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  • I have my surgery date, picked my doctor, now what?

    I have finally made a decision about my doctor and decided after seeing 2 others to stick with the doctor I have been with for 6 years. I feel the most comfortable with him and he treats his patients like family, which is very important to me. On my last visit, he told me my surgery would involve fusion of T3-L2. My top curve is at 57 degrees now. I can put off the surgery for a few more years but have decided it would be best to just get it done before it gets worse. I am very nervous about it but trying to stay positive and know that the first few months will be tough for me as well as my family but that in the long run, I'll be better off. I haven't told our children yet but will soon, as surgery is planned for mid- November. I'm hoping to be back at work, at least PT in January.

    What can I expect before the surgery and are there things anyone can recommend to do to prep in advance and make it easier on my family? The hospital will be about 40 minutes way from our home. Thanks for your input and advice. Its really nice to have some support from others who have gone through this or are planning to.

  • #2
    What an exciting and stressful time! Having four children of my own ranging from 15-5 I was very worried about the effect my surgery would have on them more than on myself, but when it came down to it they are ten times braver than I ever could hope to be. The took on all the chores in the house and to this day are still tending to the laundry and taking turns on cooking/dish duty to help me out after long days at the office.

    I think one of the main things to prepare is to make sure you are in the best shape physically that you can be in. Add as much swimming as your body will allow. It will help with the recovery.

    Post-op proof your home (like baby proofing) but with the idea that things you need to be placed with-in reach and that throw rugs are out of your way. If you have young children having a friend take on meal planning for a few weeks is a great help. My friend used www.takethemameal.com to organize it and it was a huge help (especially since my husband is not a good cook). :-)

    Who is your doctor?

    If you have any question feel free to ask. I have learned that no question is too embarrassing or stupid and there are many on here going through the same thing and can give strength and advice.

    Good luck! I will be praying!
    Tamena
    Diagnosed at age 12 with a double major curve

    Braced till age 15

    SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

    Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

    Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

    Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

    Comment


    • #3
      Thank you for your feedback, that's very helpful. Our children are 13 and 6 and I think will be helpful but I don't want to be a big burden on anyone. I'm a bit of a control freak and I know I'm gonna have to give most of that up for a little while. How long was your recovery? I'm very curious to know how long it has taken everyone to get back to work. I know this will vary quite a bit depending on your surgery and what kind of work you do. My doc is Dr Hsu in PA. I love the meal idea and worry about who's gonna do all the cooking, with my husband having a demanding job and taking care of me and the kids. Thanks for the tips on exercise too. I really need to get going on doing more, but have been walking on the treadmill and do yoga, which I love. I'm really going to miss it!

      Comment


      • #4
        Big decision!

        I know what a big decision this is. It took me quit a long time to come to mine. How old are your children? Mine are 11 and 16 and I was very open with them. I wanted them to know that there summer was going to be limited due to my recovery and we all had to make the decision as to put off our annual summer vacation as they wanted me to be top notch so we planned it for the fall break instead. My family was amazingly supportive. I also showed the kids an animated version of the surgery so they had an idea of what the surgery entailed. (Nothing real!!!)
        My kids were old enough to help out with meals and chores. My mother was also here with us for a month for everyone's comfort. Ideally I needed her for two weeks. I had a network of friends that did meals for me for two weeks. If you do not have that I would precook and freeze meals or find easy to prepare meals.
        Again, I was very open with my kids. My 11 daughter came with us to my preop appointment and my amazing surgeon answered any and all questions she had. He is a very kind man!!! Her biggest question was if I would be able to mini golf again. Cutie!
        As far as tests, seems everyone is different, I had blood work and a chest X-ray to be done before mine. Pretty simple. I also made sure to be aware of medicine I was taking and went over that with my doctor within the month of surgery.
        Hope this helps! Best wishes. You have a long wait but getting things lined will be very beneficial.

        *Jen
        Surgery May 7, 2013
        Pre: T50 L48
        Post T20 L0
        *Jen
        Fusion surgery with Dr. Chang May 7, 2013
        Pre-T:50 L:48
        Post-T:20 L:0
        Degenerative disk disease through spine and neck with bulging disks as well. Spinal cord deformity in the area of C5-6.
        {On the road to a lifetime of forever with a back not holding me down!! Vacations, playtime with the kids, adult excursions! Life is moving forward not holding me back }

        Comment


        • #5
          I had a short fusion (I was trying to keep from losing my range of motion, which did not work out too well for I am looking at a long revision surgery in the near future) but I raced back to work as fast as I could at 2 months post-op. I do not recommend this because it was tough and really put a glitch in the recovery. Take your time and listen to your body and don't feel that you have to be superwoman. I too am a control freak, but you have to give that up until you feel 100% again. Let go and let God is what my oldest told me quite often. Great advice that I will be using for the next go round.

