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Thread: And the waiting continues!

  1. #16
    Join Date
    May 2012
    Location
    El Centro, CA & Baja California, Mexico
    Posts
    193

    Sorry to hear this...

    I am not sure that I am reading correctly regarding where you are located and whether you have insurance or not. Some of us are fortunate in this forum to a have insurance coverage and the ability to move around (domestically & financially).

    I am 62 and have never considered fusion because I was not allowing anyone to touch my spine. However, at 80 and 90 degrees double curves and increasing I was able to find a surgeon that is not only specialized but have done this type of surgery for 30 years on a weekly basis, registered with the scoliosis organizations, continually publishing and participating in research on the spine and scoliosis. Once meeting him and watching him study/measure etc my xrays with a team of other doctors (interns, fellow and his assistant) I came out totally convinced about going with surgery.

    Dr Bridwell (ST Louis) was my second opinion while the first surgeon was located much closer to my home. The first surgeon was nice, spent time and his staff was very responsive to my scheduling. However, this doctor recently joint the practice and has done a year fellowship with another top scoliosis surgeon.

    I went with age, experience, exposure and type of practice. Dr. Bridwell is at Washington University, have an office within a major building linked with walkways to major hospital.

    What I am trying to say here is to change to another doctor. It is obvious that he does not really want the risk of taking care of you either for profit and or publicity reasons. He does not have your problem as his first priority and should have been honest with you.

    If you are in Australia, I am sure that the entire country has many specialized scoliosis surgeons who are members of any of the world wide organizations. You are too young to continue to suffer and risk having a non-top surgeon even giving you an evaluation. You deserve the best and should be able to find some other professional. Skip the complaint phase as that will just aggravate you and continue to make you angry and frustrated. Take charge and move on. I wish I could help encourage you more.

    Find websites in your country or the United States of scoliosis surgeons... send them emails. Maybe, some organization have funds available to help if you do not have insurance. But, don't be at the mercy of frustration because the line moved and you are now end of the queue.

    Gardenia
    Gardenia
    Baja California, Mexico & El Centro, Ca
    pre-surgery 75 and 89 - post ?
    Dr. Bridwell Nov 27, 2012 @Barnes Jewish @62yrs
    T11 to Sacrum Dural leak at L2 & L3 ccmail4g@gmail.com

  2. #17
    Join Date
    May 2008
    Posts
    169
    Hi Jenna. Honey I am so very sorry for what you are going through and understand your frustration. I definately, positively think that a curve of 100+ should be operated on as soon as possible. Honey it is your body, you don't have to please anyone but yourself. Great idea to write the letter and complain as they all need to wake up to themselves. There is a scoliosis site for England and just thinking I am sure there is a list of very good scoliosis doctors on there. But don't leave us!!

    They could be putting your further down the list because they want the younger ones operated on first, well dear this is not on. Check out the other doctors dear, this doctor, sounds like a selfish cow anyway.(sorry)


    Lorraine,. ((hugs))xx
    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.

  3. #18
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Thanks for all your comments.

    The hospital is a top hospital in the city I live in, in the UK. You don't tend to have medical insurance in the UK when you are young. When I was diagnosed my parents tried to get me private medical insurance due the insurance companies knew the cost of scoliosis and wouldn't treat me so I'm under an NHS hospital.

    My surgeon is about 10 yrs qualified and highly regarding in this work, he does NHS work and private work. It seems the hospital dont have the funds or don't want to spend the money to get more cord monitorers to ensure that more operations can be done each month.

    I don't understand how he cannot classify me as an urgent case with the curves and lung capacity I've got. I'm sure my curve must be getting bigger because over the last few weeks my breathing has been getting so tight, its as though I can't get a full breathe. Even walking up the stairs in my house last night, on the phone to my mum and was out of breathe when I got to the top, its only 12 steps!

