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  • Hi, I'm new here

    You all sound very positive here. I'm hoping some of it will rub off onto me.

    I am 57 y.o. and am scheduled for surgery March 10, 2009. T5-S1. I was diagnosed with Scoliosis at age 13 and offered surgery and 12 months in a cast. I begged my mother not to make me go through it and the Dr. agreed that it was pretty drastic and a "wait and see" might be reasonable. I had no progression, no pain, no symptoms whatsoever until my 50s. I noticed my "scoliosis shape" increasing and becoming noticeable. I also noticed I was losing height. So far, I have lost 6 cm. I still don't have pain, though I did have a ruptured disc in my lumbar area in 2000 and I now have osteoarthritis in that area. The worst symptom for me, is the rib hump which I loathe.

    I am very fearful of this surgery, my first surgery ever. Emotionally, I spiralled downward after seeing the Orth. Surgeon in June and I cancelled my original surgical date of September 16 and my doctor put me on anti-anxiety medication which has helped enormously. It still weighs on my mind but I can get on with life...but it's still 5 months out and I'm not sure how I will cope in that last month or so. I am a terrible sook, in fact, I think it's probably more a phobia because I've always been terrified of anything medical. But I know I must have this surgery to maintain my active, painfree lifestyle, because I've been very lucky until now.

    Cheers,
    Jen
    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

  • #2
    Hi Jen,

    Welcome. I can tell you that this last month is hard, but I'm getting through it. I try to stay positive, but if you've seen any of my posts, I do have my moments. I think for me the first month that I realized this was my future was the hardest, because it came out of the blue and hit me like a ton of bricks.

    All I can say is post your questions here and you will get great responses.

    Oh, and I don't know what a 'sook' is
    __________________________________________
    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


    • #3
      Welcome Jennifer! Of course, I am sorry you have a need to be here but I think it is a great place for support. My surgery is next week and we are about the same age. I am T10 to S1. I scheduled mine in June - wanted to wait until summer was over. It gets to be a long wait. I hope this site is beneficial to you as you go thru all kinds of emotions in this process.
      Nancy Joy

      Surgery- Posterior- Oct. 8th, 2008
      Anterior- Nov. 10th, 2008
      Age 54
      T10 to Sacrum
      Curve 65 degrees
      Very straight now!!!

      Comment


      • #4
        Hi Debbei and Nancy Joy, thank you for your welcome.

        I will be on the look out for both your recovery posts. The very best of luck to you both. I will be thinking of you on your surgery days.

        Debbei, a "sook" is a "cry baby", a "scaredy cat" and "nervous Nelly" all rolled into one.
        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


        • #5
          sunnyday

          Hi Jennifer,
          Welcome to the forum! I'm having fusion from T4 to sacrum later this month. Anterior on Oct.27 and Posterior on Oct. 30. I'm 57 also. I'm not terrified but am somewhat worried about whether I'm doing the right thing. But I've had four opinions. The first two orthopedic surgeons were colleagues who were going to share the work of my surgery ( so that's really just one opinion). The next opinion was a scoliosis specialist -- also an orthopedic surgeon-- and he will do my surgery. The most recent opinion came from a neurosurgeon. They all said I should have this surgery.
          I worry a little because the pain is not bad. Most of the people on the forum complain of severe pain. On the other hand, I can't walk more than a few blocks without aching, numbness, medium pain. Standing for more than ten minutes hurts, of course. My lumbar curve has gone from 35 to 53 in just four years so it's getting worse. The doctors seem convinced it will continue to get worse and I believe it will. The younger you are for surgery, the better, so I don't want to wait.
          I feel that most people i've talked to recently about various surgeries they've had, think that they waited too long and should have done it sooner. This is true even of the one person I know from church who had this exact procedure a year ago. Also, I never tried to fix my situation through exercise -- not that exercise can fix it. But it is amazing how many people try to tell you that exercise can fix this. Anyway, don't worry too much. Lot's of people have done fine with this surgery.l Also, the worse you let the curve get, the more difficult it is for the doctor to correct. Thanks to everyone who has posted; it's really helped me prepare for this. It's kind of a drag having to have such major surgery at this age but I just try to appreciate all the years I've had when it wasn't a problem.
          Best wishes. I'll try to keep you informed about how my surgery goes.
          ..........Stephanie

          Comment


          • #6
            Hi Jen,
            My story is similar to yours. I had surgery (T4-S1) Dec. of '06 at the age of 46. I too, hated my rib hump! Now it is completely gone-and I have no pain. I'm glad you found the forum- it was a lifeline to me before my surgery. Welcome!!
            Cathie

            Comment


            • #7
              Thanks sunnyday and bsprings. I believe it will be a big help to talk to people undergoing the same surgery as I am facing. I have been combing the internet looking for personal stories and luckily, stumbled across this forum. I look forward to hearing as much as possible about member's recoveries, even the bad stuff, because I think forewarned is, in a way, forearmed.

