Announcement

Collapse
No announcement yet.

New here. Terrified about surgery!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • New here. Terrified about surgery!

    Hello everyone!,
    This is an incredible forum I'm sooo glad I found it!
    This is my story: Diagnosed with scoliosis at the age 12. Wore a milwaukee for about a year.
    Now I'm 30 years old and my scoliosis progressed to 95* thoracic and 70* thora-lumbar.
    I have pains now and then, but I can continue my life if I take an Ibuprofen.
    I thought It was about a time to check how my back was doing, and I went to see DR. Pashman here in Los angeles. He told me that my curvatures are huge and I need surgery. Open anterior and posterior. Every single person tells me DON'T DO IT. So I have no idea what to do. I need help. I know my spine is very deformed, but the pains are not super great. So If I do this is, It is to correct and to prevent pains in my future. I'm scared because I heard that people have pain after the surgery. So If I don't have great pain right now, and I have pains after I know I'm going to regret it.
    My surgery is schedule for sept. 3rd. and I'm thinking of getting a second opinion, but with an almost 100* curve I know what they going to say.
    I'm soooo scared.
    Scoliosis Diagnosed at age 12. Wore Milwaukee brace for 2 years.
    Now age 32
    Pre-op curves: C86-T98-L37
    Surgery date: 12/6/2010 (anterior) 12/10/2010 (posterior)
    Fused T2 to L5 with thoracoplasty.
    Post-op curves: C48-T47-L17
    Dr. Robert Pashman
    Cedars Sinai, Los Angeles, CA
    Before and after xrays :
    http://www.scoliosis.org/forum/attac...5&d=1292969215

  • #2
    Hi Pilar...

    You're in a tough spot. Assuming that the curves are progressing (most large curves are progressive, but not all), a 95 degree thoracic curve has to be stopped, or it will most likely start causing life threatening problems eventually. Unfortunately, I can guarantee that the surgery is going to cause pain, in the short term. In general, most people curse their decision to have surgery for a few months following surgery. Unfortunately, I can't really find a study that shows outcomes for people such as yourself. You should ask Dr. Pashman to talk about outcome statistics for younger adults with large thoracic curves. My sense, in general, is that far more people don't have long term surgical pain.

    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


    • #3
      Thanks so much for getting back to me, Linda!
      I know I'm in a tough spot... That's why I am so hesitant about all these.
      If I have pains right after the surgery, that would be fine. But what I am afraid of is to have chronic pains for life due to the surgery. My family and friends say that I don't need it if I don't have problems from it, and obviously deformity is not enough reason for it. I asked Dr. Pashman how is my future and quality of life going to be if I don't get this surgery? And he said "that sooner or later I will need it. That I might as well do it now that I still have my youth going for it..." So I don't know...
      People said that I should be skeptical of doctors ( surgerons)because they just want to operate and make $$$$.
      I am in a pickle here.
      thanks for your reply.
      pilar
      Scoliosis Diagnosed at age 12. Wore Milwaukee brace for 2 years.
      Now age 32
      Pre-op curves: C86-T98-L37
      Surgery date: 12/6/2010 (anterior) 12/10/2010 (posterior)
      Fused T2 to L5 with thoracoplasty.
      Post-op curves: C48-T47-L17
      Dr. Robert Pashman
      Cedars Sinai, Los Angeles, CA
      Before and after xrays :
      http://www.scoliosis.org/forum/attac...5&d=1292969215

      Comment


      • #4
        Pilar,

        Welcome to the forum!

        Its ok to be scared, I think all of us were scared before surgery, and there is pain, no surgery is without pain. However you have to look at long term as well. Does your dr think this is just going to keep on getting worse? If so the sooner you do the surgery the better.

        One thing you might want to do is exercise before surgery. It seems that the better shape you are in before the surgery the easier the recovery. Thats no guarentee, but it seems to help. Exercise after the surgery, is important as well. Most likely you'll go through some physical therapy afterwards to show you what to do, and just keep up with that.

        Do you know from where to where along your spine the dr is going to fuse? Thats a determination on long term issues as well. Twenty five years ago I was fused from T1-L4, and I have no neck issues at all, but I do have issues below my rods. I only have a few vertebrae that did all my movement for 25 years and I now have pain issues. I was also never given any exercises to keep up with either, which would have helped, plus my choices of work didn't help. (Standing all day in some jobs with little movement, plus construction. ) I don't regret my surgery one bit though.

