nights - as I had suspected, I was in no shape to travel home the day I was discharged. Since I could do the tasks required of me (PT and OT sign off), I didn't go to rehab. If you stay in the hotel after you're discharged, I think you will definitely need someone staying in the room w/ you - just to make sure you are steady, and again, to help keep track of the medication (very important!). Also, the hospital lent us a wheelchair, which we used for any outing further than a walk up and down the hall. Actually went out to eat, used the hospital salon, a follow up appt w/ Dr Lenke, etc.
        Traveling home was pretty easy. The meds made that possible. We took a cab to the airport, greeted by a prearranged wheelchair escort. Patted down in security, went to the ladies' room w/ my walker. Had sprung for first class tickets home expecting to be very uncomfortable, but didn't really need it. Just had a cushy pillow w/ me at all times.
        Trying to plan and anticipate the travel details was very stressful for me. I know what you're going through, not really knowing what kind of shape you'll be in, etc. I'd say if you're going to rehab for a week for sure, that will be a load off your mind, and you won't have to worry about your sister and brother being up to the task.
        I didn't use any of the guest services. I know some people talk about hiring a private nurse to be at your bedside - maybe someone knows how to go about finding one or if insurance will cover anything like that...
        Lots to think about! I'm excited for you - I bet Dr Lenke can fix you up. Is he going to pretty much redo all your prior surgeries? You're in good hands for sure.
        Nancy
        Age 58
        Surgery w/ Dr Lenke August 23, 2010
        original curves 91 thoracic, 86 lumbar
        fused T1 to sacrum, new curves 50 and 45

        Comment


        • #5
          Hi Felicia,
          I just want you to know that I responded to your p.m. - I haven't sent one before, so I hope it went through...
          Nancy
          Age 58
          Surgery w/ Dr Lenke August 23, 2010
          original curves 91 thoracic, 86 lumbar
          fused T1 to sacrum, new curves 50 and 45

          Comment


          • #6
            I had surgery with Dr Bridwell-same office, hospital,etc. My surgery was Tuesday; released the following Monday; stayed at the Chase Park Plaza because my husband needed a little more room to work(they also have reduced rates for Barnes patients) from the room. I was at the hotel until the following Monday. Since you'll be gong to rehab you probably won't need to worry about a hotel after surgery. I did stay at the Parkway the 2 nights before my surgery. We drove home(Indianapolis) and stopped every hour so I could get out and walk around. We didn't fly because there are no nonstop flights between St Louis and Indianapolis, so by the time you go through Chicago or Kansas City, it's as fast as driving. I did fly for my 8 week followup. A friend went with me and the connection through KC was late on the way out and everything was late through Chicago going home. By 8 weeks I just used a walker, not a wheelchair. You do get to board early with a wheelchair/walker. I am driving over for my 6 month checkup however the end of Feb. My hospital stay was uneventful. My husband left the day after my surgery(Wed) and couldn't return until Sat. I was fine in the hospital by myself. Dr Bridwell came in every morning and the Fellow and lots of nurses to take care of you. I mostly slept if PT wasn't working with me. So being by myself wasn't an issue. My daughter came over on the weekend, but she's an anesthesiology resident and couldn't really take time off. I really think the hospital is good enough that you can do it by yourself. (Barnes is ranked 5th nationally for their orthopedic Dept) Send me a message if you have any questions.
            Age 56
            Wore a Milwaukee Brace for 3 years in hs
            Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
            Thoracic 68
            Surgery Aug 31, 2010 T3 to L1
            Dr Bridwell St Louis
            http://www.scoliosis.org/forum/attac...1&d=1289881696

            Comment


            • #7
              Lisa, thank you!
              I'm still trying to decide whether I need to have someone there the whole time I'm in St. Louis. I'm normally an extremely independent person, but being out of town this way is causing a lot of anxiety for some reason. So I'm happy to hear that you were alone part of the time and it was no big deal.

              The responses I'm getting here are helping me toward making some decisions - thanks!
              FeliciaFeliciaFelicia
              10/24/00 posterior fusion T4-L4 at age 57
              8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
              5/14/07 posterior revision with fusion to sacrum
              2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
              3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

              Comment


              • #8
                Hey Felicia - good luck with your decisions; this forum is very helpful. Let me know if you have any more St Louis or Barnes questions.
                Age 56
                Wore a Milwaukee Brace for 3 years in hs
                Fused L4-S1 for high grade spondylolisthesis Jan '09 in Indy
                Thoracic 68
                Surgery Aug 31, 2010 T3 to L1
                Dr Bridwell St Louis
                http://www.scoliosis.org/forum/attac...1&d=1289881696

                Comment


                • #9
                  I had surgery with Dr Bridwell Dec '07. We flew from Asheville, NC on Sunday, for pre op procedures on Monday. My surgeries were done Tues & Thurs. My husband is not the caregiver type, can't sit still, so we arranged for him to stay just thru Sat, then a friend joined me until my d/c from hospital the next Weds. Went to the Parkway for another week - my brother came up to stay with me. I definitely needed him because I could not get out of bed by myself and seems I woke every couple of hours to go to the bathroom. He helped check my incision daily and put on compression stockings, etc, but I could do basic self care in the bathroom. We drove back, but took it very slow, spent 2 nights on the road.

                  The only glitch, or confusion came in the hospital discharge process. I wanted to contact guest services, nursing staff didn't seem to know the process. They wanted me to take a shuttle bus to the Parkway - how could I bounce around on a bus ? I wanted my friend to wheel me over in a borrowed wheelchair. In the end, the D/C planner wheeled me over to the hotel.