              I look forward to hearing how your surgery goes sunnyday, and wish you the very best of 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
                Hi Jen,

                Sorry you're having scoli problems, but great to have another Aussie on the boards - Welcome! I see you're on the GC - will you be having the surgery there or in BrisVegas? I have a 2nd revision surgery coming up in December, which will be done in Bris.

                I sometimes think that the lead-up to surgery is the toughest part - not know quite what to expect or how to prepare, trying to organise stuff, & having way too much time to mull over nasty possibilities...but, you (we!) WILL make it through, & the success rate of scoli surgery is pretty dang high. You'll see a lot of stories around the forums here about people in a lot of pain, having more than the one scoli surgery, etc., but don't forget that we are a very small number of patients - & people who have hugely improved quality of life & are able to just get on with life after surgery don't have a reason to seek out a support system like people who end up with problems. The surgery is a tough one, no pretending, but it is usually very successful

                You asked about recovery, so from my experiences with a lot of surgeries inc. 2 previous spinals....

                You'll be asked to fast (no food or drink) for at least several hours before surgery, & may be admitted to hospital the day before surgery. In the lead-up to admission, you'll probably have tests to check how well your lungs are functioning, the exact position of your spine, & so on - happily, these tests are painless. You may be asked to give blood some days or weeks before surgery, since there's a shortage of blood bank stores - it's just easier for the surgeon to have at least some matching blood already if it's needed; they get more from the blood bank if you need, but some people don't need any transfusions at all.

                Before surgery, you'll take a shower with special antibacterial soap to minimise risk of infection + you'll get changed into hospital gowns, etc.. They'll wheel you down to the operating theatre on your hospital bed (usually), & various doctors & nurses will come to ask questions. When they're ready, you'll be taken into the theatre, & the anaesthetist will put you out fairly quickly - either using a mask that you breathe a gas in through, or by inserting an IV cannula (needle) into a vein & injecting a liquid. Usually, you have the choice, & if you're nervous about going down, you can ask to be given a mild sedative (tablet or injection) to calm you before you go down there.

                Your major hurdles during the first few days after surgery will be pain. It hurts, yes. But there are some quite effective pain meds out there these days, & you'll be getting the "premium cocktail". You'll have a morphine pump for the first couple of days, when you can press a button to deliver a dose whenever needed (with limits, so you can't overdose), as well as other drugs to keep your pain bearable. You'll be quite groggy from anaesthetic & pain meds for a fair while, but honestly, sleeping is the best thing for your body to heal, anyway.

                For the first day or two at least, you'll be in Intensive Care, so that your meds & condition can be monitored closely - you'll be assigned a nurse who spends his/her shift pretty much just monitoring you the whole time. First-class treatment! As you get stronger, you'll be transferred into lower-care where you'll still be watched closely, but not have your own nurse constantly.

                Within a couple of days of surgery, you'll be able to sit up, do a little walking, etc.. It might seem early, but the sooner you're up & about, the less chance there is of getting lung problems, + movement promotes circulation, etc.. Over the first few days, you'll also be slowly building up from sucking on ice chips, to sips of water, to soft foods like jelly, & finally to full meals.

                --

                Some things that you might like to pack would be your own pillow (hospital ones are pretty hard!), & I find something like an MP3 player/iPod/discman (ie. anything that generates music & has earphones) that you can play to keep you distracted. Even though I'm an avid reader, I rarely feel up to reading even magazines post-op - but pack some reading gear in case, if you like. Hospitals do have a TV above each patient's bed, but often you have to pay to use them (per day).

                If you usually take any meds, make sure you take them with you - it saves having to hassle nurses to fetch them from the hospital pharmacy & wait for them to arrive; also, that's usually the last thing I'm thinking of doing when I'm drugged up!

