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Old 29-04-2010, 10:16 AM
Kaz Kaz is offline
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Default Not enough answers!

I have over the years a 53, 45, 48 degree curvature. (apparently this can alter due to the way we stand at xray) ??. Was offered rods when I was 18 only because of possible future cosmetic reasons tho. No other explanation was given, but opted out šause recent to that, an Uncle just had back surgery and it went wrong. I don't believe you would know I had this severity unless I point it out. I guess I'm sort of lucky but I know it's there and have had no problems except the pinching in the neck when I lifted wet blankets out of a bathtub that started the ball rolling in the 1st place.
I am now 43 and in the past 5 years have had a head tremor start that only others notice. I don't. Missing heartbeats and cardia ventricular stuff. At times I have pain in the centre of my back that won't allow me to breath without excruciating pain so I hunch over and all is well enough for me to ring for an ambulance. If I rake the yard or mop the house. 2 days later, I'm bound to a bed or chair. All this stuff is intermittant but I am very suspicious that my scoliosis is playin a major roll ere. Went to the Specialist, (I think this person has had enough of the job these days). He/she snapped and said "Scoliosis dosent cause pain". You have arthritis in your spine - (he/she pointed right at the major curve). Fusion was the option. I asked (cause I was scared), if I can live with this intermittant pain, can it still be done in the future if it becomes unbarably constant. He/she said, well don't ask me in 10 yrs cause I won't be here. My husband asked if it could impact on any organs such as the heart. Answer "why should it"? >>>>OMG.
It was so short and detached. I left scared and crying holding my children and husband that know what I go thru and were present in the room. I don't know if I ever want to go back. The Scoliosis Specialist visits our region every 6 mths and suppose to be the best around. I am suppose to be examined every 2 yrs but ...what for?
If this has no impact on your body whatsoever, as I am led to believe by the best around then why do GP's continually send me back to the Specialist with their ob's. I don't get any of this.

Last edited by Kaz; 29-04-2010 at 10:45 AM. Reason: Chose not to use any specific info on the specialist he/she.
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Old 29-04-2010, 11:42 PM
Rodverta Braefusion Rodverta Braefusion is offline
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Default Re: Not enough answers!

Hi kaz, Welcome to the forum. I was sorry to read about your situation. It is very unfortunate that at this point in time you only have the opinion of one visiting Doctor. May i ask, is he/she an Orthopaedic or Spinal Surgeon? There is a difference, i strongly believe. I can even tell you that my first opinion with a spinal surgeon was different to the opinion of a scoliosis surgeon. I am assuming that you live in the country (correct me if i'm wrong). If you can, seek another opinion with a Scoliosis Surgeon now while you are young and hopefully he will be able to give you some insight. I had very bad pain from December 2006 and had several injections over the period of Dec 2006 until surgery in June 2009. I sincerely thank my ever so helpful Neurosurgeon who tried to keep my pain under control and for recommending me to my scoli surgeon, who did my surgery. Unfortunatley some doctors don't have the empathy required to be in this field. If you have any questions, please do not hesitate to ask.
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Old 23-04-2011, 12:19 PM
purpletrish28 purpletrish28 is offline
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Default Re: Not enough answers!

Hi Kaz,
I am sorry to hear of your unpleasant experience. I must say that we went to a visiting orthopedic surgeon when my daughter was first diagnosed with scoliosis (similar size to yours). I got a very similar reaction and felt that the opinion I was given could not be trusted due to the dis-interest in all options available. We have since looked into other avenues and although the end result still may be the same at least we have had more information and options to base our decision on.
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Old 23-04-2011, 03:36 PM
katherineP katherineP is offline
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Default Re: Not enough answers!

Hi there,
It's important you get a second opinion and that you see a scoliosis specialist. Some doctors just don't understand our pain. It's crucial you find a doctor you feel comfortable with and are at ease with. Please do not hesitate to ask me anything. Have you done a recent xray and ct scan to see if there is a change in your spine. Good luck Kathy
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Old 23-04-2011, 03:39 PM
katherineP katherineP is offline
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Default Re: Not enough answers!

Sorry forgot to say when I saw my surgery who was brilliant he did say for me my scoliosis will progressively get worse I'm 40 yrs old and that my quality of life will diminish and the curve in my spine does affect your organs. I made the huge step to have my surgery feeling great pain free. It's been extremely hard but well worth it .
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Old 02-05-2011, 12:10 PM
havik_racing havik_racing is offline
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Default Re: Not enough answers!

he said scoliosis doesnt cause pain? i have to disagree i'm only 22 years old and work as a landscaper, and wow do i come home with such a sore back, it sucks
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Old 04-05-2011, 04:44 PM
sirfur61 sirfur61 is offline
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Default Re: Not enough answers!

I guess the lack of pain is why myself and many others resort to huge surgery - three of them in my case. I had the" what do you expect with a back like that" thrown at me by so many doctors - along with more painkillers!! After years of poor treatment," never get worse" and constant pain I went for surgery - only a month since 3rd op so not sure yet how I feel. Persist - the pain management unit helped me and this site would have helped had I known!
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Old 04-05-2011, 06:06 PM
Dom's mum Dom's mum is offline
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Default Re: Not enough answers!

Hi Kaz,
I would say definitely get another opinion - I know it may be difficult if you are isolated but do some research and find the right one to go to. Depending on where you live I am sure the great people on here would be able to privately recommend specialists. As far as affecting organs goes my mum has scoliosis and at 81 broke four ribs in a fall. Her lung subsequently collapsed and the specialist told me they had extra trouble getting it reinflated due to her scoliosis and the fact that she had less space on that side of her body. I know she was 81 but her recovery was more difficult.
There are some wonderful doctors but sometimes youhave to stand up for yourself or have someone with you who will be your advocate. Go in too with prepared questions. Good luck
Annette
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