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Thread: New to the forum, awaiting full fusion- Hi

  1. #1
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    New to the forum, awaiting full fusion- Hi

    Thank you so much to everyone for sharing their experiences and opinions, they have been a real comfort to me.Whilst i've been able to speculate wth my family and boyfriend about what things might feel like or look like after surgery nothing is as good as hearing everything you have to say and looking at all your pre and post op pics.

    I found out I had scoliosis when I was 12, I had my lower spine fused in Sep 97. It was decided that my upper curve was superficial and would straighten out if my lower spine was fused. My lower curve was improved but my upper curve stayed the same. In 2001 I had a costioplasty to reduce my rib hump at the back an side.
    I thought because my spine had stayed stable until 2005 when I was discharged as an out patient my scoliosis journey was at an end but how wrong was I!

    I noticed different an more severe pain than I was used to in my back an around my right rib cage in 2010, by October the pain was so bad, and I was certain my rib cage was protruding at the front and one of my ribs at the back had moved out of line, I went back to my doctor. I can't describe how upset and disappointed I was when I found out the affects of my costioplasty were reversing and my upper curve had increased considerably but I'm over that now and trying to be positive!

    I found out in January 2011 that my curve had moved from approx 30degrees to 96degrees and I was put on the list for full fusion surgery, Since then my curve has moved to 104degrees. It is also making my bottom curve increase and I may need pelvis fusion.

    I'm obviously scared, nervous and excited about the future and hope that this forum will help to keep me positive and answer any questions that may come to mind.

    If anyone has had similar surgery or curve sizes I would be grateful to hear from you and anyone else that wants to share or just chat.

    Thanks for reading my history and I look forward to hearing from you.

    Jenna
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  2. #2
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    Welcome, Jenna!

    I don't have a similar story, but wanted to welcome you here. That's incredible that your 30* curve progressed SO much! Do they think that the 2001 surgery caused it or is this just an unusual phenomenon that happened? I'm really sorry to hear this. Since you've already had a fusion, you are a little more prepared than some others as to what to expect. I hope they get you in quickly and you have a speedy recovery.

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #3
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    Jenna--
    You've had a lot to deal with in your young life with surgeries, etc. and that huge progression. Glad you found us here and hope we are helpful. Welcome. 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.

  4. #4
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    Quote Originally Posted by Doodles View Post
    Jenna--
    You've had a lot to deal with in your young life with surgeries, etc. and that huge progression. Glad you found us here and hope we are helpful. Welcome. Janet
    Hi Janet,

    Your surgery results are amazing!I hope I'm as lucky. How are you getting on now? Have you adapted to your new body or are there things that you cannot do anymore?
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  5. #5
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    Quote Originally Posted by rohrer01 View Post
    Welcome, Jenna!

    I don't have a similar story, but wanted to welcome you here. That's incredible that your 30* curve progressed SO much! Do they think that the 2001 surgery caused it or is this just an unusual phenomenon that happened? I'm really sorry to hear this. Since you've already had a fusion, you are a little more prepared than some others as to what to expect. I hope they get you in quickly and you have a speedy recovery.

    Rohrer01
    Hi Rohrer,

    The 2001 surgery shouldn't have had an affect they are just saying its strange everything has started to move again and at such a rapid rate. I'm counting down the months but have no real idea of when I will get my surgery, hopefully by Sep.
    Are you just being monitored now or are you on a list for surgery?
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  6. #6
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    Quote Originally Posted by Jenna.KB View Post
    Hi Rohrer,

    The 2001 surgery shouldn't have had an affect they are just saying its strange everything has started to move again and at such a rapid rate. I'm counting down the months but have no real idea of when I will get my surgery, hopefully by Sep.
    Are you just being monitored now or are you on a list for surgery?
    I'm just trying to manage the pain and am being monitored until I'm at the magic number for surgery. I'm actually hoping that I can get the pain to stop via other treatments than the pain meds and muscle relaxants. If I can accomplish this, I won't even think the word surgery unless my curves get really severe. I've had enough "other" surgeries to know that this one would be a doozy. It's not something that I think I could handle right now. Unlike you, I don't know what I'm in for. I've always been told that I will NEED surgery someday, but that someday gets pushed farther and farther into the future. I may just take this disease to my grave. Who knows?