          Tamena
          Diagnosed at age 12 with a double major curve

          Braced till age 15

          SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

          Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

          Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

          Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

          Comment


          • #6
            Welcome! With children, depending on their developmental age, I encourage you to involve them as much as possible in your hospital stay and recovery. Show them carefully chosen pictures from other people's hospital blog, lots of which are on You Tube. I would show them pictures of incisions and people with IVs. While it is probably traumatic for very young children like probably your 6 year old to visit you right after surgery with all of the tubes,etc., I would suggest that someone clean your face and comb your hair and take a cell phone short video of you saying hi to your youngest. Giving her a picture of you cleaned up postop with your best smile and wave might reassure her as well as a very short phone call. Sometimes younger kids are afraid that you will die in the hospital. You might consider giving the 6 year old something personal of yours to "hold" for you until you come home again.

            Most kids love to help with recovery such as picking things up or bringing you a pillow. Buy lots of grabbers as younger kids LOVE to use them and you might not be able to find one if you only have a limited number.

            Have lots of extra pillows.

            Food? Make ahead and freeze, get friends, church people, and neighbors lined up, have husband/friends buy prepared meals available at Costco, know the number for pizza delivery. My 13 year old grand daughter is a good cook but a limited repertoire. Maybe work with her before surgery on a few meals that she can make for the family after surgery.

            House cleaning: hire someone to change sheets, clean toilets, do floors, etc.

            In my opinion, recovery cannot be totally appreciated until you are in it. It seems to always take longer than you want it to. It is amazing to me how much time it took me to get in and of bed and get comfortable for example.

            When I came home from the hospital, I let my grand kids touch my incision after they washed their hands well, if they wanted. One wanted to touch it, but the other did not, but both were fascinated with my scar and pictures of my hardware.

            You are planning way ahead and you will do well,
            Susan
            Last edited by susancook; 07-22-2013, 03:02 PM.
            Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis

            2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
            2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
            2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
            2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
            2018: Removal L4,5 screw
            2021: Removal T1 screw & rod

            Comment


            • #7
              i am a retired social worker....
              just a suggestion...
              obviously, 6 year old will have different reaction than older child...
              i would be more careful with younger one...
              could be a little more frightening to her...

              question...have your kids ever had a doll they took care of, as if they
              were playing at being a nurse...???
              you could show a young child some care taking , using a baby doll...

              just a thought...to make it less scary to a little one.
              it can be upsetting for any child to see a parent in hospital...
              important to emphasize you will be coming home and healing at home..

              jess...and Sparky
              Last edited by jrnyc; 07-22-2013, 03:01 PM.

              Comment


              • #8
                I did not have my children come to the hospital. I did not want any of them to see me hooked up to any machines or sounding crazy from the meds. I did talk with them on the phone once I felt clear in the mind, or at least where I felt I would not be slurring my words. I think hospitals can be scary no matter the age. I did discuss the surgery with the older two and with the younger two talked about how gentle they are going to need to be and things that I would not be able to do for a while. They all saw my incision once home and my husband used it to explain why I was sleeping so much and moving so slow. Kids are resilient and are able to adapt faster than us. I did write each one a letter prior to surgery, but a fellow scolio sister on here told me to rip it up and only have positive thoughts, so that's what I did and now am glad about that.

                Tamena
                Diagnosed at age 12 with a double major curve

                Braced till age 15

                SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

                Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

                Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

                Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

                Comment


                • #9
                  Hi and welcome,

                  Congratulations on setting the date - that is the most difficult part and you're done with it! Now it's time to get busy with planning and keep worries away.

                  In addition to freezing meals, buy a lot of non-perishable goods such as paper-towels, toilet paper, soap, detergents etc. It would be one less thing for your caregivers to worry about. Get a long-handle sponge - you would need it to wash your legs so that you don't bend. You may want to buy a shower chair. Put your clothes in the upper drawers, switch with your husband if need be. Get a few front-closure bras, put your make-up and mirror on some high chest of drawers so that it's easy for you to put it on without leaning forward. Buy some books, download games, if you have a TV in your bedroom - great.

                  Get in the best physical shape you can. It's great that you're doing yoga - it will help you to be a pro at log-rolling. At least this is how I felt (I did yoga too) - I didn't have any problems getting in and out of the bed by doing log-rolling and adopted quickly to new ways to move and do things. Plus, yoga really calmed me down.

