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Thread: And the waiting continues!

  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
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Jenna, you're probably set on having surgery with this surgeon but doing only one surgery every 6 weeks is not giving him a lot of experience. Do you have the right to change your surgeon? I have a friend from Yorkshire who had her surgery 2.5 years ago and she was happy with her outcome. I'm certain she didn't have to wait very long once she decided. I can get his name for you if you are interested.
    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

  8. #8
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,224
    Oh Jenna I am so sorry to hear this news.
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  9. #9
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Quote Originally Posted by JenniferG View Post
    Jenna, you're probably set on having surgery with this surgeon but doing only one surgery every 6 weeks is not giving him a lot of experience. Do you have the right to change your surgeon? I have a friend from Yorkshire who had her surgery 2.5 years ago and she was happy with her outcome. I'm certain she didn't have to wait very long once she decided. I can get his name for you if you are interested.
    Hi Jen,

    If you could get me the name that would be great.

    I've been seing the same spinal team since I was diagnosed at 12yrs old and the guy who would be doing the surgery was training when I had my first surgery in 97. He's got a very good reputation and does work privately too but NHS patients have to wait so long because the hospital I'm under only has access to 1 cord monitorer between 5 surgeons.

    I expected to wait approx a yr for surgery but now he's just pushing me further and further down the list. When does this stop? He secretary said I would need to discuss my concerns with him and maybe consider going elsewhere for surgery. I didn't really want to go elsewhere because I'm familiar with the hospital, the surgeon, his ability and the hospital is close to my family and mine and my boyfriends home but now I'm not sure. If the waiting lists are considerably shorter maybe I should consider it.

    I'm going to write a complaint to the Trust Board about the problems I've had with getting appointment and now the waiting time and ask for an explanation as to why I'm not considered an urgent case when my curves are so bad. I have a right to the access of medical care from the NHS in a reasonable time frame and I should also have the right to a career, have a family and get married. All of which is being hindered because of this. Plus I can't get an appointment to discuss my case with my surgeon until August now!

    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
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Quote Originally Posted by mabeckoff View Post
    Oh Jenna I am so sorry to hear this news.
    Thanks.

    How are you, have you had your shots yet? I think I remember reading you were getting pain shots today?
    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.

  11. #11
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    Quote Originally Posted by Jenna.KB View Post
    Hi Jen,

    If you could get me the name that would be great.

    I've been seing the same spinal team since I was diagnosed at 12yrs old and the guy who would be doing the surgery was training when I had my first surgery in 97. He's got a very good reputation and does work privately too but NHS patients have to wait so long because the hospital I'm under only has access to 1 cord monitorer between 5 surgeons.

    I expected to wait approx a yr for surgery but now he's just pushing me further and further down the list. When does this stop? He secretary said I would need to discuss my concerns with him and maybe consider going elsewhere for surgery. I didn't really want to go elsewhere because I'm familiar with the hospital, the surgeon, his ability and the hospital is close to my family and mine and my boyfriends home but now I'm not sure. If the waiting lists are considerably shorter maybe I should consider it.

    I'm going to write a complaint to the Trust Board about the problems I've had with getting appointment and now the waiting time and ask for an explanation as to why I'm not considered an urgent case when my curves are so bad. I have a right to the access of medical care from the NHS in a reasonable time frame and I should also have the right to a career, have a family and get married. All of which is being hindered because of this. Plus I can't get an appointment to discuss my case with my surgeon until August now!

    Jenna x
    I have emailed her and asked her for the name of her surgeon.

    I can totally understand you want to stay with the same surgeon/hospital etc. but if you could find a good surgeon, well recommended, who can do your surgery sooner, it might be worth changing. But it's possible he's now as busy as your surgeon. Anyway, it's worth the exercise in finding out. I'll post his name as soon as I hear from her.
    Jen
    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

  12. #12
    Join Date
    Mar 2008
    Location
    New Bern, NC
    Posts
    1,445
    Jenna, I agree that you should find another surgeon if at all possible. One who operates on many more scoliosis cases. Once every 6 weeks is not who I would go with. My surgeon does at least three cases each week. It sounds to me that maybe your surgeon doesn't want to operate on you since you are such a complex case and since he keeps putting you off. You certainly can't afford to wait much longer. My heart goes out to you.
    Sally
    Diagnosed with severe lumbar scoliosis at age 65.
    Posterior Fusion L2-S1 on 12/4/2007. age 67
    Anterior Fusion L3-L4,L4-L5,L5-S1 on 12/19/2007
    Additional bone removed to decompress right side of L3-L4 & L4-L5 on 4/19/2010
    New England Baptist Hospital, Boston, MA
    Dr. Frank F. Rands735.photobucket.com/albums/ww360/butterflyfive/

    "In God We Trust" Happy moments, praise God. Difficult moments, seek God. Quiet moments, worship God. Painful moments, trust God. Every moment, thank God.

