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  • Surgery scheduled in August - a few questions

    Hi everyone, I recently saw Dr. Lenke, we really liked him and I am now scheduled for surgery in August. My largest curve is 70 degrees lumber (not sure what the smaller is) It will be T4-Sacrum, 5 Osteotomies, and 2 tlif’s He also said that I needed two fusions in my neck but he would refer me to his colleague who specializes in cervical after my back is healed. I had no idea anything was wrong in my neck, but the MRI shows severe stenosis and cord impingement. Has anyone had fusion in their neck? If so, what is it like and how much motion do you retain?

    Also, I’m trying to figure out the logistics for the first surgery. Has anyone used the Columbia-Presbyterian Spine Hospital recently or know what the visitation is like? Should my husband stay over with me the first night or so? Would that help and relieve the nurse staff? We live 2 hours away so I’m wondering if when I’m discharged should I stay in a close hotel, or would it be OK to go home? I have sons ages 17 and 20. Of course they can stay alone but I still worry and am trying to figure out the best plan for everyone.

    Thank you so much to all for the help. Reading the experiences has been a tremendous source of both knowledge and reassurance. Thank you to everyone here who support those of us who have yet to go through it. I hope to be an asset afterward as well!
    -Ripley

  • #2
    Good luck to you and welcome Ripley. I can't answer any of the hospital stuff as I'm new also to all this and am possible undergoing fusion with Dr. Lenke as well. I would like to follow your thread though and learn also about all that.

    The packet they gave me had so much information in it that I didn't get to look at everything yet, its just so much.

    I live in Louisiana so will be travelling and doing all this by plane. I have no idea how all this will pan out.

    I am sorry to hear about your neck and especially with you not even realizing it. Maybe it would adjust a little on the good side after your fusion and not require it, although I really don't know how all those curves move that aren't fused after surgery.
    Melisse
    Age: 42: with 42* Lumbar, 32* Thoracic.
    Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
    Wore Boston Brace 2 -3 yrs

    Comment


    • #3
      Packet contents

      QUOTE:
      I live in Louisiana so will be travelling and doing all this by plane. I have no idea how all this will pan out.

      Hi Melisse, Did your packet include the recommended hotel/other lodging info? Your pre-op testing will necessitate an overnight stay. I managed to squeeze everything into a 12 hour day, which will be actually 16+ because of the round trip from the Philadelphia suburbs. The traffic is murder there unless you are travelling in the middle of the night. We left for an 8:15 AM appt w/ Lenke on Dec 6 at 5:00 AM. It was 7:50 when we arrived. NYC is only ~ 90 miles away as the crow flies, so that gives you an idea how bad the traffic was. The initial check in takes some time, they have to gather all your personal/ insurance info of course, they do a scan of your palm for ID, and then you get a full body X-Ray. ( I faxed as much info to his office as was possible beforehand, but still the initial intake took some time, mostly waiting). I made into Lenke's office at 8:12. By the time I left, about 10 AM, his tiny office had put seats out in the hallway. He is a very busy man it would seem. Given that, I was very pleased with the amount of time he spent with me. I had a whole list of questions, which he addressed fully and never seemed like he was in a rush. He was trailed by a gaggle of interns/residents. However I am very fortunate compared to you. The one hotel has discounted rates for Lenke's patients, along with other lodging options. Let me know if you did not receive this or the general information document ( #20 two sided pages), I can scan and email them to you if you like. If you have any other questions please feel free to PM me. Chet

      PS They should have assigned you a case manager. Mine is Angela, she is my 'go to" person. Every question I have had since the Dec 6 OV has been answered by her within a day of submission. It is a totally different experience compared to the operation at Johns Hopkins. These people at Lenke's are pros and don't fool around.

      Comment


      • #4
        Hi Chet,

        Yes, my packet did include lodging. I was wondering if my husband would be able to even stay in the room with me while in the hospital, whether in ICU or a regular room. I really don't know all the details but am emotionally trying to accept all this, that parts not as easy yet.

        When is your surgery? I wish you the best and will be praying for you Chet. Dr. Lenke is from what I read very gifted and trusting, something I havent been able to find these last several years in Louisiana.

        Hopefully on my next visit, I will be better prepared with my hesitations and questions in order to find peace with my decision.
        Melisse
        Age: 42: with 42* Lumbar, 32* Thoracic.
        Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
        Wore Boston Brace 2 -3 yrs

        Comment


        • #5
          Thanks and good luck to you!

