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  • Crystal's Surgery Journey....

    Hello,
    I have been reading everything and anything I can on this forum and want to start out saying what a blessing all of you are. I have been toying with the idea of posting my position or just keeping it to myself, and have finally got up the courage to begin my own thread. I think that it will be one of the best decisions I have made as you guys and gals are just awesome. What better people to share this journey with than those have or are experiencing one similar? Besides, I truly believe in the power of prayer, and this way, I can have prayers from others =)

    I was diagnosed with Scoliosis in 1985. I was accepted at the Shriner's Hospital and wore a brace for a few years. Shortly before I turned 18 I was set to have a spinal fusion done by them. I donated 2 pints of blood, quit my job, and did all of the preops etc. The night before my scheduled surgery, they sent me to have an MRI done, and for whatever reason they decided against doing the surgery at the last minute. I had my mind on other things, and don't recall why they made that decision, and have been regretting not keeping track of why ever since. By the time I requested my medical records from them, it was too late, they didn't have them any longer. My mom who was with me at the time, didn't recall why either, and has recently passed away (5/30/14), so I can't ask her anymore.

    I have tried to not limit myself because of my disability, but instead have worked full time since I graduated from high school. Unfortunately, some of the jobs that I have performed have been extremely physically intensive and probably things that I shouldn't have done, but when you don't have a college degree, you do what you have to to make a living. As the years pass by, my pain and symptoms have worsened to the point that my husband finally convinced me to begin to see a doctor about my back. Mind you, I went years without seeing anyone about my back, just took Doan's and Ibuprofen when I needed to. I also have PTSD and severe depression due to a traumatic childhood and previously abusive marriage and relationships. A couple of years ago, I had to quit working as between my physical pains and mental issues I could no longer hold down a job. When I first started seeing my dr, I didn't have any insurance and wasn't working. He referred me to an orthopedic surgeon who referred me OHSU. Well, OHSU no longer accepts low income patients, so I could go no further until I got insurance. I finally got insurance and got an appointment at OHSU 6 months out. I have met with Dr. Hart at OHSU twice, and I do think he is a good surgeon. Unfortunately, because of my mental issues, he is going to talk with my therapist before we can discuss scheduling a surgery. I get that, I realize how intense this surgery is, and that you have to be emotionally ready for it. Basically, my pain has become debilitating and I am trying to decide if I should have a spinal fusion done. My Dr says I need Posterior from T4-S1 and Anterior from L5-S1 and it will all be done in one surgery. On a scale of 1-10 with 1 being easiest, my surgery rates a 9!!! I just have so many questions and thoughts running through my head though.....

    How do you know that you are making the right decision (to have surgery or not have surgery)? How do you decide when the right time is?

    I will sign off for now, and thank each and every one of you in advance for any advice & support you can lend.
    Last edited by hdsluckygirl13; 11-12-2014, 01:37 PM.
    Hugs,

    hdsluckygirl
    hdsluckygirl@gmail.com

  • #2
    Hi Crystal,

    I can't answer a lot of your questions but wanted to welcome you to the forum. For myself, I knew it was time to consider surgery again as I was having increasing problems and dragging myself to work and being functional was getting so difficult. It was certainly a quality of life issue too, as I am feeling so diminished in the things I can do now vs what I want to do. But also an economic decision as I am still a ways out from retirement age and need the income for a secure future.

    I am fortunate in that insurance is not an issue, just needed to find the right doc for me. I had a doc in mind based on the reputation of the facility and saw him a few times and was ready to cancel my appt with another doc for a second opinion because I thought #1 was a good choice, but intellectually, I knew I should talk to somebody else, if only to learn more about the procedure.

    I'm so glad I kept the appt with doc #2. It was obvious he did a lot more of this surgery and I felt much more comfortable with his plan. I am now scheduled for Jan 13 & 15 for both anterior and posterior and am completely at peace with doing this.

    I don't know your age but the one thing that could have cancelled my surgery was the result of the DEXA scan. He told me that if the result was less than .8 that he would not do the surgery. I came back at .87, which is in the osteopenia range but OK for surgery. You can bet I'm taking Ca + vit D now! Also trying to walk as much as I can.