    I thought because I was with this hospital when I was younger I would just go back here for surgery but I'm losing trust in my surgeon, he tells me one thing, gets my hopes up then does the opposite and pushes me down the list.

    I'm even more annoyed that on the UK forum I have found some patients who were diagnosed about Sep & Oct last year and had surgery last month with a colleague of my surgeons at the same hospital! If their waiting list is much shorter surely my surgeon has a duty of care to get me seen as soon as possible, never mind if he wants the glory of doing another complicated case he should pass me to someone who can fix this asap.

    i'm trying to find out from other NHS hospitals their waiting lists and how many cord monitoring machines they have. I'm told I'll have to be taken off the waiting list at this hospital and start all over again on a new list. I'm scared that I move hospital and I'm waiting this long again. I'm just hoping they are being honest when they tell me how long their waiting lists are.

    I'm going to have a weekend full of research and letter writing. I definately want to expose this department and their procedures to the trust board of the hospital and get my doctor to write to the surgeon for answers and write to another hospital and try and get me a referal and quick. I don't mind paying for a private consultation if that means I get a surgeon telling me I need surgery asap and puts me on an urgent list. I'm probably hoping for a lot but I need this sorting.

    Chin up, soldier on, try and be positive and keep my fingers crossed!

    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.

  4. #19
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Just heard back from my Yorkshire friend Jenna.

    My surgeon is based at the Sheffield Northern Genral Hospital and his name is Ashley Cole. There are a team of surgeons there but she could ask initially to see Mr Cole - he tends to specialise with Adults and he does surgeries every week - very experienced. There will be a waiting list there too no doubt and although I was lucky to get it done relatively quickly my surgery date was cancelled and re-booked about 3 times in the month I had it done and I know others did experience the same. Gillys 3rd op was canceeled when she was waiting to go to theatre - an emergency had come in - imagine how that must have felt. Anyway - my original consultation was 31st Dec 2008, I then had 2 further appointments to decide if I wanted to go ahead then an appointment for tests. My surgery date was originally 5th November 2009 but it was changed 3 times and ended up been either 18th or 19th - can't just remember which. So all in all - less than a year's wait. I think the LGI tend to specialise and prioritise children - I only know 1 other adult who is waiting there for an op - she had the Harrington rods as a child and needs nerves cutting or something now she is in her late 40's.

    She has asked me to give you her email address if you would like to contact her. Drop me a private message and I'll give it to you.

    Good luck, Jenna!
    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

  5. #20
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Quote Originally Posted by JenniferG View Post
    Just heard back from my Yorkshire friend Jenna.

    My surgeon is based at the Sheffield Northern Genral Hospital and his name is Ashley Cole. There are a team of surgeons there but she could ask initially to see Mr Cole - he tends to specialise with Adults and he does surgeries every week - very experienced. There will be a waiting list there too no doubt and although I was lucky to get it done relatively quickly my surgery date was cancelled and re-booked about 3 times in the month I had it done and I know others did experience the same. Gillys 3rd op was canceeled when she was waiting to go to theatre - an emergency had come in - imagine how that must have felt. Anyway - my original consultation was 31st Dec 2008, I then had 2 further appointments to decide if I wanted to go ahead then an appointment for tests. My surgery date was originally 5th November 2009 but it was changed 3 times and ended up been either 18th or 19th - can't just remember which. So all in all - less than a year's wait. I think the LGI tend to specialise and prioritise children - I only know 1 other adult who is waiting there for an op - she had the Harrington rods as a child and needs nerves cutting or something now she is in her late 40's.

    She has asked me to give you her email address if you would like to contact her. Drop me a private message and I'll give it to you.

    Good luck, Jenna!
    Thanks! I've sent you a private message.

    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.

  6. #21
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I hope chatting to Christine will help Jenna. Let us know how you go!
    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

  7. #22
    Join Date
    Mar 2010
    Posts
    2,755
    Jenna, I'm hopeful that you can get the help you need through this new means. ((((HUGS))))
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

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