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

  1. #16
    Join Date
    Mar 2010
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    2,755
    Jenna,
    Why are they putting your surgery off when you have a 100*+ curve? I would think that you would be one at the TOP of the list. Is medicine socialized where you are from? I'm really sorry you have to wait.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  2. #17
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128

    Unhappy

    Quote Originally Posted by rohrer01 View Post
    Jenna,
    Why are they putting your surgery off when you have a 100*+ curve? I would think that you would be one at the TOP of the list. Is medicine socialized where you are from? I'm really sorry you have to wait.
    Hi Rohrer,

    Gosh no, I'm not putting it off. I'd go in tomorrow if they let me. It's just a first come first served medical system although my surgeon also deals with tumours on the spine and road traffic accidents where the spine is injured so even if scoliosis surgery is scheduled it can be cancelled last minute because of an emergency.
    The system is ridiculous though. I was officially put on the list for surgery in Jan 2011 and although my curve has gone from 94 to 104 in a year and my lung capacity has reduced and my pain is sometimes unbearable that doesn't push me up the list. I'm also told my surgeon needs a cord monitoring system and operator to do scoliosis surgery, especially in my case, because of my curves I'm classed as having complicated scoliosis now.

    He says that on average he can get a monitorer and operator once every 6-7 weeks! this obviously limits when he can do this type of surgery. Although other hospitals in the country have been access to these machines or own more of them I want my surgeon to operate and I want to be in a hospital near home, also I don't want to be transferred to another hospital waiting list and be on there for 2yrs so just waiting.

    My surgeon said in Jan 2012 there were 8 or 9 in front on me and should be in by Mar. I then saw him in April when he said there were 2 or 3 in front of me. The was operating the next day on a lady who had waited 20 mths for surgery and had someone scheduled for May so I was hoping I would be in by Jul, Aug at the latest but still haven't heard anything
    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.

  3. #18
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,527
    We're thinking about you Jenna and wishing you the best. You must be a very strong woman to keep going w/ that much pain. Know that there are so many people here that support you and will be happy w/ you when your majic number comes up and you actually have the surgery. Keep us posted! Have a good day. HUGS from accross the ocean, 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

  4. #19
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
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    Quote Originally Posted by susancook View Post
    We're thinking about you Jenna and wishing you the best. You must be a very strong woman to keep going w/ that much pain. Know that there are so many people here that support you and will be happy w/ you when your majic number comes up and you actually have the surgery. Keep us posted! Have a good day. HUGS from accross the ocean, Susan
    Thanks for your post Susan it really made me smile. I'll keep my chin up and keep strong until the day comes :-)

    You keep strong too.

    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.

  5. #20
    Join Date
    Mar 2010
    Posts
    2,755
    Quote Originally Posted by Jenna.KB View Post
    Hi Rohrer,

    Gosh no, I'm not putting it off. I'd go in tomorrow if they let me. It's just a first come first served medical system although my surgeon also deals with tumours on the spine and road traffic accidents where the spine is injured so even if scoliosis surgery is scheduled it can be cancelled last minute because of an emergency.
    The system is ridiculous though. I was officially put on the list for surgery in Jan 2011 and although my curve has gone from 94 to 104 in a year and my lung capacity has reduced and my pain is sometimes unbearable that doesn't push me up the list. I'm also told my surgeon needs a cord monitoring system and operator to do scoliosis surgery, especially in my case, because of my curves I'm classed as having complicated scoliosis now.

    He says that on average he can get a monitorer and operator once every 6-7 weeks! this obviously limits when he can do this type of surgery. Although other hospitals in the country have been access to these machines or own more of them I want my surgeon to operate and I want to be in a hospital near home, also I don't want to be transferred to another hospital waiting list and be on there for 2yrs so just waiting.