        Do the people who say don't do it actually know anything about the issues though? Its one thing to be well meaning, but if they are uninformed that can be very dangerous. So I'm glad you came here for more answers. This is a great site filled with lots of great info and great people.

        Keep asking questions and we'll do our best to answer them.

        Brad
        Surgeries July 26th & August 3rd 1983 (12 years old)
        Still have 57 degree curve
        2 Harrington rods
        Luque method used
        Dr David Bradford
        Twin Cities Scoliosis Center
        Preop xray (with brace on)
        Postop xray

        Comment


        • #5
          Hi Pilar...

          Most large curves progress at approximately 1-1/2 degrees per year. That's 15 degrees in 10 years, so by the time you're 50, your thoracic curve could realistically be 125 degrees. At that size, your quality of life will probably be pretty grim.

          It's not surprising that your thoracic curve doesn't cause pain, but it is a little surprising that your lower curve doesn't. It wouldn't surprise me at all, to find that your lower curve starts causing pain in the next 5-10 years.

          I think many of us have had the issue of family and friends telling us to avoid surgeons. I avoided seeking help for a long time because of it. The best way to shut them up might be to get a second opinion. You'll find a list of scoliosis specialists here:

          http://srs.execinc.com/edibo/PublicDirectory

          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


          • #6
            Oh my god guys! you have no idea how much I appreciate your replies!
            I actually do have pains once in a while and it is all my lower back. My major curve doesn't hurt at all. My doctor actually said that all my movements right now are all lumbar. He also said that it will be the same after the surgery. I don't know yet how many vertebrate are going to be fused. I have my last appointment before surgery with him next week. We are going to go through all that in that appointment. In regards to a second opinion, Yes I will seek a second opinion mostly to ease my family's doubts. I know I have to do it for myself, but I also know that any doctor will tell me to go ahead with the surgery. I notice that people get surgeries when they have a 45* curves, so mine it is obviously a candidate. I do think about the long term effects that's why I consider this surgery. It doesn't hurt now, but I'm afraid of the future. It is hard to make a decision based on what will it happen?
            I'm afraid of something going wrong during surgery (you know, all the risks) associated with it. I don't know if it is worth it, especially because I don't have major problems right now.
            Thanks.
            P.
            Scoliosis Diagnosed at age 12. Wore Milwaukee brace for 2 years.
            Now age 32
            Pre-op curves: C86-T98-L37
            Surgery date: 12/6/2010 (anterior) 12/10/2010 (posterior)
            Fused T2 to L5 with thoracoplasty.
            Post-op curves: C48-T47-L17
            Dr. Robert Pashman
            Cedars Sinai, Los Angeles, CA
            Before and after xrays :
            http://www.scoliosis.org/forum/attac...5&d=1292969215

            Comment


            • #7
              Hi Pilar and welcome to the forum. Most of us felt the same way as you, pre-surgery, scared and confused. This forum will be a great help as there are many here with lots of knowledge and experience to offer.

              Brad has a good point. "Do the people who say don't do it actually know anything about the issues though?" I had the same thing. People who knew nothing about scoliosis told me to avoid the knife at all cost. Surgeons just want to make big $$$. The pain is not worth it (from a nurse who had orthopedic experience in the 80s) and it won't prevent problems in the future.

              I'm glad that in the end, I listened to my surgeon! My curve barely changed from age 13 - 50 but then it took off. I had a 66 degree curve in June last year and by surgery time, March this year, it had increased to 68. So I could see where it was headed.

              The pain is usually temporary. The younger you are when you have the surgery, the easier the recovery, or so I am told. My surgeon also told me that those who have little or no pain, tend to have a better outcome. Like you, I did not have a lot of pain prior to surgery and since I came home from hospital, I've had almost no pain and am doing fine. (Just try to avoid withdrawals from meds, if at all possible!)

              Good luck!
              Surgery March 3, 2009 at almost 58, now 63.
              Dr. Askin, Brisbane, Australia
              T4-Pelvis, Posterior only
              Osteotomies and Laminectomies
              Was 68 degrees, now 22 and pain free

              Comment


              • #8
                Pilar,

                I had surgery at 46 yrs old, when both my curves were 66 degrees. I only started having bad lower back pain in the last year prior to my surgery. Before that, I felt like you--I could manage taking motrin once in a while. I totally understand your fears, I had them too. No one can promise you what results surgery will bring, but in my case, the short term pain wasn't as bad as I thought. I imagined much much worse for a longer period of time. In my case I was off pain meds a little after 2.5 months.