                  Everybody takes different time to recover and you can't predict how long it will take you. After reading a lot of posts on this forum, I thought that I would be still quite weak, depressed and limited at four months and I didn't not expect complications because I was in good health. It turned out to be the opposite - I had some unpleasant complications that resulted in additional surgery (abdominal hematoma) and 18-days spent in two different hospitals. It is not typical, but things happen and I was really bummed at the time. Now, four months out, I walk four miles a day at a speed 3 mph so that I can get my heart rate up for some cardio and do a lot of physical therapy. I spend three hours a day, every day, walking and exercising. I feel great, happy and pain free with some occasional aches that could be relieved with tylenol. I am in the best physical (and cosmetic!!!) shape that I've been in many years and I truly enjoy my recovery now.

                  So, my advice is to prepare for the worst and hope for the best. Best of luck to you and ask all the questions you have.
                  Last edited by Irina; 07-22-2013, 07:10 PM.
                  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

                  Comment


                  • #10
                    Another note

                    What can I expect before the surgery and are there things anyone can recommend to do to prep in advance and make it easier on my family? The hospital will be about 40 minutes way from our home. Thanks for your input and advice. Its really nice to have some support from others who have gone through this or are planning to.[/QUOTE]

                    My drive was approximately the same distance too and I was so fearful of the drive home. I felt the bumps closer to home, but only the last 10 mins or so. Bring lots of pillows!! I did not fit into my van. I kept hitting my head! I am 5'9, now 5'10. So it can be tricky! It is still a problem we giggle about.
                    I also looked deeply into my nurses eyes and asked her to make sure I would not feel the drive home. She was such a caring nurse. Make sure your meds are called in to or taken in right away so when you are home and ready for your next dose you will have them.

                    Search and search on this site everything you can think of. You will truly find so much valuable information. Everyone is different but my opinion was I would have rather been prepared then left struggling. (I used a shower chair, still do to shave, toilet lift, only needed my walker for one day, WISH I had a reacher, have an adjustable bed with many pillows and my shower seat doubles as a bench to get ready in the morning).

                    God bless you! PS: as a previous librarian, you can even find books to talk to kids about surgery so it is not so scary for them.

                    *Jen
                    *Jen
                    Fusion surgery with Dr. Chang May 7, 2013
                    Pre-T:50 L:48
                    Post-T:20 L:0
                    Degenerative disk disease through spine and neck with bulging disks as well. Spinal cord deformity in the area of C5-6.
                    {On the road to a lifetime of forever with a back not holding me down!! Vacations, playtime with the kids, adult excursions! Life is moving forward not holding me back }

                    Comment


                    • #11
                      Thank you all for your support, advice and encouragement. My son is 6 and my daughter is 13 and is already like a little mommy so I think she will be very helpful. I am going to take everyone advice and try to do as much as possible in advance. I will have some help from my parents as well, but they live about 40 minutes away. I know there are a lot of unknowns and everyone's case is different but I am curious about the time frames for things like being able to cook simple meals, do laundry, driving, shopping, and going back to work. I love my job (shocking but true! ) and hope to get back as quickly as possible, at least part time. I can probably work from home part time as well. Does 6-12 weeks sound reasonable? My doc told me when I got off the meds I could drive. How long did that take most of you?

                      Tamena- thanks for your suggestions about taking the kids to the hospital. I know they will want to come visit but I understand what you are saying. I have never even been in the hospital besides having kids so I'm not even really sure what to expect from this surgery but if I am all hooked up to things and looking terrible, I don't want to scare them.

                      Comment


                      • #12
                        Originally posted by jworth View Post

                        Tamena- thanks for your suggestions about taking the kids to the hospital. I know they will want to come visit but I understand what you are saying. I have never even been in the hospital besides having kids so I'm not even really sure what to expect from this surgery but if I am all hooked up to things and looking terrible, I don't want to scare them.
                        Well, every surgery is different. I woke up with chest tubes, cath, spinal cath, oxygen, and the normal heart/oxygen level patches. Other than giving birth I had never been in the hospital either.

                        Driving is the tough part, even for short fusions because you become aware of how much you were used to twisting to drive. You learn how to adjust, but it is a slow process.

                        I too love my job! I am a PA for a podiatrist and love my patients which is one reason I rushed back at two months post-op, but I do not recommend that. Take your time healing and listen to your body. It will tell you what to do.

