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  • Any advice???

    Hi everyone! I am new here and counting down the days til my surgery on June 18. I am extremely nervous! I guess I am having an anterior post fusion T8-L2, post fusion T7-L5... what that means I am not exactly sure. All I know is they are going in on my right side and my back. My doctor hasnt been the most informative person. I have seen him once back in December and I wont be seeing him again until the operation. I am scrambling around trying to get stuff neat and organized around the house. Is there anything I should go out and buy ahead of time to make things more comfortable for myself? And my bedroom and bathroom is upstairs. Should I bring a bed down to the first floor, is stairs off limits? What can I expect? Help!

    Leanna
    Leanna
    32 yrs. old
    surgery scheduled for 06/18/10
    90* pre-op
    23* post-op

  • #2
    Hi Leanna

    Welcome to the forum.

    The one thing I would get is a foam topper for your bed. There are threads on this subject here, most seem to agree on 4 inches thick, latex foam. I went with 2 inches thick, it helped, but 4 inches would have been better. It is uncomfortable to roll over and apply pressure on your bandage.... You will sleep on your left side for awhile. I like soft moldable down pillows.
    http://www.overstock.com/Home-Garden...tml?rcmndsrc=2

    Your insurance company will supply you with your walker, grabber, and a few other items you might need..

    It would be a good idea to have a bed downstairs close to a bathroom. They will have you climbing on stairs at the hospital before you are released, but a fall is out of the question.

    It would be a good idea to keep reading here and posting your questions....There are some great great people here!
    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


    • #3
      Suggest you go to the Store section of this website and under Catalog order this book:

      Scoliosis Surgery, The Definitive Patient's Reference: Third Edition
      by Dave Wolpert
      Swordfish Communications, LLC

      It has been THE most helpful thing for me. You can have a rush delivery, and it is a quick read.

      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


      • #4
        Hi Leanna....

        I think it might be a good idea to call your surgeon's office and tell them that you'd like a thorough description of their surgical plan, and that you have some questions that you'd like to have answered before your surgery. What you're about to undertake is a pretty big deal, and you should be thoroughly informed before you agree to surgery.

        Here's a link that should help you get ready if you decide to go through with it:

        http://www.scoliosislinks.com/PreparingforSurgery.htm

        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

        Comment


        • #5
          Hi Leanna,
          You and I live very close to each other. I live in Wheeling, WV. I am wondering where you are going to have your surgery? Is that all the information that you have, and who your Doc. is?

          Oh, and welcome to this forum!!! You will find all the information, support and compassion that you can stand.

          Shari

          Comment


          • #6
            Originally posted by LindaRacine View Post
            Hi Leanna....

            I think it might be a good idea to call your surgeon's office and tell them that you'd like a thorough description of their surgical plan, and that you have some questions that you'd like to have answered before your surgery. What you're about to undertake is a pretty big deal, and you should be thoroughly informed before you agree to surgery.

            Here's a link that should help you get ready if you decide to go through with it:

            http://www.scoliosislinks.com/PreparingforSurgery.htm

            Regards,

            Linda
            Leanna, this is very good advice. Don't know how long you've been incubating this idea, but it really takes a LOT of inner readiness based on education, to make an informed decision - especially one this big. "Titaniumed" describes it on another thread as "the most important decision of [your] life". I'm struggling with it, myself, and I can scarcely get around in my own house and need a walker for any distance!

            Excuse me, if you know very well lies ahead, only not your precise surgical plan. (I only just got the details on my proposed plans from the three surgeons I saw in March. I asked for their reports since as I thought about it, I hadn't remembered enough from the actual consults).