                The people who say DON'T DO IT usually are just horrified at the thought of this surgery, and don't know anything about your condition. They don't know that if you do nothing and progress as Linda described you could be in bad shape in your early 40's. I promise that eventually, SOME, if not all, of your friends and family will come around as you get yourself educated, and then educate them. I was so upset when I finally made the decision to have surgery, started telling friends and I got that reaction. It really did hit me like a ton of bricks. Now, the same people are amazed at how well I function not even 8 months after surgery.

                Good luck in your decision making process. I know it's tough. Ask all the questions you think of here--it really helps.
                __________________________________________
                Debbe - 50 yrs old

                Milwalkee Brace 1976 - 79
                Told by Dr. my curve would never progress

                Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
                Pre-Surgury Thorasic: 66 degrees
                Pre-Surgery Lumbar: 66 degrees

                Post-Surgery Thorasic: 34 degrees
                Post-Surgery Lumbar: 22 degrees

                Comment


                • #9
                  Thanks so much for your words!
                  It is so comforting to know that someone out there understand my feelings.
                  My family and friends can see that I need surgery, but they are terrified of the thought of me going through some king of risk.
                  The decision is mine and only mine. I'm not afraid of the post-op at all, I know that they will be working on my muscles and spine, therefore, it will be some pain. I'm fine with that and I will deal with it. I'm just very very scared of paralysis or any other complications. I try not to think about the negative aspects, but it makes me so nervous.
                  It is hard to imagine myself without this deformity because I have been living with this since I was little girl.
                  I would like to know if anyone out there had a major curve like me (95* T and 70* TC)? and what was the outcome of the surgery?
                  Thanks thanks thanks
                  P.
                  Scoliosis Diagnosed at age 12. Wore Milwaukee brace for 2 years.
                  Now age 32
                  Pre-op curves: C86-T98-L37
                  Surgery date: 12/6/2010 (anterior) 12/10/2010 (posterior)
                  Fused T2 to L5 with thoracoplasty.
                  Post-op curves: C48-T47-L17
                  Dr. Robert Pashman
                  Cedars Sinai, Los Angeles, CA
                  Before and after xrays :
                  http://www.scoliosis.org/forum/attac...5&d=1292969215

                  Comment


                  • #10
                    Originally posted by pilar View Post
                    Thanks so much for your words!
                    It is so comforting to know that someone out there understand my feelings.
                    No matter how sympathetic friends and family are they never really know how it is. I know I am sooo glad I found this forum, even thou surgery was so long ago for me. Its nice to be able to share issues and feelings and laugh at some of the silly stuff.

                    It is hard to imagine myself without this deformity because I have been living with this since I was little girl.
                    You'll get over it. (and it will be a good thing) One thing you might want to do is before surgery have a picture taken of your bare back, and then one after surgery. Its a good reference point to see how much you have been straightened out. I've seen many pictures like that here and I wish I had one from when I was younger.

                    I would like to know if anyone out there had a major curve like me (95* T and 70* TC)? and what was the outcome of the surgery?
                    Thanks thanks thanks
                    P.
                    Well if you click on my link at the bottom of my post you'll find my pre and post op xrays. My preop xray is in brace, so not as curved over as I would be naturally. I don't know what my individual curves were exactly, but 110 and 115 degrees were talked about. As I've said previously I have no problems with having had my surgery. I needed it in a large way.
                    Surgeries July 26th & August 3rd 1983 (12 years old)
                    Still have 57 degree curve
                    2 Harrington rods
                    Luque method used
                    Dr David Bradford
                    Twin Cities Scoliosis Center
                    Preop xray (with brace on)
                    Postop xray

                    Comment


                    • #11
                      Hi Pilar....

                      I think if you break the decision down to the elements, it's not quite as daunting. Here's a start for you:

                      Progression: If your curve has progressed at least 10 degrees in the last 5-7 years, it will almost certainly continue. If your curves have progressed, you will eventually be faced with the decision of surgery vs. total disability or even death. And, at some point, even if you don't have pain, you will probably start losing function. Also, progression can cause problems that might make you a poor surgical candidate.

                      Pain: While you don't have pain now, there's a high likelihood that you will have pain in the next 5-10 years. While you might be able to find an alternative that allows you to control the pain, it's not likely you'll stop the progression.