    My surgeon said in Jan 2012 there were 8 or 9 in front on me and should be in by Mar. I then saw him in April when he said there were 2 or 3 in front of me. The was operating the next day on a lady who had waited 20 mths for surgery and had someone scheduled for May so I was hoping I would be in by Jul, Aug at the latest but still haven't heard anything
    Jenna,
    I think you misunderstood me. I know YOU would have had your surgery on the spot. I was just wondering why THEY, the people in charge of doing your surgery, were putting it off KNOWING that your condition is deteriorating. You answered my question, though. It really stinks to have to wait. I can't imagine operating on someone with a 50* curve before you even if they were on the list first. You are progressing and your organs are compromised. There should be some sort of triage going on where the most critical go first, like in the case of auto accidents. It's not fair that someone with an auto accident takes precidence over you. I understand that the auto accident person could die, so I'm not saying I think they should be allowed to be paralyzed or die, but gosh, you've been waiting a LONG time. It upsets me to hear stories like yours that are urgent and basically ignored by the system. The same thing happened to two women's sons. They both are from Canada and the boys were needing surgery and were in a safe range to have it. They couldn't wait any longer because they both progressed to 100*+ curves and were still progressing rapidly. They were STILL on the waiting list just to be seen! They came to the US because they could be seen at Shriner's Hospitals for kids. It is so frustrating, infuriating, sad,... I guess there are pro's and con's with socialized medicine. I'm so sorry you have to wait. Please hang in there. I'll be thinking about you and checking your thread to see how you are. You have a much better attitude than I would if I were in your shoes. (((HUGS)))

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

  6. #21
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Quote Originally Posted by rohrer01 View Post
    Jenna,
    I think you misunderstood me. I know YOU would have had your surgery on the spot. I was just wondering why THEY, the people in charge of doing your surgery, were putting it off KNOWING that your condition is deteriorating. You answered my question, though. It really stinks to have to wait. I can't imagine operating on someone with a 50* curve before you even if they were on the list first. You are progressing and your organs are compromised. There should be some sort of triage going on where the most critical go first, like in the case of auto accidents. It's not fair that someone with an auto accident takes precidence over you. I understand that the auto accident person could die, so I'm not saying I think they should be allowed to be paralyzed or die, but gosh, you've been waiting a LONG time. It upsets me to hear stories like yours that are urgent and basically ignored by the system. The same thing happened to two women's sons. They both are from Canada and the boys were needing surgery and were in a safe range to have it. They couldn't wait any longer because they both progressed to 100*+ curves and were still progressing rapidly. They were STILL on the waiting list just to be seen! They came to the US because they could be seen at Shriner's Hospitals for kids. It is so frustrating, infuriating, sad,... I guess there are pro's and con's with socialized medicine. I'm so sorry you have to wait. Please hang in there. I'll be thinking about you and checking your thread to see how you are. You have a much better attitude than I would if I were in your shoes. (((HUGS)))

    Rohrer01
    Hi Rohrer

    Yes it is frustrating, some days I'm really down but somehow I just pick myself up and keep going :-) I asked about pushing me up the list when my curve passed 100degrees and when the tests came back saying my lung was compressed but my surgeon said 'the list' doesn't work like that and he isn't worried about a few degrees progression each month or that my lung is compressed it is so frustrating!
    I know others are waiting too and people hurt in accidents need urgent medical care but the system definately needs sorting out.
    The hospital I'm under can only get a cord monitoring machine once every 6-7 wks yet other hospitals have 4-5 machines but are not able to rent them out or loan them to different hospitals its a disgrace! I asked about going to a different hospital but if I do I'm back to square one, on their list with new surgeons (when the ones I have have looked after me since I was 12) and I would be 100s of miles away from home.
    I'm so hoping i'm in by July/Aug so keep your fingers crossed for me :-)
    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.

  7. #22
    Join Date
    May 2008
    Posts
    169
    Hi Jenna. my goodness you certainly have a large curve, just think how absolutely fantastic you are going to feel when you have the operation and it is all over. I can still remember how long I waited to go to get my operation done all those years ago, but it was all worth it. You are 27 and have such a wonderful life ahead of you, when this is over and done with. You seem like a positive person and that is so important, so try and stay like that and honestly I wish you all the best. I had a really large curve as well and a hump that was just a bit much!!! All was OK, still have a slight hump and yes I have the pain but remember I was done in 1966 and that was so long ago and surgery has progressed leaps and bounds since then, thank goodness!!