                        Tamena
                        Diagnosed at age 12 with a double major curve

                        Braced till age 15

                        SSBOB T12-L2 Anterior age 34. (October 22,2012) Dr. Robert Gaines Jr. ( Columbia, MO)

                        Revision Surgery T2-Sacrum with Pelvic Fixation Prosterior age 35 (November 13,2013) Dr. Michael Kelly (St. Louis, MO)

                        Revision Surgery L4/L5 due to BMP Complication age 36 (November 20,2014) Dr. Michael Kelly (St. Louis, Mo)

                        Revision Surgery due to broken rod scheduled for October 19, 2016 with Dr. Michael Kelly (St. Louis, MO)

                        Comment


                        • #13
                          Originally posted by jworth View Post
                          Thank you all for your support, advice and encouragement. My son is 6 and my daughter is 13 and is already like a little mommy so I think she will be very helpful. I am going to take everyone advice and try to do as much as possible in advance. I will have some help from my parents as well, but they live about 40 minutes away. I know there are a lot of unknowns and everyone's case is different but I am curious about the time frames for things like being able to cook simple meals, do laundry, driving, shopping, and going back to work. I love my job (shocking but true! ) and hope to get back as quickly as possible, at least part time. I can probably work from home part time as well. Does 6-12 weeks sound reasonable? My doc told me when I got off the meds I could drive. How long did that take most of you?

                          Tamena- thanks for your suggestions about taking the kids to the hospital. I know they will want to come visit but I understand what you are saying. I have never even been in the hospital besides having kids so I'm not even really sure what to expect from this surgery but if I am all hooked up to things and looking terrible, I don't want to scare them.
                          I was driving at 4 weeks but did not feel totally comfortable until 6 weeks. I was very stiff which made it hard to check my blind spot, I had freeway driving to do.

                          My kids came to see me over the weekend when I was to be released so I was unhooked from everything and pretty lucid. But also keep in mind mine were much older. They also were wanting to be there from day one (which I was not having) but I wanted them to be apart of my coming home.

                          I started doing light household duties like dishes, cooking, dusting and anything I could do without bending or lifting at 2 weeks. At my 6 week checkup my doctor did NOT want me doing laundry which I had been doing. It was fine as long as I was not carrying the basket. So we rigged a rope so I could drag the basket from the laundry room. Even with two capable children, I am stubborn!

                          I am not sure if I would have been able to return to my job (elementary school librarian-retired) as it would require a lot of bending and I still get tuckered out quickly. But I have read many have been able to return to work as early as 6-10 weeks. It will depend on your doctor as well. I highly recommend you start part time in case you need it and you can always go in full time once you are ready. May only take a week.

                          The first week home was the hardest for me. I needed ALL the help I could get. And it was hard because like you, I am very independent and hate asking for help. But you need to allow your body to heal. You do not want to go through this major surgery and then mess it up because you jumped back into things too quickly. Allow yourself the time to rest and heal! Advice passed down from the 'greats.'

                          Best wishes
                          *Jen
                          Fusion surgery with Dr. Chang May 7, 2013
                          Pre-T:50 L:48
                          Post-T:20 L:0
                          Degenerative disk disease through spine and neck with bulging disks as well. Spinal cord deformity in the area of C5-6.
                          {On the road to a lifetime of forever with a back not holding me down!! Vacations, playtime with the kids, adult excursions! Life is moving forward not holding me back }

                          Comment


                          • #14
                            Originally posted by jworth View Post
                            I know there are a lot of unknowns and everyone's case is different but I am curious about the time frames for things like being able to cook simple meals, do laundry, driving, shopping, and going back to work. I love my job (shocking but true! ) and hope to get back as quickly as possible, at least part time. I can probably work from home part time as well. Does 6-12 weeks sound reasonable? My doc told me when I got off the meds I could drive. How long did that take most of you?
                            First meal I cooked was an omelet with ham and tomatoes at three weeks. I started making other basic meals like fried potatoes at four weeks, but it would totally exhaust me. The only way I could handle a simple meal was to brake it in several parts - peel potatoes, rest, slice them, rest, cook and then eat if you're still able to breath :-)

                            Can't remember laundry - two months may be? My husband did all the laundry. Do you have a front loading washer and dryer? That would be helpful. Also, use your grabber while doing laundry.

                            You can drive when you're off narcotics. I was on narcotics for almost three months, but I had a big surgery (anterior/posterior) with a complication, which caused an additional surgery, and that's probably why it took me so long. You might be very different.

                            Regarding going back to work at 6 weeks - it doesn't sound realistic to me. I think an average for people going back to work is 3-4 months. I read testimonials of people going back to work at 8-9 weeks, but they were saying that it was very hard. If you can only afford it financially and insurance-wise, please take at least 3 months off. You will have your whole life to do the job you love, but you really need to put yourself first after the surgery and take your time to heal.
                            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

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