                  Good luck to you
                  Jan Lotherington,
                  56* thoracic curve, 50* lumbar curve
                  A/P fusion T3-Sacrum, Dec 11&13 2007
                  at age 55
                  Dr Bridwell

                  Comment


                  • #10
                    Gee whiz, Jan, you would think the nurses would know that a shuttle bus isn't what you want to do after surgery!! They must have come a long way since then; it was either Nancy or Kathy that told me the hospital let them borrow a wheelchair to get back to the hotel. Thanks for the info - I'm kind of narrowing in on a plan.

                    I'm off to STL in the morning for my pre-ops.
                    FeliciaFeliciaFelicia
                    10/24/00 posterior fusion T4-L4 at age 57
                    8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
                    5/14/07 posterior revision with fusion to sacrum
                    2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
                    3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

                    Comment


                    • #11
                      Well, I'm back from my pre-op tests in St. Louis. I was going to stay one more day, but since they had a huge snowstorm heading their way, I paid the big bucks to change my return. Even though there was a long delay at the airport because of our plane coming from Minneapolis, I did finally get home at 2 in the morning. But that was still better than getting snowed in in STL - they got about 8 inches of snow overnight.

                      Everything went very well. I am so impressed with how efficient, professional and helpful everyone is, from the Parkway Hotel staff to the office staff and doctors to guest services to the various testing locations.

                      There were a couple of surprises - Dr. Lenke will be doing more than I expected, with the end result that I will be fused all the way from T1 to sacrum. Whew!! Also, they had told me I would go into rehab for a week, but now I am told that due to insurance requirements they won't know if I qualify until after the surgery. If I don't, then I need to stay in the hotel with a caregiver until they release me to go home. Well, I was planning on having a brother there during rehab and to bring me home. Now neither he nor I are comfortable with the hotel option, understandably.

                      I don't know what I'm going to do. Have to think about this one. There are times a husband would come in handy .....
                      FeliciaFeliciaFelicia
                      10/24/00 posterior fusion T4-L4 at age 57
                      8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
                      5/14/07 posterior revision with fusion to sacrum
                      2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
                      3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

                      Comment


                      • #12
                        You were smart to get out while the getting was good. I read in the STL Post-Dispatch (on-line) that there were a few flight cancellations today, but it was not too bad at Lambert. But, you had to be able to get to the airport, and a lot of the city is pretty bad (unless your a kid, enjoying the snow day, then it's pretty good!).
                        I have no words of wisdom for a scoli surgery vet like you, but it might be a good idea to have your brother spend some time reading through posts on this forum. I think it'll be a big help in preparing him - or anyone's friend or family member who will be around us, freshly post-op. It's such a heavy duty surgery that I don't think most people, if they haven't been REALLY prepared for what life is in those first few weeks, have a reasonable picture of how it's going to be. If caregivers are expecting OUR post-ops to be along the lines of the gallbladder or hip replacement folks. . .I could see that they could freak. Whatever info they can walk into this as far as WHAT TO EXPECT, WHAT IS NORMAL could be invaluable to them too.

                        March 9 and 11. . .I am sooo looking forward to reading that you crossed this bridge, all is successful, and can put this saga behind you.
                        Fused T-3 to L-3, Aug 25
                        Hardware removal surgery, Nov 2, 2010
                        Fused T-10 to L-2, osteotomy, Feb 22, 2011

                        Comment


                        • #13
                          IM in Hazelwood Mo we got 11-12inches..you are lucky you got out, supposed to snow again tomorrow with about 2 more inches then Sunday into Monday we are hearing another 3-6 inches!!!! ugh. My son goes to Dr Bridwell Monday for his 4 month post op its going to take forever to get there...
                          Kelly
                          mom of Cameren 12 yrs. old
                          Chiari,retroflex odontoid,syringomyelia,scoliosis
                          Chiari decompressions 6/2005,5/2006
                          Syringopleural shunt 6/2009
                          Boston Braced off & on 6.5yrs
                          scoliosis surgery- 9/15/10 T4-L4 Dr. Bridwell
                          Fell & broke finger,surgery 3/2011

                          Comment


                          • #14
                            Yes, I was lucky and got out just in time. In fact, when I went to the airport nothing was happening weather-wise, but by the time we boarded a few hours later, the snow was coming down very hard. We had to de-ice before we took off and I was still afraid that they would cancel and turn around. I was very relieved when we finally took off!

                            Question: Has anyone hired a nurse, nurse's aide, home care worker or anything like that when they were in St. Louis? I'm looking at all kinds of alternatives for the maybe rehab/maybe not decision I'm facing.

                            Thanks.
                            FeliciaFeliciaFelicia
                            10/24/00 posterior fusion T4-L4 at age 57
                            8/5/05 posterior surgery for spinal stenosis at L4-L5; laminectomy and fusion
                            5/14/07 posterior revision with fusion to sacrum
                            2/11/08 anterior discectomy L5-S1, and reinforcement of fusion with plate attached to L5-S1
                            3/9/2011 and 3/11/2011 revision surgery with Dr. Lenke, St. Louis - complete revision and fusion with instrumentation from T1 to sacrum, one lumbar osteotomy.

                            Comment


                            • #15
                              Felicia,
                              I had my surgery with Dr. Lenke on Jan. 5th. I know there are other good surgeons, but I think he's right there at the top. I hope you can find someone to stay with you.
                              Karen
                              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/

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