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  1. #1
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128

    Unhappy And the waiting continues!

    I'm glad I didn't hold my breathe. Called the hospital today for an update on my surgery. 17 mths and waiting!
    I was told in April that there were 3 people scheduled before me, one operation was the following day, May was scheduled but no further.
    I'm told because of the NHS in the UK and the hospital I'm under my surgeon can only get a spinal cord monitorer once every 6 wks.
    I was told today that the operation scheduled for June cannot go ahead until July now because the doctors are striking over pensions and the admin lady I spoke with doesn't know if the May operation went ahead because their were 'problems with beds'. She cannot tell me anymore and doesn't know if the June op for Jul has been scheduled because they haven't been told yet when they can get a spinal cord monitorer for Jul onwards. What a joke! I have to call back tomorrow to see if I can get anymore information.

    How I hate this procedure, the waiting, the upset, the pain, the frustration. Sometimes I don't know how I stay positive. It doesn't help when your having a bad pain day as well. :-(

    Sorry, rant over
    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
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    I am so sorry to hear about another setback for you
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  3. #3
    Join Date
    Mar 2010
    Posts
    2,755
    Jenna,
    I don't know what to say to lift your spirits. There are pro's and con's to both socialized medicine AND non-socialized medicine. At least you are going to eventually get your surgery. Over here in the U.S., if you don't have insurance and aren't poor with kids, NO ONE would help you. It's hard to find someone to do a pro bono job like that because these are some of the most expensive surgeries to have. Then if you do have insurance, THEY tell you if you need surgery and where you can go, whether the doctor is qualified or not. There are just very few choices unless you have a super duper insurance plan. As it is, my husband pays a full 1/3 of his income to insure me and I can only go to certain providers on my list. I also have to pay about $200 a month for my medicine and I have co-pays and deductibles. I have met my $1000 out-of-pocket for the year, but crimeny, we are still paying over $1000 a month just for insurance and meds! If I try to go outside of the list they can deny coverage AND if I need to see a specialist, they choose who it is. I'm not allowed a second opinion because the second opinion has to be an "in-network" doctor, and there aren't any "in-network" scoli doctors. It is VERY frustrating! I realize that my curve is nothing compared to yours, but it is an unusual curve and painful by its very nature. So maybe hearing about how imperfect things are here will make you at least feel a little better knowing that you will eventually get your surgery, no matter your social class. I hope the doctors quit striking and start operating! That's another drawback to socialized medicine. The docs are overworked and underpaid. Becoming a doctor is no easy task, especially one who specializes in something. They should get paid well for what they do, but it should never be at the expense of the people waiting for surgery.

    One doctor put it this way, as my husband is a mechanic he related well to it. He said mechanics work on motors and such, and I operate on the body. The only difference being, try working on the motor with it running! I thought that was a good analogy. Totally off topic, but makes one think of how hard the job of a surgeon really is!

    I hope your pain gets better. Have they given you anything for it? If not, I would beg and hound them or sit in their office crying until they did! Chin up. We can only live one day at a time. We don't know what tomorrow holds. But you DO know this: Today is one day closer to your surgery, whenever it may be.
    ((((HUGS))))
    Rohrer01
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #4
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Quote Originally Posted by rohrer01 View Post
    Jenna,
    I don't know what to say to lift your spirits. There are pro's and con's to both socialized medicine AND non-socialized medicine. At least you are going to eventually get your surgery. Over here in the U.S., if you don't have insurance and aren't poor with kids, NO ONE would help you. It's hard to find someone to do a pro bono job like that because these are some of the most expensive surgeries to have. Then if you do have insurance, THEY tell you if you need surgery and where you can go, whether the doctor is qualified or not. There are just very few choices unless you have a super duper insurance plan. As it is, my husband pays a full 1/3 of his income to insure me and I can only go to certain providers on my list. I also have to pay about $200 a month for my medicine and I have co-pays and deductibles. I have met my $1000 out-of-pocket for the year, but crimeny, we are still paying over $1000 a month just for insurance and meds! If I try to go outside of the list they can deny coverage AND if I need to see a specialist, they choose who it is. I'm not allowed a second opinion because the second opinion has to be an "in-network" doctor, and there aren't any "in-network" scoli doctors. It is VERY frustrating! I realize that my curve is nothing compared to yours, but it is an unusual curve and painful by its very nature. So maybe hearing about how imperfect things are here will make you at least feel a little better knowing that you will eventually get your surgery, no matter your social class. I hope the doctors quit striking and start operating! That's another drawback to socialized medicine. The docs are overworked and underpaid. Becoming a doctor is no easy task, especially one who specializes in something. They should get paid well for what they do, but it should never be at the expense of the people waiting for surgery.

