Adult scoliosis surgery

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looking for support, stories and advice. I am due to undergo adult scoliosis surgery in a few months. My curve is 98 degrees and my right lung has collapsed due to the curve of my spine which crushes my lung, anyone had surgery??? 

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  • Posted

    Hi Lynsey1976,

    I am amazed at your curve! That is  pretty significant, and you are now a hero to me! I had a 56 degree curve, and had the double rod surgery when I was younger.It sounds like you are on the right track, and I will tell you that you'll be O.K.! I can't advise you on how to address personally  adult surgery, because when I had mine I was too young to have fear. With that said, I will tell you my experience,and hope it will help.

    I was sitting at my kitchen table, and my stepsister asked me what i was hiding under my shirt. I said "nothing", and she lifted my shirt, and yelled for my Dad.

    Then came the doctors, and back then, my surgery was just an experiment,and saved my parents alot of money, because my doctor wanted to try the Harrington Rod method,2 rods, 10" long, which would allow me to bend at the waist, at that time there was a single rod method, but you would never bend again.

    Next,pre surgery-i had to donate many pints of blood to myself, as this surgery was a bit of a risk.1st time, no problem, 2nd time, passed out. My advice-Drink Orange Juice and eat cookies if you need to donate!

    next-Operation-Before the operation, normal procedures, no eating or drinking before, then when you get there, big comfy socks are put on you for circulation, and a nice man or woman comes in and you feel a tiny prick, as they tell you to count back from 100.

    Next-You will wake up, and feel cold-Before anything else,you will feel cold.No hunger, no thirst, no sadness, and no pain. Cold, and the smell of the things that kept you safe while under.

    Next-You will sleep, and probably have a roommate who, looking back, I wish I would have gotten to know better, but odds are, you won't,just like me, because you will be focusing on what the heck is going on.

    Next-For me, my only pain,which was so pure that it transcended anything, was when I had to sit up after the rods had been put in and had to be fitted for a brace.My doctor told me it was O.K. to scream, and I laughed at him.I had made it this far with no screaming,so why change it now? That was not the case.I tell you this, because I hope things have changed in medicine, and evolved-But if they haven't ,I think you should know this will be your challenge.Everything else will be easy,and if your lung has suffered, you are going to laugh at this part  after this surgery! I always try to be so strong with this disease and for everyone who suffers from it, and I am that for,and with you,but I'm so sorry this has gotten so far for you.As I always say, please message me if you need support, or advice on a day to day basis.It's difficult to put something like this into a few paragraphs,yet My thoughts and prayers will be with you, and I will be wanting updates!

  • Posted

    Hi Lynsey1976,

    My previous reply is waiting to be moderated.I never know why this happens, but I've been thinking, and going back to my surgery days, with fondness, believe it or not.I guess the light is always there, only waiting to be seen!

    So, some funny stories-My roommate's parents were italian, and her grandmother would come in every morning and try to force her to eat oatmeal.She resisted, and won!

    Also, day 3 after surgery, in ICU,i was very young, a teenager, and hadn't gotten up to go to a bathroom-really had no want to, until I saw this cute guy walk by our room,and I stood up, and my roommate said"No, dont!'-You haven't been given permission! I clung to that wall and inched my way forward, to that door, and looked back at her, and said, "I did it!",as he walked back past me, and my roommate started laughing hysterically.I was so baffled as to why she would have been laughing so hard, as we hadn't laughed in a few days.I said "what is so funny?"-the whole time feeling like I was going to pass out, and she told me my hospital gown was open in the back, and just as I had boasted about seeing him,I had turned my back to the hallway! To this day I hope he didn't see the dark side of my moon,but I laugh about it often!

    I guess my message to you is,none of us can give you real advice, only stories based on our own experiences.But either way, you'll be O.K! Take this surgery, and make the best of it! count your blessings you can have it done,and every person you encounter during this time,be kind to, and loving.let them see what a strong and fantastic person you are, and reflect back onto everything your optimism.