    All the best

    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  8. #23
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
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    Quote Originally Posted by Lorraine 1966 View Post
    Hi Jenna. my goodness you certainly have a large curve, just think how absolutely fantastic you are going to feel when you have the operation and it is all over. I can still remember how long I waited to go to get my operation done all those years ago, but it was all worth it. You are 27 and have such a wonderful life ahead of you, when this is over and done with. You seem like a positive person and that is so important, so try and stay like that and honestly I wish you all the best. I had a really large curve as well and a hump that was just a bit much!!! All was OK, still have a slight hump and yes I have the pain but remember I was done in 1966 and that was so long ago and surgery has progressed leaps and bounds since then, thank goodness!!

    All the best

    Lorraine.
    Hi Lorraine

    Thank you for your message. I went through a range of emotions when I was told I had to get back on this rollercoaster and have further and bigger surgery. I thought my scoliosis journey was finished with 10yrs ago but like you said keep positive.
    I'm so glad surgery has progressed so much but if I'm honest I'm scared to death but I can do it :-)

    I read your signature. I hope your pain improves.

    Jenna x
    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.

  9. #24
    Join Date
    Mar 2010
    Posts
    2,755
    Jenna,
    You have such a positive attitude! Of course, you're scared. Who wouldn't be, right? But you have been through this twice before and have a pretty good idea of how much pain you'll be in, how long you'll be recovering and what kind of support you'll need. That's a huge advantage over the first-timers. You'll do great. Your positivity helps tremendously. I don't blame you one hoot for wanting to stay with the docs that have treated you from the beginning. They are familiar with you and your spine. Besides, going on yet another waiting list just seems nuts. It's just too bad that you weren't close enough to be affiliated with one of the other hospitals (with the proper equipment) all along. But that's life. It's unfair sometimes. I hope the docs are giving you something (either meds or treatments of some sort) for your pain while you wait. I'm glad that you have also found coping mechanisms to deal with the pain and stress. I'm definitely hoping you get in in July. That's next month! Keep us posted. It will be nice to hear from you when you get your surgery all done and over with.

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

  10. #25
    Join Date
    May 2008
    Posts
    169

    Smile

    Don't worry about my pain Jenna and thank you, but gee I wish you all the very best. You are certainly on a rollercoster I would have been devastated.
    You are looking at the positive side as I said and I think that is brilliant. Truly brilliant. Please keep posting and keep us up to date and I will of course keep sending you some scoli luck over the waters.

    Bless You

    Lorraine.
    Operated on in 1966, harrington rods inserted from T4 to L3, here in Australia. Fusion of the said vertebrae as well. Problems for the last 14 years with pain.
    Something I feel deeply,"Life is like money,you can spend it anyway you wish, but can only spend it once.

  11. #26
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Quote Originally Posted by Lorraine 1966 View Post
    Don't worry about my pain Jenna and thank you, but gee I wish you all the very best. You are certainly on a rollercoster I would have been devastated.
    You are looking at the positive side as I said and I think that is brilliant. Truly brilliant. Please keep posting and keep us up to date and I will of course keep sending you some scoli luck over the waters.

    Bless You

    Lorraine.
    Hi Lorraine

    Thank you so much for your kind words. I'm thinking I can't do anything else but be positive but I have down days. I haven't seen my specialist since April when he said he had a scoliosis patient to operate on the next day (12th) then someone scheduled for May but he didn't know after that. There should only be 2-3 people in front of me now so I'm going to call them for an update maybe next week but I'm sure I'll be crying when I get off the phone. Fingers crossed I'm not!.

    I'll definately keep posting this forum has been so good for me. It makes me feel good in a way that I'm not on my own although I don't like anyone suffering. I'm finding it's helping me to stay positive and I enjoy giving my opinion to peoples questions or worries.

    Keep well

    Jenna x
    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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