            Best of luck! Note, you might want to consult with some moms of young children who have had or are about to have the surgery, for how they dealt with preparing their kidsl Some names, Lynnette and three (I think) of the "four J's" referred to in another thread.
            Last edited by Back-out; 06-05-2010, 02:34 AM.
            Not all diagnosed (still having tests and consults) but so far:
            Ehler-Danlos (hyper-mobility) syndrome, 69 - somehow,
            main curve L Cobb 60, compensating T curve ~ 30
            Flat back, marked lumbar kyphosis (grade?) Spondilolisthesis - everyone gives this a different grade too. Cervical stenosis op'd 3-07, minimally invasive

            Comment


            • #7
              Originally posted by titaniumed View Post
              Hi Leanna

              Welcome to the forum.

              The one thing I would get is a foam topper for your bed. There are threads on this subject here, most seem to agree on 4 inches thick, latex foam. I went with 2 inches thick, it helped, but 4 inches would have been better. It is uncomfortable to roll over and apply pressure on your bandage.... You will sleep on your left side for awhile. I like soft moldable down pillows.
              http://www.overstock.com/Home-Garden...tml?rcmndsrc=2

              Your insurance company will supply you with your walker, grabber, and a few other items you might need..

              It would be a good idea to have a bed downstairs close to a bathroom. They will have you climbing on stairs at the hospital before you are released, but a fall is out of the question.

              It would be a good idea to keep reading here and posting your questions....There are some great great people here!
              Ed
              Thanks Ed, I will look into getting the foam topper and lots of pillows. Did they do the anterior and post on you also? In the same surgery?
              Leanna
              32 yrs. old
              surgery scheduled for 06/18/10
              90* pre-op
              23* post-op

              Comment


              • #8
                Originally posted by Shari View Post
                Hi Leanna,
                You and I live very close to each other. I live in Wheeling, WV. I am wondering where you are going to have your surgery? Is that all the information that you have, and who your Doc. is?

                Oh, and welcome to this forum!!! You will find all the information, support and compassion that you can stand.

                Shari
                Hi Shari You are right Wheeling isnt very far away! Its funny, before I joined this forum I felt very alone like I was the only one with scoliosis, but there are many more people with it than I thought and the support on here is wonderful. I am going to have my surgery at St. Elizabeth in Youngstown, Ohio. I have heard bad and good things about that hospital but Im sure thats the way it is with all hospitals. My doctor is Paul Pagano and his assistant surgeon will be Dr. David Thomas. They both seemed confident when I went to see them, however I think I learned more from my doctor's assistant Dr. Thomas. He seemed really caring also. I pray I am in good hands. I was first told that they would do the surgery in segments. Side on the first day and back on the second. I learned two days ago they are doing both the same day. I am kind of nervous about that but I want to get it done and over with so I can begin my long journey healing. I really dont know much at all so anything you or anyone can think of will help me tremendously. I used to take karate and weightlift also. Im sure karate will be a major no no, but will I ever be able to bodybuild again?
                Leanna
                32 yrs. old
                surgery scheduled for 06/18/10
                90* pre-op
                23* post-op

                Comment


                • #9
                  Hi Leanna - I am at 7 weeks post op and here are a few of the things that were great additions to our home. I too have our bedroom upstairs, we ordered a hospital bed for the living room and I am just giving it up this Monday. It was fantastic to be down where life was and also the flexibility of the bed was great. We padded it well and I was very comfortable. Also a chair for the shower and also added a hand held shower head so I could sit and shower. Also raised toilet seats with handles was good. And pillows for the car, regular soft bed pillows worked fine, $6 at Target. Also it helps to have your closet and bathroom items arranged at home so you don't have to bend to get things or reach to high. I put alot out on the bathroom counter and lined slip on shoes up so I could just slip them on.
                  Hope this helps a little.
                  Shari - 55 years old
                  Pre-Surgery 62 degree thorasic curve with shifting.
                  Post op 13 degree curve.
                  Successful surgery 4/15/10, T3-L2 fused.
                  2nd surgery to reopen incision 10" to diagnose infection, 5/18/10
                  Beaumont Hospital, Royal Oak, MI - the late Dr. Harry Herkowitz
                  www.scoliosisthejourney.com

                  Comment


                  • #10
                    Leanna

                    Yup. I had 2 surgeries, Anterior was on a Tuesday, Posterior was 2 days later. I had an extremely difficult and long anterior, and have a long vertical scar in the front. The scar on my back is from my neck to my "intergluteal cleft", that’s the crack in Latin. LOL You have to have a sense of humor to be doing these sorts of things.