          Hi Milisse, I'm wondering if we were actually in the waiting room together on the 21st? Anyway, the Hyatt Place hotel in Yonkers seems very nice. My husband and I stayed there and the mall attached gives something to do. Thanks for the encouragement. I've done all the research and I know this is the right thing to do , even though I still feel like I'm not a "scoliosis" person! It all feels very surreal to me. I've decided I just can not think about it. I've made informed decisions and researched the best doctors, so I'm just organizing the calendar and letting go at this point. I'm going to go through the motions, fall asleep, and deal with the outcome when I wake. Hopefully we will each experience a very positive new awakening! I've seen all the big names in NY and I like Lenke the best. I saw Lonner too. I liked him, but his staff kept calling with money information and lowering prices, so I didn't really like that. I have great faith in Dr. Lenke. I wish the best for you. Let me know how you are doing and I will post as soon as I am able post-op!

          Comment


          • #6
            Hi Ripley,

            Yes I was there on the 21st also. I think I made it upstairs right at 8:30. I remember another husband/wife sitting there across from us.. Was that you? If it was, I remember thinking how sweet you both were holding hands.

            I really admire your attitude, I'm trying to accept all this and find peace, I guess I'm scared which is what probably all of us feel at some point.

            I'm glad to hear about that hotel in Yonkers, we ended up staying in Central Park, it was our first time to New York and we really over did it! We walked a lot t see a lot of sites and I was pretty sore. Next time I go back, I'll be staying in Yonkers so no need to tour again

            I know what you mean about not feeling like this is all happening... It is surreal, I mange to sleep well and when I wake up, I think I actually need surgery and then I go about my day and try to stay focused and not be overwhelmed.
            Melisse
            Age: 42: with 42* Lumbar, 32* Thoracic.
            Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
            Wore Boston Brace 2 -3 yrs

            Comment


            • #7
              Lenke date & a few thoughts

              [QUOTE=Kay1974;168786]Hi Chet,
              When is your surgery?
              Hi Melisse, It is July 10. But as they will tell you at a later date, that could change at the last minute. I fully understand that as a previous surgery booked for 12 hours might turn into an even longer ordeal, causing everything to be bumped back a day or two.
              You will be given, or got already, all of your pre-op testing needs. Some can be done locally, some Lenke insists only be done at The Spine Hospital. Angela advised me to schedule all of the local exams as close as possible to the pre-op visit date; mine is May 16. I will get 3 CTs, 3 MRIs, talk to Lenke, the pain management team, etc...

              It is a shame you have to travel so far. I dislike living here because of the Winters, but it does have some advantages. Still, the trip to NYC is a grueling affair, knocking me out of action for days after. I will loop you in if you like as my experience unfolds. it is not too early to be checking into what kind of rehab facility your insurance will pay for. If you check back on my "Post op must haves" thread you will see a post about what to look for in residential rehab facilities. It will be one Lenke recommends in the NYC area as he sends teams out regularly to check on your progress. I would recommend ArcMate grabbing tools, they are virtually indestructible and carry a lifetime warranty. I have several stashed around the home and seeing as bending is verboten post op no matter the amount of help you have at your disposal, I would think they will come in very handy. Just a few thoughts... Chet

              Comment


              • #8
                Hi Chet.

                Yes, please keep me informed on all this and how it unfolds. My mind is very scattered but I'm really trying to stay focused.

                It is hard being in Louisiana and trying to figure out surgery and where I'm going to stay up there. Dr. Lenke said to stay in the area after surgery for approx 3 weeks so We are starting to see what our choices would be.

                I have already bought a few things that I'm using now... Grabbers, etc. but I will need other things too it seems after reading several post here.

                I did enjoy NYC but I'd be lost if I lived there and afraid could not make it there. I'm from a town of about 1500 people and everyone knows everyone kinda town. It's a small country town and it suits me just great. I'm simple and don't like a lot of glitter I guess.

                I will be back in June for more test also and plan on getting it all done at that spine hospital. The staff seemed really nice and I'm sure all the equipment is excellent.