    I'm not trying to be morbid or anything. It's just that my symptoms always seem so exggerated compared to the actual pathology. That could be due to my unusual curve pattern, though. I'm not a typical scoli either. My curve is a very high and tight LEFT thoracic curve that is now a double major thoracic with a right curve of growingly similar magnitude. My neck muscles especially don't like that high and tight curve. =(

    I'm still wow-ed about your progression, though. Your spine should have been stable at 30* being that you are an adult. I'm wondering if you are still growing for some odd reason. Stranger things have happened. Has your height and weight been stable, or have you shrunk tremendously?

    Again, I wish you the best outcome possible.

    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  7. #7
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    Quote Originally Posted by rohrer01 View Post
    I'm just trying to manage the pain and am being monitored until I'm at the magic number for surgery. I'm actually hoping that I can get the pain to stop via other treatments than the pain meds and muscle relaxants. If I can accomplish this, I won't even think the word surgery unless my curves get really severe. I've had enough "other" surgeries to know that this one would be a doozy. It's not something that I think I could handle right now. Unlike you, I don't know what I'm in for. I've always been told that I will NEED surgery someday, but that someday gets pushed farther and farther into the future. I may just take this disease to my grave. Who knows?

    I'm not trying to be morbid or anything. It's just that my symptoms always seem so exggerated compared to the actual pathology. That could be due to my unusual curve pattern, though. I'm not a typical scoli either. My curve is a very high and tight LEFT thoracic curve that is now a double major thoracic with a right curve of growingly similar magnitude. My neck muscles especially don't like that high and tight curve. =(

    I'm still wow-ed about your progression, though. Your spine should have been stable at 30* being that you are an adult. I'm wondering if you are still growing for some odd reason. Stranger things have happened. Has your height and weight been stable, or have you shrunk tremendously?

    Again, I wish you the best outcome possible.