  13. #13
    Join Date
    May 2012
    Location
    United Kingdom, Leeds
    Posts
    128
    Thanks Jen.

    The problem is when I do see him he says 'he's confident he can get my curves to under 40degrees, he's confident in how he's going to do the operation and is glad I want him to do it, we just need to wait for the cord monitorer to become available and the list get to me and I'm in'. This seems to be total rubbish though because he's then putting more and more people in front of me and pushing my surgery back.

    His secretary says that the people in front are younger than me but their curves are moving at 10degrees from one appointment to the next so are classed as urgent. I'm not suprised their curves are increasing if they are still growing and even though they are still growing their curves aren't as bad as mine, plus their lung isn't being squashed. I've been waiting 17mths already and I'm in so much pain. Feel like he's playing god, he'll get to me when he choses.

    When he told me I could go elsewhere my first instinct was to stay with the same team at the same hospital but if he had given me more information e.g. they have double the cord monitorers we have and the waiting lists are shorter of course I would of considered moving. I don't think he wanted me to do that because he said with my case being so complicated it would bring a lot of attention to the hospital and thus revenue and so he doesn't want that money going to another hospital but its patient care that should come first!

    I'm definately looking into my options and raising a complaint with the hospital. I was referred as an urgent matter in Oct 2010 but didn't get an app until Apr 2011, I then had to chase for an app in Aug and waiting until Oct 2011. I saw my surgeon again in Jan and had pre op for Mar but that didn't happen. I then had app in Apr and was told I didn't need to be seen until just before surgery in about June/July but if I hadn't have called the other day I wouldn't have been given an update plus I can't now get an app to see my surgeon to ask what he's playing at until Aug!

    (sorry its so long) I'm just so angry and upset. I'm not guna sit and do nothing though :-)
    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.

  14. #14
    Join Date
    Oct 2008
    Location
    Sunshine Coast, Queensland, Australia
    Posts
    3,261
    I agree, it all sounds very unreasonable, and I'm doubtful about him as a man of integrity but I could be very wrong. My main concern is the limited number of surgeries he's doing. My surgeon does 2, sometimes 3, per week. Not being able to get a cord monitor also sounds very odd. My surgeon has a team which includes a monitor.

    I am still waiting to hear from my friend, I know she's been working night and day at the moment but it's Friday morning here and I usually hear from her Friday night. As soon as she lets me know, I'll give you that name.
    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

  15. #15
    Join Date
    Mar 2010
    Posts
    2,755
    Jenna,
    I'm so very sorry this has happened to you! I agree with filing a complaint. I would search out the BEST hospital, meaning one that has access to a cord monitoring machine at all times. I think at this point in your life, travel shouldn't matter so much as getting your back fixed. A 100+ degree curve is nothing to sneeze at and can put your life in jeopardy. I'm angry at the doctor just reading about what's happened. I agree that he may be afraid to do the surgery, so is in essence forcing you to go elsewhere. If the only reason he wants to keep you at that hospital is to bring in revenue, it must be one of the cutrate hospitals. We refer to them in the U.S. as "small town" hospitals. They are NOT places where you want major surgeries done. In fact, we have a rather nice small town hospital where I live with one doctor (orthopedic surgeon) that people come from all over the country to see. But I've gotten such shoddy care at the ER there that I will never go back to that ER. I'll do the hour drive even if it's a matter of life and death. I'd probably be better off waiting to get to the "real" hospital where there is a trauma center anyway. Enough about where I live. I'm just making a comparison. I wouldn't want to be "the one" to bring any measure of fame to a hospital. That would just make me feel like they didn't have the experience and are trying to prove they can do it. Sorry, if this sounds negative. I'm just greatly upset with your circumstances. I wish I knew how your system works so I could give some advice, but I don't. Please know that we are all pulling for you and hope you can get access to some real medical care SOON.

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

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