                --

                Well, I'm so sorry to have rambled on so much! I hope this helps you a bit. I know it's so scary going into something like this, but it's so worth it once you recover.

                By the way, you're absolutely NOT a sook - this decision is huge & took guts. If we weren't allowed to be scared, I think all of us heading for surgery would be classified as sooks!



                Wishing you all the very best for a smooth lead-up, surgery, & recovery. Take good care of yourself.

                Comment


                • #9
                  Hello discombobulated! Thanks so much for that run down. It was the sort of detailI had been wondering about. I have been waiting some weeks to receive information on pre-op tests and hospital information, but every time I picked up the phone to ring and remind them, I didn't proceed, not wanting to hassle them.

                  I have seen my surgeon, Geoffrey Askin only once. He told me I had a 66 degree curve and what would happen if I didn't have the surgery soon. A list of risks and complications was given to me to sign and that was that, leaving me with a zillion unanswered questions, which only really occurred to me once I came out of the initial shock! He gave me the phone number of a former patient, who I spoke to once and she answered many of the zillion questions, but there always seems to be more.

                  He said I would wake up with two epidurals which would remain in my back for up to three days, so I'm hoping that means I will be painfree for the first few days. It will give me a little break before the onslaught. Glad to hear I will be getting the Premium cocktail!

                  He said I will probably need a blood transfusion on the 2nd or 3rd day, just to give me a boost. I asked him about donating for myself but he said they no longer do that, after a mix up in labels. (Horrors.)

                  I am to expect 10-14 days in hospital (Mater Private). I guess I will go home in our car, not an ambulance? The former patient I spoke to said her husband drove her home (to Toowoomba) and she said it caused the worst pain of the entire recovery and suggested I ask for the biggest dose of painkiller possible before the drive home. I live on the Sunshine Coast.

                  I am doing as much exercise to make my heart as strong as possible, kayaking and walking, also eating well. Did your doctor have any suggestions re exercise and diet? I have Graves Disease (thyroid) so that's keeping my weight under control but that could change to Hashimotos at any moment. If that happens, I'll have a battle on my hands to keep my weight down.

                  My main fear is infection. I don't think I could cope with being opened up once or twice more. I wonder what the stats are for this type of surgery.

                  I shall definitely pack my own pillow, on your advice, thank you! Also an ipod would be an excellent idea. Thanks again, I'm sure I will read yours, and other's posts over and over before the big day arrives.

                  Cheers,
                  Jen
                  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


                  • #10
                    Hi again, Jen.

                    I'm under Dr. Askin, too! My first two spinal surgeries were under a fantastic guy named Dr. Bill Ryan, who Dr. Askin trained under (& assisted in my surgeries, actually). Dr. Ryan thankfully got me into Dr. Askin who he called his "protege", one of the best in Australia & the world - we are in good hands!! Also, in my experience, he is great for answering completely random questions as they come to you, & addressing your fears/worries, no matter how irrelevant/small they might seem to us.

                    I haven't spoken a lot to him about the surgical details yet (will do so at pre-op appointments that I'm yet to get), but I like that you mentioned epidurals. I'm not sure whether having a lumbar fusion, I will get one, but I hope so. To be perfectly honest (in my experience), they do not completely knock out the pain. I don't want to scare you, but do try to be mentally prepared for pain, even with the epidural. I'm practicing relaxation techniques like imagery, deep breathing (painful but great for the lungs post-op). Having distractions like music helps, too, & you will also sleep a lot. Once the epidurals are taken out, you'll be switched to injection & oral pain meds, which will make pain manageable.

                    It's interesting that Dr. Askin told you that you won't be donating your own blood - I was told I would be, but I plan to ask him if it's possible to not, since I have terrible veins that I'd like to keep for surgery/post-op! Perhaps my case is an exception, since he's expecting a lot of blood loss (a very extensive surgery with much chopping of bone ). What do you mean by a labelling mix-up, if you don't mind me asking?

                    I've never been in the Private, but I've been in the Mater Public (Adults' & Children's, + Royal Childrens, Princess Alexandra Adult's, & Prince Charles' Adults - LOL). In all these years (22), I've only had a rare nurse or doctor who I've found incompetent or unlikeable. For the most part, I've found them caring, empathetic, & absolutely professional. I've also been in hospital across from a Mater Private nurse who was in, too - she was lovely.