    Explore your options and gather information. When everything clicks, you will know it is the right time.
    Before 39* lumbar at age 18, progressed to 74* lumbar and 22* thoracic age 55
    ALIF Jan 13, 2015, PLIF Jan 15, 2015 with Dr William Stevens, Honor Health
    Fused T-7 to S-1 with pelvic fixation

    After 38* lumbar

    Xrays
    Before: http://www.scoliosis.org/forum/attac...7&d=1414268930

    After: http://www.scoliosis.org/forum/attac...6&d=1424894360

    Comment


    • #3
      Welcome to the group! I have to say only you can decide if surgery is the right thing for you. Living in pain is tough and yes this surgery is one of the most emotional and physically straining thing upon your body, so make sure you have one amazing support group to help you through. You will find a lot of support from the individuals on this site.

      Good luck through your journey!
      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


      • #4
        hi crystal...
        i sent you a private message...
        best of luck...

        jess...and Sparky

        Comment


        • #5
          Crystal,
          Scheduling surgery was one of the most difficult decisions I have ever made. I had a tremendous amount of faith in Dr. Lenke and his recommendation for surgery and tried not to listen to some friends who thought it was the worst possible decision I could make since I was active and in little pain. I still doubted my decision constantly during my 13 month wait for surgery but felt that at my age (59) that I shouldn't postpone it.
          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


          • #6
            Crystal, welcome!

            Dr. Hart is just doing his job checking with your therapist. Don't get wigged out about him checking. He just wants to make sure that you will not have anything in the way of your recovery. He may send you to Dr. Carlson who is a psychologist on staff. He is an expert in "mindfulness". He is a very gentle man and I think that you will like him.....if he sends you, that is!

            Congratulations on making the next step to better health and less pain.

            Susan

            PS: I liked Dr. Hart a lot and think that he will take great care of you!
            Last edited by susancook; 11-07-2014, 12:56 AM.
            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
              Originally posted by Lizardacres View Post
              Hi Crystal,

              I can't answer a lot of your questions but wanted to welcome you to the forum. For myself, I knew it was time to consider surgery again as I was having increasing problems and dragging myself to work and being functional was getting so difficult. It was certainly a quality of life issue too, as I am feeling so diminished in the things I can do now vs what I want to do. But also an economic decision as I am still a ways out from retirement age and need the income for a secure future.

              I am fortunate in that insurance is not an issue, just needed to find the right doc for me. I had a doc in mind based on the reputation of the facility and saw him a few times and was ready to cancel my appt with another doc for a second opinion because I thought #1 was a good choice, but intellectually, I knew I should talk to somebody else, if only to learn more about the procedure.

              I'm so glad I kept the appt with doc #2. It was obvious he did a lot more of this surgery and I felt much more comfortable with his plan. I am now scheduled for Jan 13 & 15 for both anterior and posterior and am completely at peace with doing this.

              I don't know your age but the one thing that could have cancelled my surgery was the result of the DEXA scan. He told me that if the result was less than .8 that he would not do the surgery. I came back at .87, which is in the osteopenia range but OK for surgery. You can bet I'm taking Ca + vit D now! Also trying to walk as much as I can.

              Explore your options and gather information. When everything clicks, you will know it is the right time.
              Thank you for the warm welcome, and advice. It truly helps to not feel alone right now. I especially like the "when everything clicks, you will know it is the right time"
              Hugs,

              hdsluckygirl
              hdsluckygirl@gmail.com

              Comment


              • #8
                Originally posted by tae_tap View Post
                Welcome to the group! I have to say only you can decide if surgery is the right thing for you. Living in pain is tough and yes this surgery is one of the most emotional and physically straining thing upon your body, so make sure you have one amazing support group to help you through. You will find a lot of support from the individuals on this site.

                Good luck through your journey!
                Tamena
                Thank you so much for the kind words. Yes, this group is amazing. Reading about everyone's experiences definitely begins to make each of you feel like family =)
                Hugs,

                hdsluckygirl
                hdsluckygirl@gmail.com

                Comment


                • #9
                  Originally posted by golfnut View Post
                  Crystal,
                  Scheduling surgery was one of the most difficult decisions I have ever made. I had a tremendous amount of faith in Dr. Lenke and his recommendation for surgery and tried not to listen to some friends who thought it was the worst possible decision I could make since I was active and in little pain. I still doubted my decision constantly during my 13 month wait for surgery but felt that at my age (59) that I shouldn't postpone it.
                  Phew, hearing you say these things sure makes me feel better. I keep thinking, do I schedule it sooner so I just get it done and the process of healing beginning or do I put it out for a year only to have to dwell on it for that long? Your pictures have helped as well, thank you more than you know.
                  Hugs,

                  hdsluckygirl
                  hdsluckygirl@gmail.com

                  Comment


                  • #10
                    Update and thank you....