                Thanks for all the advice.
                Melisse
                Age: 42: with 42* Lumbar, 32* Thoracic.
                Diagnosed with Adolescent Scoliosis @ 12 y.o. Thoracolumbar curve was around 28*
                Wore Boston Brace 2 -3 yrs

                Comment


                • #9
                  Hi Melisse & Chet,
                  I figured I’d jump on this thread with you both.
                  I am scheduled for surgery with Dr Lenke on Apr 20th – T3-sacrum. Originally, scheduled for late March but was postponed due to his recent shoulder scheduled. Anyway, we were in NYC in January for my pre-op tests and stayed at the Hyatt Place in Yonkers - https://newyorkyonkers.place.hyatt.c...otel/home.html. There is a discount code you can enter online (Angie can send it to you) but I found you may be able to wrangle a better rate if you speak to a live person. The hotel is 7 miles , 10mins from the hosp. depending on traffic. Easy, easy to get to using the WAZE navigation app.

                  We are booked at the hotel for 2.5 weeks beginning 4/18. They said I could extend the reservation if we need to stay longer. Hopefully, we won’t have to and can head home early May.

                  Melisse - When in June will you be in NYC? We will be back there 6/20 for my post-op.
                  Good luck to you both!
                  Janice

                  Comment


                  • #10
                    2.5 weeks

                    Hey Janice, If your surgery date had been in early May, maybe I could have stopped in to see you during my 5-16 pre-op visit. I can only use my experience with a broken femur as a guide. I was in a reidential rehab for 9 days for that. (I don't know if the stay would have been truncated if I had 24/7 help around the house.) The layout of my home is no help- and putting everything on one floor is not a viable option. That means climbing 13 steps to get from the 1st to 2nd floor. I truly do hope you are on your way home 2.5 weeks after surgery, but that may be a bit optimistic. I have consigned myself to the strong possibilty I will encounter at least one serious post op complication. I fully expect to be ensconsed in a residential rehab for at least a month post op, until I can demostrate self sufficiency with stairs and the basics of living. I do have help lined up for grocery shopping, etc... I have a few people I could call if I really found myself in a bind, but asking them to leave work and tend to me is something I don't want to do. You should be back home by the time I make it up there on 5-16, so your experiences will be a guide for both Melisse and myself. It will be here before you know it. Chet

                    Comment


                    • #11
                      Hi there! I had surgery last June and just thought I would chime in. First, find reassurance and trust that you have picked an excellent surgeon. That is the most important factor! My main advice is just to plan on recovery taking longer than you would except. I went in ready to prove to everyone I could get back to my normal life in a few weeks and you know what, that was not possible. It is a massive surgery that literally will have you bed-ridden more than you would like. It will take every bit of energy and endurance to get up to walk around the room. I did not leave the hospital for 10 days and thought I was going to be there 5. I did not think I could make the 20 minute car ride home because sitting up initially was very painful. Once home, I did not leave the house for 5 weeks until my first follow-up. I needed 24 hour care from my loving family that first month. I would have done a rehab facility if I had not had their care. I could not do anything for myself besides use the restroom. I don't want to sound dramatic but I really did not think it was going to take that long. I did not drive for 2 months. I recovered amazing, was off all pain meds in 3 months and have no pain now. I am so glad I did the surgery. Just plan on a back-up plan! The first night you will be in ICU, my husband did stay in the room but I was so medicated I had no idea he was there! They will take good care of you.
                      All the best,
                      Jana
                      Diagnosed with idiopathic scoliosis at age 11
                      Dr. Edgar Dawson of UCLA
                      Braced and "stopped" below 50 degrees
                      Age 25: 47 degrees, 48 degrees
                      Age 38 (3 babies later): 60 degrees, 63 degrees and 2.5 inches shorter
                      Age 41: 64 degrees, 70 degrees
                      Dr. Gregory Mundis Jr. of Scripps Hospital, La Jolla CA
                      June 2015-ALIF on L5-S1 for a slipped and degenerated disk
                      June 14, 2016-T4-L4 spinal fusion with instrumentation
                      Post-surgery: 16 degrees, 12 degrees and 2 inches taller

                      Comment


                      • #12
                        i had t4 to sacrum surgery with Dr. Lenke six years ago. I was so fortunate to live 35 miles from the hospital when he was still in St. Louis. I have often thought that my results might not be the same had my surgery been with a different surgeon. For those of you who have to travel to NYC, i think it's worth it to have Dr. Lenke for your surgeon. I am sure you will all support one another during your pre-surgery stressful time and during your recovery. The waiting time was by far the most difficult for me.
                        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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