                    I live about 4hrs North of Brissy, so once I'm out of hospital (10-14 days, all going well), I have to stay at a nearby hotel, under strict instruction that I'm not to travel home for at least a couple of weeks. This has been the procedure for my past 2 spine ops, too, although we weren't told the first time (T3-L3?) & made the very painful journey home by car. Make sure you clear heading home with Dr. Askin before you head off When you do set off, it's fairly unlikely that you'll score a transit ambulance, but you could always ask! If travelling by car, make sure you're packed up well with pillows, & if possible it might be comfiest to recline your seat.

                    You'll be leaving hospital with oral pain meds - I'm not sure what the standard is now, but in 1999 & 2001, it was liquid morphine (& an anti-emetic for me as well, since morphine makes me vomit. Lots. Lol). Ask before you leave what the highest dose is that you can take before you leave - & take it all, even if you don't feel like you'll need it. It's amazing how bumpy our roads are!! Also, many pain meds make a person sleepy, so you might be able to doze for a little of the trip. Uhh... just to clarify - YOU have no intention of driving, right??

                    You're right that not being overweight or anything is an advantage going into any type of surgery - but being healthy at any weight is what's most important. For me, that means trying to put on weight, slowly building up some physical endurance & improve lung capacity (a prob from my scoli), & of course eating healthily. Being fit's definitely an advantage; also, having strong abdominal muscles, since they will be important to learning how to move/balance with your new & improved spine.

                    You should definitely discuss any concerns like infection rate with Dr. Askin, since this is massively different between patients. I have a fairly high chance (like, 5-10% ), but only because of pre-existing conditions & chronic infections running around my body constantly. Of course, random things can happen, but doctors & nurses do take many precautions against infection - things like giving you very strong antibiotics through the IV during & soon after surgery. Also, even if infection does set in at the wound, it doesn't mean you'd definitely need more surgery, or extensive surgery. When caught early, many can be treated with new/different/upped antibiotics, or minor procedures to clean the inner layers of the wound. I am terrified of infection, so please know I'm not trying to "pooh-pooh" your worries....but, I think that provided we acknolwedge & accept the risks, dwelling on worst case scenarios doesn't really help us...I think going in calmly will as few stress hormones running around as possible help our bodies more

                    Again, sorry this got so long! I'm happy to answer as many random questions as float into your head, either here on the open boards or in private message - whatever you're most comfy with You might also find it useful/interesting to read back on some members' blogs - I can't find the links right now, but Ginger W. & NZGirl are two who pop to mind, & both have the links to their blogs in their signatures (found at the bottom of every post of theirs). You can start reading back at the beginning of their journeys & follow their progress to now. Both are doing great & are thrilled with their outcomes.

                    I'll be thinking of you - and I know it's SO easy to get caught up in the fear & details of all this, but please try to get out & enjoy your time, too. [I know, easy to say, hard to do!].

                    Take good care of yourself.

                    Comment


                    • #11
                      Morning discombobulated,

                      I am excited to have found another Dr. Askin patient, and one who has complete faith in him. This is very reassuring!

                      I asked his ladies in reception whether I would see him again, but they said not necessary, not until the day of the operation, which made me think that I would perhaps ask questions of him by letter (he doesn't appear to have email, or his address is not given out to patients.) The day of my appt. with him, I was stunned to hear my scoliosis was so serious as to require surgery, let alone major surgery, so I asked very few questions. It was actually a week or more before questions started coming into my mind.

                      I really don't know what he meant by "labelling mix up" but I presume the hospital would have taken the blood, whereas normally the Red Cross handles regular blood donations? And the hospital could have made a mistake. I am really not sure. As I say, I was pretty much struck dumb at that appointment, by that stage!

                      Re travelling home. I will try for a transit ambulance, but otherwise prepare myself as much as possible for a painful, bumpy ride.

                      You're right, I am better off not dwelling on negatives such as infection rate. I will just try to take every day as it comes throughout that post op period and hope for the best possible outcome. I feel lucky, lucky I have had so few problems with my back over the years, so I just hope my luck continues.

                      I have read Ginger's blog and found it amazing. Will check out NZGirl's as well.

                      Thanks for being so helpful. I am bouyed by the fact that I have "met" you. It sounds like you've been through the mill, not a great way to gain the knowledge you have but you sound quite calm and confident about upcoming surgery, and that's a wonderful way to be!

