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Old 21-03-2013, 04:30 AM
Plmor2 Plmor2 is offline
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Unhappy Never been reviewed

Hi This is my first post. I was diagnosed with SD , scoliosis and kyphosis at around 17 years. I am now 57 and have degenerative spinal disease but never actually had a review of my scoliosis. I know one X-ray years ago said it was moderate level. I have had constant pain since diagnosis but just battled on and raised a family. Was diagnosed with severe cervical spinal cord compression 2 years ago with mild lumbar compression. Constant pain but don't take pain killers anymore. Use physical activity when I can. I have given up work 6 months ago as pain increased. I have nerve blocks as required for cervical & lumbar pain but my scoliosis pain is mid back and nerve blocks don't work. No Dr has ever mentioned my scoliosis even though it was mentioned in the X-ray report. It flares up every few weeks but I have constant pain which is now spreading round to front of rib cage. Wondering if I should ask for review of scoliosis. I keep thinking what's the point? They are sick of my coming to see them re pain. You begin to think its all in your head even though you know it's not. I have been thru a pain management program and found that helpful as it helped me get off drugs. I can't take anti inflammatories as I am allergic to them. Just tired of pain!!!! No sleep for 2 days due to pain. No one can understand what you go thru unless you experience it. I think my GP is sick of me as she can't do any more. Sorry for the long rant.
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Old 21-03-2013, 06:35 AM
rosie rosie is offline
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Default Re: Never been reviewed

Hi
You poor thing. Yes a scoliosis review should be in order I think. You have to pressure some doctors to get anywhere. You cant go on with that pain. Where do you live?
Rosiex
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Old 21-03-2013, 11:08 AM
Eliz Eliz is offline
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Default Re: Never been reviewed

Don't give up on yourself! For your own sake and your family!
As you say, your GP will probably be sick of you, so if you ask for a referral to one of the scoliosis specialists in this websites directory they will be happy to send you. Make sure you tell them how much pain you are actually in so they get a fast appointment!
Don't worry about offending or upsetting other people, this is your own body and you need to stand up for yourself, literally.
Good luck, Liz
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Old 21-03-2013, 12:06 PM
Plmor2 Plmor2 is offline
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Smile Re: Never been reviewed

Thanks ladies it does give you motivation to go on when someone responds kindly. I think you are right. I need to have a complete check by someone who knows about this. Have appointment with GP next weeks so will pick a specialist and get referral. Once again thanks I needed that.
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Old 21-03-2013, 01:39 PM
rosie rosie is offline
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Default Re: Never been reviewed

Hi again
Let us know how you go with your GP. You really need to talk to a specialist that works with scoliosis patients as GP are only GP's (dont mean to insults GPs) but scol specialists are up with the latest med knowledge....fingers crossed for you that you can get all this sorted out
Rosie
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Old 21-03-2013, 11:21 PM
Plmor2 Plmor2 is offline
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Exclamation Re: Never been reviewed

I have a question. I have a specialist who monitors my spinal cord compression. He is a neuro surgeon and his rooms rang today about my next appointment in July. I requested a full spine MRI instead of just neck and lower back . They said that will be fine. I am wondering though should I see one of the drs on this list as well. My neurosurgeon does spines but not specifically scoliosis. It seems a bit of a cross over though having another specialist to review the scoliosis. My dr is at the (hospital name removed by admin) where some of these practise as well. Should I see the two Drs or stay with mine? Mine can be a bit offhand about pain etc. says he doesn't operate for pain as there are no guarantees. I don't wont Him to just brush my scoliosis aside cos he's not interested in it but is 2. Drs a bit of overkill?
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Old 22-03-2013, 01:55 PM
Eliz Eliz is offline
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Default Re: Never been reviewed

Hi,
I can only speak from my experience but I would suggest it's time for a second opinion anyway if you have hit a brick wall. My son had surgery at that hospital 4.5 weeks ago,will send private message with details. Plain standing xrays give more information and enable curve measurement etc so I would be spending money on that and scoliosis specialist first. They would probably like to see any xrays you have had previously.
If you get appointment before July then you can decide at last minute if you still want to see neuro as well I guess.
Liz
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Old 22-03-2013, 07:59 PM
Plmor2 Plmor2 is offline
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Smile Re: Never been reviewed

Thanks ElizThat makes sense. Thanks so much and I hope all goes well for your son.
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