    Rohrer01
    Sorry to hear your in so much pain. I definately know where you're coming from. I normally take the maximum pain meds I can take and they still don't help and I just want to cry. I sometimes feel like a cork screw, really twisted and squashed down. I usually say it feels like I've been carrying a small child on my shoulders for hours. I do find a hot water bottle or lying down when I can gives my muscles time to relax.
    Do you see a physiotherapist at the minute? Mine has given me some neck and shoulder stretches because of the pain I'm getting because of my top curve so maybe you could get some stretches. I also find a good massage can sometimes loosen the muscles and lessen the pain.
    Its a shame you keep getting told surgery when your curve gets to x degrees then the goal posts move. Well I can honestly say my first fusion was the best decision I've ever made. I grow by 2 inches, my spine stablished and the pain got better. I also felt less twisted and conscious about my humps.
    No definately still not growing. Between 18yrs and 21yrs nothing moved so I was discharged from my surgeons out patient list. I was 5foot 3 and a bit inches but in the last yr I've shrunk nearly 2 inches so feel really squashed and short. Fingers crossed my surgery fixes all of the above :-)
    Hope you find some pain relief.
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  8. #8
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    Quote Originally Posted by Jenna.KB View Post
    Sorry to hear your in so much pain. I definately know where you're coming from. I normally take the maximum pain meds I can take and they still don't help and I just want to cry. I sometimes feel like a cork screw, really twisted and squashed down. I usually say it feels like I've been carrying a small child on my shoulders for hours. I do find a hot water bottle or lying down when I can gives my muscles time to relax.
    Do you see a physiotherapist at the minute? Mine has given me some neck and shoulder stretches because of the pain I'm getting because of my top curve so maybe you could get some stretches. I also find a good massage can sometimes loosen the muscles and lessen the pain.
    Its a shame you keep getting told surgery when your curve gets to x degrees then the goal posts move. Well I can honestly say my first fusion was the best decision I've ever made. I grow by 2 inches, my spine stablished and the pain got better. I also felt less twisted and conscious about my humps.
    No definately still not growing. Between 18yrs and 21yrs nothing moved so I was discharged from my surgeons out patient list. I was 5foot 3 and a bit inches but in the last yr I've shrunk nearly 2 inches so feel really squashed and short. Fingers crossed my surgery fixes all of the above :-)
    Hope you find some pain relief.
    Yes, I've seen many physical therapists. Some have helped and most have not. The exercises and stretches that used to help no longer do. I am seeing a physiatrist (a doctor specializing in physical medicine) and he does steroid injections into the muscle spasms. That helps a lot, but not enough to get me off of pain meds. I was ultimately diagnosed with cervical dystonia as a result of my neck coming out of my shoulders at such an odd angle. It puts a TON of stress on the upper trapezius just to hold my head up. I'm going in for Botox injections this week to try to paralyze some of these spasms. Hopefully it will help and my head won't droop. That's what I'm most afraid of, not being able to hold my head up afterwards. I also have degenerative disc disease in my lowest disc, which hurts a lot sometimes (and it's mild! I can't imagine severe DDD), even causing pain to go down the legs. This isn't how I anticipated my life to be. I imagined that I would feel energetic, healthy and active at my age. I'm currently exercising at the hospital's cardiac center so that they can watch my heart while I get back into shape. I amazingly went for a bike ride yesterday and rode a LOT farther than I thought I could. So that made me happy. Although my lower back started hurting afterward. Oh well. My goal is to get into the best physical condition that I can and employ other treatment options such as injections to manage the pain. I'm hoping that ultimately I will not need narcotics anymore. I've been told that I always will need them, which upsets me. My scoli doctor just thinks I'm a druggie and my anesthesiologist is the one who said I have too much pathology to NOT be on the meds. I'd just like to live a normal life. I sound like a pitty party, so I'll stop here. There are so many more people, like you, that are worse off than me. My smallish curve just shouldn't be causing so much pain, unless I'm just a wimp! LOL I just don't understand why I'm not shrinking as my curves progress because I'm 43! Maybe that little of progression isn't enough to affect height? Hmmm.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  9. #9
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    Quote Originally Posted by rohrer01 View Post
    Yes, I've seen many physical therapists. Some have helped and most have not. The exercises and stretches that used to help no longer do. I am seeing a physiatrist (a doctor specializing in physical medicine) and he does steroid injections into the muscle spasms. That helps a lot, but not enough to get me off of pain meds. I was ultimately diagnosed with cervical dystonia as a result of my neck coming out of my shoulders at such an odd angle. It puts a TON of stress on the upper trapezius just to hold my head up. I'm going in for Botox injections this week to try to paralyze some of these spasms. Hopefully it will help and my head won't droop. That's what I'm most afraid of, not being able to hold my head up afterwards. I also have degenerative disc disease in my lowest disc, which hurts a lot sometimes (and it's mild! I can't imagine severe DDD), even causing pain to go down the legs. This isn't how I anticipated my life to be. I imagined that I would feel energetic, healthy and active at my age. I'm currently exercising at the hospital's cardiac center so that they can watch my heart while I get back into shape. I amazingly went for a bike ride yesterday and rode a LOT farther than I thought I could. So that made me happy. Although my lower back started hurting afterward. Oh well. My goal is to get into the best physical condition that I can and employ other treatment options such as injections to manage the pain. I'm hoping that ultimately I will not need narcotics anymore. I've been told that I always will need them, which upsets me. My scoli doctor just thinks I'm a druggie and my anesthesiologist is the one who said I have too much pathology to NOT be on the meds. I'd just like to live a normal life. I sound like a pitty party, so I'll stop here. There are so many more people, like you, that are worse off than me. My smallish curve just shouldn't be causing so much pain, unless I'm just a wimp! LOL I just don't understand why I'm not shrinking as my curves progress because I'm 43! Maybe that little of progression isn't enough to affect height? Hmmm.
    Its a bummer relying on meds to try and get rid of the pain. Especially when your specialist says"i don't understand why you have pain, studies say having scoliosis doesn't give you pain" well I beg to differ!
    So many times I feel like crying when they don't work but somehow pick myself up by thinking of what I have in life, what I can do that there is always someone feeling worse than me. I try to put my feet up when I can or use a hot water bottle which sometimes helps.