    One doctor put it this way, as my husband is a mechanic he related well to it. He said mechanics work on motors and such, and I operate on the body. The only difference being, try working on the motor with it running! I thought that was a good analogy. Totally off topic, but makes one think of how hard the job of a surgeon really is!

    I hope your pain gets better. Have they given you anything for it? If not, I would beg and hound them or sit in their office crying until they did! Chin up. We can only live one day at a time. We don't know what tomorrow holds. But you DO know this: Today is one day closer to your surgery, whenever it may be.
    ((((HUGS))))
    Rohrer01
    Hi Roher

    Thanks for your message. I always have the attitude that somewhere there is always someone worse off than you but sometimes my situation just gets me down.
    The doctors are striking over pensions, basically the UK government has been too nice and has been spending too much for too long. They are in debt so need to make cuts and people don't like it. Whilst I think state pension is a great idea and a help for many people I do think there is an onus on each of us to provide for and save for our own future. Only accident and emergency patients will be seen on 21st June, what a waste of valuable operating time.
    Ye I'm so glad I'm not in your shoes I must say. My mum tried to get me insured privately as soon as I was diagnosed with scoliosis but nobody would have me because they knew what the cost of having scoliosis was :-) I am luckily that I have had and can get help from the NHS the system just needs totally rehauling.
    I hope all the money you have to spend helps your pain and gets you to where you want to be.

    I'm taking the max pain meds I can at the min, some days they help a little then others I feel so sleepy and sick and the pain is still there. Its 9am hear and so far so good. Hope your having a good pain day :-)

    I decided to sort myself out last night, stay positive and look to the future. I've seen so many fabulous before surgery and after pics on here so decided to start my own. I got my boyfriend to take two pics. One of my back when I'm stood and one when I'm leaning over. I didn't know my back looked as bad as it does but then I just thought, now to wait for the after pics and hope they are as fabulous as everyone elses. 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.

  5. #5
    Join Date
    Mar 2010
    Posts
    2,755
    Jenna,
    My insomnia is coming to it's grueling conclusion. It's 4:10am over here. I'm finally going to bed. I hope you have a wonderful and less painful day!
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  6. #6
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128

    Unhappy Unexplainable Disappointment!

    Hi all,

    Far from a wonderful day. I don't know how many more set backs and disappointment I can cope with.
    I called the hospital for more info about my surgery. My surgeon said in Apr there should be 3 people in front of me so I should be in by Jul/Aug at the latest.
    I've now been told more people have been put in the queue before me so now there are 7 people before me starting with the first operation scheduled in July! Due to access to cord monitoring my surgeon can only operate on scoliosis patients once every 6 wks so that potentially another 7 mths waiting and i've already been waiting 17 mths!. Thats if my surgeon doesn't decide to put more people in front of me.

    So upset, actually thought I was getting closer to surgery not further away.

    The lady who arranges the surgery list says that my surgeon alters the list depending on how quickly peoples curves increase. If they increase by 10 degrees or more from one appointment to the next they are classed as a priority and need to be put in front of me and whoever else.

    I don't want to be selfish but who knows how quickly my top curve started to progress. They discharged me when I was 21 yrs old, maybe if they had continued to monitor me they would have seen as soon as it started to curve, monitored me and at the rate the degree increased I would be classed as a priority but because my curve is now at 104 degrees and is only moving a few degrees each time I don't seem to matter. Doesn't seem to matter that my curve is 'complex' by his words and 'more difficult' to operate on plus my lung capacity has been hugely decreased he just keeps pushing me down the list instead of 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.

  7. #7
    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

  8. #8
    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.

  9. #9
    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.

  10. #10
    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

  11. #11
    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.

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