                    Originally posted by susancook View Post
                    Crystal, welcome!

                    Dr. Hart is just doing his job checking with your therapist. Don't get wigged out about him checking. He just wants to make sure that you will not have anything in the way of your recovery. He may send you to Dr. Carlson who is a psychologist on staff. He is an expert in "mindfulness". He is a very gentle man and I think that you will like him.....if he sends you, that is!

                    Congratulations on making the next step to better health and less pain.

                    Susan

                    PS: I liked Dr. Hart a lot and think that he will take great care of you!
                    Thank you, I was hoping to hear from you! I am just halfway through your story, and let me just say that you are an inspiration to me. I appreciate your candidness on all you have gone through. I just got a call yesterday from my Therapist, he said that he feels Dr. Hart feels optimistic about my mental state, then Dr. Hart's office called and asked if I was ready to set a date! Yikes!!!! I basically had to say that I still have some things to take care of before I can commit to a date, and lots of questions that I need answered first. They were ok with that. When you have time and feel up to it, I would love your thoughts/input on Dr. Hart and OHSU. Any information is helping me to alleviate all the fears and anxiousness. Thanks so much!

                    If anyone wants to put in their thoughts on Dr. Hart and/or OHSU please do. Knowledge to me is good =)
                    Last edited by hdsluckygirl13; 11-07-2014, 09:47 AM.
                    Hugs,

                    hdsluckygirl
                    hdsluckygirl@gmail.com

                    Comment


                    • #11
                      I love Dr Hart

                      Dear Crystal,

                      I have been a pt of Dr Hart's for about 6 years and I really like him. Here is a link to another thread asking about him, with my detailed comments. I am now 5 years out from the original surgery with him and doing very well.

                      http://www.scoliosis.org/forum/showt...highlight=hart

                      Please don't hesitate to contact me through posting or private message if you have any questions I can answer about my experiences.

                      p.s. awaiting surgery is the worst…….If you need it and have committed to your surgeon, I would recommend going for it. That's just me!

                      Good luck,
                      Gayle, age 50
                      Oct 2010 fusion T8-sacrum w/ pelvic fixation
                      Feb 2012 lumbar revision for broken rods @ L2-3-4
                      Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


                      mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
                      2010 VBS Dr Luhmann Shriners St Louis
                      2017 curves stable/skeletely mature

                      also mom of Torrey, 12 y/o son, 16* T, stable

                      Comment


                      • #12
                        Originally posted by leahdragonfly View Post
                        Dear Crystal,

                        I have been a pt of Dr Hart's for about 6 years and I really like him. Here is a link to another thread asking about him, with my detailed comments. I am now 5 years out from the original surgery with him and doing very well.

                        http://www.scoliosis.org/forum/showt...highlight=hart

                        Please don't hesitate to contact me through posting or private message if you have any questions I can answer about my experiences.

                        p.s. awaiting surgery is the worst…….If you need it and have committed to your surgeon, I would recommend going for it. That's just me!

                        Good luck,
                        I am glad to hear it, I will send you a pm in a moment as I do have some questions about him. Nice to know that you have a long history with him, helps make me feel better. I am ready, just have to get my aftercare ready and lined up, and mostly income... Once that stuff is figured out I can set a date =)
                        Hugs,

                        hdsluckygirl
                        hdsluckygirl@gmail.com

                        Comment


                        • #13
                          Just one of those days....

                          Ok, so I am just frustrated to no end. My poor husband was in a major accident years ago and suffers from short term memory loss and chronic migraines that for years we have tried to find him relief to no end. We try to talk about my surgery and discuss options, etc, but as soon as he gets a headache it is too difficult for him to comprehend what I am trying to say. Just makes me cry, I feel so alone and just don't know where to turn to. I don't want to leave him out of my thoughts/ideas, but darn it, I feel like there is just never a good time to talk about everything that needs to be discussed for this huge surgery. Arghhhhh!!! Ok, thanks for listening...
                          Can anyone tell me what all is needed as far as aftercare from our spouse? He is the only family that I have and the only person that I really want around me during the recovery faze, but I don't want to burn him out. I think it would alleviate allot of his fear and stress to know in advance what all he will need to be doing for me=) Thanks everyone, sorry to be a downer. I know that my story is far from as bad as it gets, and I feel terrible when I get like this.
                          Dr. Hart's PA was supposed to call me today to go over my list of questions. I tried to call several times, and never got a call, despite having a phone appointment scheduled at 1pm. Wow, am I just not meant to have this Dr? Ugh....
                          Hugs,