    I think you're just going to have to take it easy and hopefully the pain will lessen. However well done on your bike ride, maybe little and often will help. Can't remember if you said in previous posts if you are considering further surgery or can have further surgery?

    The main reason I wanted further surgery was to try and get rid of the pain and be able to exercise again (my right lung is being squashed by my rib cage so I'm very restricted at the minute). I'm told that they cannot guarantee the pain will get better but everyone's stories on the forum really gives me hope. Plus I've always wanted to be straight with no rib hump and taller so i'm hoping my dreams come try as others on here and I get all of the above. How good would that be :-)

    Hope the Botox helps. I'll keep my fingers crossed for you. Keep your chin up
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  10. #10
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    Thanks!

    I haven't had any back surgery. It scares me, but if things keep on progressing like they are, I will need it eventually. I'm no spring chicken. I'm guessing I'll be in my 50's or something like that. I have no desire to go back to the scoli doc at the moment. My last two visits left me in tears and I have too much going on to mess with going back there right now. Yes, there are a lot of people way more limited than I am. I'm the kind of person that likes to be active with no restrictions. When I was younger, I could pretty much do anything. I would have the occaisional flare-up that would debilitate me for a month or so, but then I'd be right back on my feet. Now that I'm getting older, it's not that easy. You are an optimistic young woman. I hope your dreams do come true!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  11. #11
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    Quote Originally Posted by rohrer01 View Post
    Thanks!

    I haven't had any back surgery. It scares me, but if things keep on progressing like they are, I will need it eventually. I'm no spring chicken. I'm guessing I'll be in my 50's or something like that. I have no desire to go back to the scoli doc at the moment. My last two visits left me in tears and I have too much going on to mess with going back there right now. Yes, there are a lot of people way more limited than I am. I'm the kind of person that likes to be active with no restrictions. When I was younger, I could pretty much do anything. I would have the occaisional flare-up that would debilitate me for a month or so, but then I'd be right back on my feet. Now that I'm getting older, it's not that easy. You are an optimistic young woman. I hope your dreams do come true!
    Thank you! I hope you get some relief and soon.
    I know what you mean about coming away in tears so maybe try and put it to the back of your mind for a while but don't worry about feeling old there are many people on here that have had surgery that are 10 yrs older than you and feel like they have a new lease of life so there are always options.
    Good Luck
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

  12. #12
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    "I sound like a pitty party, so I'll stop here. There are so many more people, like you, that are worse off than me. My smallish curve just shouldn't be causing so much pain, unless I'm just a wimp! "

    Reading this blog you can see that the degree of a curve does not necessarily correspond w/ the degree of pain. I can't imagine that what you have is probably what is causing your pain. Be kind to yourself. You're not a wimp.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision 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 + prayer

  13. #13
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    Jenna, good luck wtih your surgery....
    i cannot imagine the pain with a 104 degree curve...
    my largest curve is now 70 and the pain just worsens...
    i know there is no guarantee, but i truly hope the surgery fixes everything for you, including the pain...

    jess

  14. #14
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    Jenna, I wish you best of luck with your surgery and I hope that it goes well
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  15. #15
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    Thank's for your kind wishes and luck!

    Having a good day pain wise so far but it is only 11am hear in the UK. I'm hoping the sunny weather continues because that always helps the pain and brightens up the day.

    I'm keeping everything crossed and whilst I'm trying not to think about it I really am counting down the days until I get a call to say they have scheduled my operation, 16 mths waiting and still counting.

    Melissa, how are you getting on? I've seen some of your posts. So sorry to hear you've had additional problems since your spinal surgery

    Jenna
    27 yr old Female.
    Scoliosis since 12yrs, fusion to lower curve in 1998, costioplast 2001 and further corrective surgery 26 July 2012.
    Now the proud owner of a very straight spine. T1- L5 fusion.
    Mr Dunsmuir, Orthopaedic Surgeon, LGI Leeds.

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