                      Timing: While there's no emergency, surgery at 30 is expected to be much easier than surgery at 40 or 50. And, if your curves are progressing, you can expect that you will get less correction if you wait 10 years to undergo surgery. There are other things to think about in terms of timing. For example, do you want to have children in the future? Do you have small children at home? Do you have someone who can help you for a few weeks when you come home from the hospital? Do you have good insurance today? Is there a chance that your insurance plan could be worse in the future?

                      Negatives: There's a long risk of potential complications. Complications can range from simple things like a loose screw, to severe complications including death. There's a possibility that the surgery will create pain that could be permanent. Anecdotally, adults who don't have pain going into surgery are generally less happy with their outcomes than those with a lot of pain.

                      Hope this helps.

                      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


                      • #12
                        Hello fellow Milwaukee brace wearer. Wasn't that fun? NOT! Although, I have to admit it was just something I did - I never thought of it as an optional thing I guess. Fortunately I grew up in a small town,althogh I was always self-conscious and still am to this day with my curve and how it makes us look.
                        I understand your worrisome state. You are one of the few people I have run across that actually has a higher numbered curve than me. All my doctor would tell me is that it's 80+ and I need surgery and if it hurts as bad as I say I need to be seeing a surgeon soon.
                        Hang in there - we brace wearers have to stick together.
                        I'm awaiting my first appt with Dr. Lenke in St. Louis in August. OMG that is a long time away!
                        And, if the outcome from surgery is better for those of us who are in pain - I'm got that covered!!!
                        Rita Thompson
                        Age 46
                        Milwaukee Brace wearer for 3 years in childhood
                        Surgery Mar 1st - 95 degree thoracic curve
                        Surgery by Dr. Lenke, St. Louis, MO
                        Post-surgery curve 25-30 degree

                        Comment


                        • #13
                          I have to agree with all of the posters above. I had to wait 6 months for my surgery and it gave me lots of time to prepare but also time to drive myself crazy with worry. I think that is very natural. I had sworn for 40 years I would never have surgery. I just kept progressing and by the last year and a half it was moving really rapidly. I was becoming totally scrunched down. By the time I had surgery I was at 91 and 62. So pretty close to yours.
                          As bad as mine was I had managed through how I dressed, exercise and chiro, etc. etc. to keep mine looking not too bad. Many thought I was crazy too since they said I can't see any problem. Without a top they would see it big time. Yes, the pain kept increasing and due to the degree of progression my long-term prognosis looked pretty bleak.
                          Also I agree with Brad on the exercise. I had always done lots of it anyway, but I ramped it way up to 1-1 and a half hours a day. I think that does help the healing process.
                          It's a tough surgery, no doubt about it. However, I decided the year plus of recovery was worth having lots more years where I could actually be out of pain and not be a crumpled old lady. I'm 10 weeks out from surgery and I'm almost 2 inches taller and look much straighter. I have sort of a leaning issue to the left which I hope will adjust eventually but my overall look is so much better. Good luck with all of this!! Janet
                          Janet

                          61 years old--57 for surgery

                          Diagnosed in 1965 at age of 13--no brace
                          Thoracic Curve: 96 degrees to 35 degrees
                          Lumbar Curve: 63 degrees to 5 degrees
                          Surgery with Dr. Lenke in St. Louis--March 30, 2009
                          T-2 to Pelvis, and hopefully all posterior procedure.

                          All was posterior along with 2 cages and 6 osteotomies.

                          Comment


                          • #14
                            Originally posted by pilar View Post
                            I would like to know if anyone out there had a major curve like me (95* T and 70* TC)? and what was the outcome of the surgery?
                            Pilar,

                            Have you checked out Dr. Pashman’s website that shows some patient outcomes? http://espine.com/adult-scoliosis-cases.htm Also, if you type his name in the search engine here, you will find some members who had surgery by him and were quite pleased with their outcomes.

                            Comment


                            • #15
                              Thanks everyone for your input!
                              I have my last appointment with Dr. Pashman this coming tuesday and I have lots of questions for him already. I hope I don't forget anything.
                              P
                              Scoliosis Diagnosed at age 12. Wore Milwaukee brace for 2 years.
                              Now age 32
                              Pre-op curves: C86-T98-L37
                              Surgery date: 12/6/2010 (anterior) 12/10/2010 (posterior)
                              Fused T2 to L5 with thoracoplasty.
                              Post-op curves: C48-T47-L17
                              Dr. Robert Pashman
                              Cedars Sinai, Los Angeles, CA
                              Before and after xrays :
                              http://www.scoliosis.org/forum/attac...5&d=1292969215

                              Comment

                              Working...
                              X