                          hdsluckygirl
                          hdsluckygirl@gmail.com

                          Comment


                          • #14
                            Originally posted by hdsluckygirl13 View Post
                            Ok, so I am just frustrated to no end. My poor husband was in a major accident years ago and suffers from short term memory loss and chronic migraines that for years we have tried to find him relief to no end. We try to talk about my surgery and discuss options, etc, but as soon as he gets a headache it is too difficult for him to comprehend what I am trying to say. Just makes me cry, I feel so alone and just don't know where to turn to. I don't want to leave him out of my thoughts/ideas, but darn it, I feel like there is just never a good time to talk about everything that needs to be discussed for this huge surgery. Arghhhhh!!! Ok, thanks for listening...
                            Can anyone tell me what all is needed as far as aftercare from our spouse? He is the only family that I have and the only person that I really want around me during the recovery faze, but I don't want to burn him out. I think it would alleviate allot of his fear and stress to know in advance what all he will need to be doing for me=) Thanks everyone, sorry to be a downer. I know that my story is far from as bad as it gets, and I feel terrible when I get like this.
                            Dr. Hart's PA was supposed to call me today to go over my list of questions. I tried to call several times, and never got a call, despite having a phone appointment scheduled at 1pm. Wow, am I just not meant to have this Dr? Ugh....
                            Crystal

                            Just wanted to welcome you to the forum....

                            If you have read my posts, you know that I’m single and did my recovery alone as did a few members here....Basically, I had all sorts of friends and neighbors and nurses coming over to my house every day, but scoliosis surgical recovery is all about YOU and not what anyone else is going to do for you.....I would say that this is 99% true because other than any mental or emotional support, there is not much anyone can do for you if you are in pain....We learn to adapt and think positive in our recoveries and this is extremely important while we heal. Having faith plays a crucial role. I knew that things were going to be alright from the start.....I just knew.

                            It’s a time when we have to be strong, stay the course, know what’s happening to our bodies, and be patient. We are not allowed to bend, twist or lift for many many months, and we learn to cope without having others around because they might not be around every time something needs to be lifted up off the floor, or every time we want to eat. In other words, being self sufficient is pretty important. I would grocery shop and carry the food into the house 2 cans at a time and not lift the bags.

                            Discussing and preparing our inner circle or loved ones and family members is crucial in that at least they understand that this will be a major surgery that will take years to fully recover from. At least they know what they can do for you, or at least be there when your having a bad day. There will be bad days, the immediate recovery or first few weeks can be pretty hard. Recovery is a See-Saw of up and down days that happens for months on end, but what happens after time is that we heal and have more good days than bad. As time passes, things get better, and there are less bad days.....Sleeping can be hard, and we take many cat naps. I was cat napping and tired from fatigue for 2 years.....

                            Discussions with others about scoliosis surgery can grow old......it does.....and while we want to get our points across, we have to be careful that we don’t kill our spouses or friends with “scoliosis” data. They can only handle so much.....so be patient. That’s why this forum is here.

                            There will be a lot of anxiety with all of this, I think that the most valuable thing I did was learn how to breathe deep. In hard, hold for a few, exhale slowly......Deep breaths, multiple times. Go for outdoor walks......This was printed on my post care paperwork in bold print stressing my walks be done OUTDOORS only.....Being the hiker and outdoor person that I am, I completely understood and agree. Walking is extremely important in our recoveries, short walks often throughout the day.

                            Scheduling conflicts and mishaps do happen with scoliosis surgeons......after all, they are very busy people. Breathe and wait, his PA will call you in time.

                            Hang in there, your stronger than you think.
                            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


                            • #15
                              Welcome, Crystal!

                              You're right ... This is the place you need to be for education, encouragement and prayer! (And thank you for your prayers, I'm almost 2 weeks post-op.)

                              Although friends & family wanted to discuss my surgery, they just didn't get it. It began to seem like scoliosis had become my identity. My doctor's nurse had a full size, clear "bone" model that showed all the hardware. I asked her for photos. Once I sent those to friends & family, they seemed to 'get' how much more involved & invasive the surgery would be.
                              I tried to post the pics online, but I couldn't do it. I'll try again.
                              Sending prayers your way.
                              Peg
                              61 yrs old
                              75 degree lumbar curve with thoracic kyphosis
                              T3 - S1 surgery with Dr. Buchowski in St. Louis, on 10/27/14
                              Working on healing in Columbus, Ohio!

                              Comment

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