    And remember,bravery isn't the absence of fear.It's the knowledge and acceptance of it, and the willingness to go into that abyss,even with the fear.It's the knowledge that no matter what happens,you are a tiger, a beast,and fear is just something that will try to stand in your way.It will always be there, but it will be behind, or next to you.Never in front.

    • Posted

      Thank you for your kind response! I a, no hero that's for sure!! I have had scoliosis all my life I'm sure - sadly both my parents have died and I am an only child so don't really remember if I suffered when I was young!

      When I was a teenager around 14/15 I had a lot of pen pals and used to slend hours writing letters - I complained of a sore back and my mum took me to the doctor who explained I had a curve in my spine. 

      I went to see a variety of doctors but as there were no health issues at that time it was decided that surgery was uneccesary as it would only be cosmetic.

      i am now 39 😖 And I've been relatively fit my whole life. I have a very high pain tolerance and although I have suffered endless chest infections and pneumonia no doctor has ever linked this with my scoliosis.

      in the past 18 ,on this I have noticed a huge change in my spine, mainly the way my clothes hang and so I decided to go back to doctor around a year ago, I was revered to mr Garido the only adult scoliosis surgeon in Scotland - at first he was very wary to operate due to my age and the severity of my curve and because my spine is now very rigid with almost zero movement when stretched. However they have discovered that the way my lung curves is crushing my right lung which has forced the lower lobes to collapse. They believe this will combine and in 10 years I won't be able to breathe or I will struggle. My right lung capacity is 49% at present.

      i am a very positive person, and even my surgeon/doctors are amazed with the way I cope. I very rarely take any pain relief. 

      I am really looking forward to feeling "straight"!!!! They are not certain that they will straighten my curve 100% maybe 70% but this will make a huge difference.

      i really appreciate you taking the time to explain all about your operation! And your stories were hilarious!! I wonder if that cute guy still tells his version of the story! 😊 I really appreciate your support and will keep you posted! My op is not until 24th August 2016 so a few months to prepare!

  • Posted

    Hi Lynsey 1976,

    I had surgery Feb 28th 2015 aged  57. Top curve 71 bottom curve 48. Corrected to top curve 37 and bottom curve almost straight. I could not be corrected fully as over the years the spine stiffened in the middle section so they could only correct to what was decided by the surgeon once they opened me up. I have no regrets and I am still being monitored and will be for another year.First 5 days lots of vomiting and I collapsed a couple of times, but  it was due to the vomiting from the anaesthetic and lack of not wanting to eat. I was in a ward of 3 other ladies all elderly, 85 - 92 years of age and I just wanted out so I did everything they told me and I finally left hospital on the 11th day. Lots of pain relief, first 4days epidural and oral pain relief, then just oral pain relief including morphine..............away with the fairies, and believe it or not laxatives even though I was not really eating.  Apparently I was having conversations with visitors who were not there. I laugh at it so much now. Luckily I was unaware of this, unitl after I had left hospital. Eventually the medication is reduced but you will go home with plenty. I remember the beautiful feeling of water on my back from my first shower after surgery, about day 7. Having my hair washed by the nurse made me feel a million dollars as they say. Once home it was pushing forward sensibly with the support of family and friends. 6 weeks post op and retuned to outpatient clinics to be told everything is how it should be. Happy days! smile

    I cannot tell you how this has changed my life in many ways and while I can only bend from the waist now it does not hold me back. I wish I had it done years ago but at the age of 14-16 I was monitored and then fell off the radar so to speak. It was October 2012 I trapped a nerve in my neck and the surgeon I saw privately was the top surgeon for Scoliosis. It was almost like it was meant to be. Keep us posted as you go through your journey, good and bad days as there is a lot of support from people who have been through it. Best Wishes.

    P.S. Brought my first dress since my teens and it actually hangs quite nicely. I have  never be so happy about myself as I am now. 


  • Posted

    Hi Lynsey,

    If I may ask, how did the operation go? I have a family member with severe scoliosis who is considering surgery, so I'm trying to form an impression of experiences. Thanks

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