                    It sounds like they might use portals for your anterior. Its just a hunch, since large cuts are nice to avoid....There are no guarantees with this, it’s a logical assumptiom.

                    You can google for info, but basically, anterior scoliosis surgery is used when the lower (lumbar) area cobbs are high and stiff. They use this method to have better access to the spine, (which is from the front) remove the discs, scrape the plates, insert spacers or cages (which hold autograft bone, or BMP) and release the spine as a prep for the posterior surgery, which is when they install the screws, and align the spine. SSEPs determine exactly how far they will go, sometimes overcorrecting can be a bad thing. These are electrical signals. (When you vacuum, you don’t want to pull the cord from the socket)
                    http://en.wikipedia.org/wiki/Evoked_potential

                    Its so hard to offer advice when there isn't much time left. You have to realize that this is serious surgery, and trying to explain a complex procedure and what to expect is difficult in a short timeframe. You or anyone else can e-mail me if you want, I can explain so much more on the phone. There are many knowledgeable ladies here also that will talk to you. titaniumed@hotmail.com I agree with all the above posts, but they are just the tip of the iceberg.

                    I was a Luque wire candidate in 1974 with twin 50s. Since that was back in the "dark ages" of scoliosis, I decided to wait. I always knew I would have my surgeries at some point, and watched and waited till technology and advancements improved. Even with the introduction of the "pedicle screw" in 1983, to replace wires and Harrington rods, (bumper jacks) it still deserves thought. Even though I came through pretty good, and maintain an active lifestyle, surgical candidates should be informed so they know exactly what to expect, and not be surprised when something doesn’t go smooth. The body is an extremely complex machine.

                    Its nice to know.
                    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


                    • #11
                      hey Leanna, I am 6 months post this week. I had my surgery done on December 9th and it was anterior and posterior surgery. They went from T10 to L5, but doctor wanted to go down to S1. From my understanding, most doctors do not want to stop at L5 because of additional surgery in the future. The stress you put on the last disc is great, which leads to more surgery. I convinced my doctor to stop at L5 and I'm suffering from some pain already. Topper for the bed is a necessity. For the hospital I took, robe, slippers.

                      rich

                      Comment


                      • #12
                        Rich

                        What is your surgeon saying? You are only 6 months out....

                        You just answered Sharon's question on the Dr Hey thread.

                        levels.....
                        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


                        • #13
                          hey Rich
                          i remember your concern about what level doctor would operate to...i really really hope your pain is coming from something else, and not what you think it is from!

                          i echo Ed...have you spoken to your surgeon about this?

                          hope you get some relief soon!

                          jess

                          Comment


                          • #14
                            hello

                            Hi Leanna-- I had surgery way back now-Aug 2006 & I have my bedroom/bath upstairs but also a bthroom downstairs.
                            I was fine with my bed upstairs. I just did not come down the stairs much in the beginning of recovery.
                            I was up in bed A LOT!! Looking back the best thing was the raised toilet seat.. & chair for the shower too..ah memories!
                            Best to you,Lynne

                            Comment


                            • #15
                              Hi I am just one month out but I just wanted to say to get alot of grabbers and leave them all over your house.This way you will not have to walk back and forth looking for them. You will need them in every room of your house

                              Good luck .

                              You will be fine . do not take too much to the hospital as you will not need it. Take your toiletries, a robe, slippers what ever you wore to the hospital you can wear home.

                              Melissa

                              Comment

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