                      Thanks again!

                      Jen
                      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


                      • #12
                        Hi Jen,

                        I feel just as lucky to have met a fellow Dr. Askin patient! It's completely understandable that you didn't think to ask him many questions at first - but I'm sure he'd be happy to see you again or speak to you over the phone or answer questions you send him. Pre-op appointments with specialists like the anaesthetist are also good times to ask a lot of questions - take a list with you if you think it might help.

                        Other than that - feel free to bombard me (& the other lovely, knowledgeable members) with as many questions as you like. No guarantees that we can answer everything, but I'm happy to tackle what I can.

                        By the way....I'm most certainly not immune to the complete panic of going into this - but it's normal to be scared/worried/everything else, the best we can do is pick ourselves back up after our meltdowns/freakouts & keep plugging away & be as positive as we can. The Other Side of scoli surgery, after recovery, is SO worth it, I swear.

                        Take care

                        Comment


                        • #13
                          Hi again,

                          I see you're having a second revision surgery in December. Do you mind me asking why you needed a second and now a third surgery? I am amazed by the bravery and positivity of so many on this board in the face of so many surgeries.

                          Actually, I just read back and it seems you've had many more than just the three surgeries, judging by all those hospitals you've been to!

                          If I thought I would need further surgeries, I might think twice about it. I don't think I have the kind of intestinal fortitude required.

                          Everything I have read and been told about Dr. Askin has been good, so I feel confident that he is doing the operation. His former patient who I spoke to on the phone told him that he was a magnificent surgeon and he told her, "No, I'm just a good carpenter!"

                          Many thanks again for your and other's responses to my questions.

                          Jen
                          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


                          • #14
                            Oops, sorry to have scared you, Jen!

                            Honestly, the vast majority of scoliosis surgeries are a big success & don't need any further work. But to answer your question....

                            Originally, I was fused I think T3-L3, but then a lumbar curve formed soon after & progressed quite quickly. We knew this was a risk, but we were trying to preserve as much movement as possible for me, because I'm already in a (manual) wheelchair (partial paralysis, waist down). It's not that a lumbar fusion will greatly restrict movement, but I was already limited in how I could move, so we tried to preserve what we could.

                            But in the end, the lumbar curve was causing more restriction & pain than the fusion would, so 2 yrs later, I had the rods extended down from L3, right down the lumbar spine & anchored into my pelvis. Unfortunately, this last fusion didn't set in my pelvis because I have osteoporosis (lol, yes, I think my body has forgotten that I'm 22 ). Also, my pelvis is not quite the norm, & had already had a little bone taken from it from an earlier hip surgery (to answer your other question, yes I've had a lot of surgeries, from birth - very long story!).

                            Soooo...fate or whatever conspired, & here I am again with a 75 or so deg. lumbar curve, & feeling very lucky that Dr. Askin thinks he can help me & is willing to try.

                            Anyhow...my case is very rare. You'll probably read about a lot of members here who've had more than the one surgery, but please remember that we are the minority. It only makes sense that the masses of people who have had this surgery successfully with no further pain or problems don't need to seek support here. Of course, there are no 100% guarantees, but I think that if Dr. Askin is confident he can help you...well, that's about the closest to a guarantee that you can get.

                            Yet again, sorry to have prattled on! Hope this all makes sense.

                            By the way - I love Dr. Askin's carpenter comment! It reminds me of when I was with Dr. Ryan, & he said a similar thing - that spinal orthopaedic surgeries turns the operating theatre into a metalwork shop, complete with all kinds of crazy instruments & sounds. I'd LOVE to see a video of a scoli surgery, lol

                            Comment


                            • #15
                              Ah! Now I understand why you're so calm and accepting of these surgeries, you're an old hand at it. And only 22! You have been through the mill but have not lost your positivity or humour. I do hope this upcoming op will be your last and you can get on with your life without having surgery hanging over you, as it must have done most of your life.

                              Did Dr. Askin say how much of a correction he is hoping to get? He told me 60% and he told Di, the former patient I spoke to, the same, but got 70% for her, which she was very happy with.

                              I did see a fusion surgery on Youtube but a week later, I went back for a second viewing and couldn't find it. It was a NZ video, judging by the accents of the surgeons.

                              Take care,

                              Jen
                              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

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