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Holy Fuck
Dec 24, 2016 2:09:44 GMT -5
via mobile
Post by Mets on Dec 24, 2016 2:09:44 GMT -5
Ok I'm not an SMA or MD dev so help me out here. Is a full fusion mean that your entire spine is fused with metal meaning you can't bend your back or neck at all? Basically they put a metal rod around your spine to prevent scoliosis and keep you straightened out. Doesn't go into your neck at all, and there are various end points on the lower end. Mine ends above the pelvis which allows my hips to turn, but some include the pelvis. I'm not really sure how it affects being able to bend your back, but I wouldn't have the muscle capacity to really do anything that would bend my back, so it couldn't be tested. Probably the same for most
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Post by Emma on Dec 24, 2016 2:33:36 GMT -5
Oh cool, thanks, So all you SMA dudes have good posture I have sort of shitty posture, but am trying to work to make it better so I don't look like a hunchback when I'm older. Also I have always felt bad for people in other countries with lesser medical care when they looked all slouched and knew it was disability related.
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Post by Kid A on Dec 24, 2016 2:36:19 GMT -5
Oh cool, thanks, So all you SMA dudes have good posture Definitely not. Lots of folks with SMA either lean forward or to the side and still have pretty severe scoliosis, even after the surgery. hephaestus is a perfect example, but he's definitely not the only one. It could have a lot to do with when the surgery is done, compared to the onset of scoliosis.
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Post by darthoso on Dec 24, 2016 2:38:18 GMT -5
Oh cool, thanks, So all you SMA dudes have good posture I have sort of shitty posture, but am trying to work to make it better so I don't look like a hunchback when I'm older. Also I have always felt bad for people in other countries with lesser medical care when they looked all slouched and knew it was disability related. I went from rag doll to soldier at attention.
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ynwa
Junior Member
Posts: 51
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Post by ynwa on Dec 24, 2016 4:11:25 GMT -5
Oh cool, thanks, So all you SMA dudes have good posture I have sort of shitty posture, but am trying to work to make it better so I don't look like a hunchback when I'm older. Also I have always felt bad for people in other countries with lesser medical care when they looked all slouched and knew it was disability related. I went from rag doll to soldier at attention. Jesus... take it to PM's, bro.
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Post by Corey on Dec 24, 2016 17:36:36 GMT -5
Ok I'm not an SMA or MD dev so help me out here. Is a full fusion mean that your entire spine is fused with metal meaning you can't bend your back or neck at all? I think its more of a twisting motion that it prevents. After surgery I look better but there is still a huge curve, maybe 60 degrees or so. When sitting comfortably my shoulders are not even. Other than that I look mostly straight. Its much more noticeable when I take my shirt off. My belly button is a bit to the side and you can tell I put a lot more weight on the left side of my body than the right
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Q
Full Member
“Follow your bliss." Joseph Campbell
Posts: 157
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Post by Q on Dec 26, 2016 19:05:16 GMT -5
My MDA neurologist mentioned this to me five years ago when the first clinical trials first started. At that time he said that the game plan was to first stop the progression of SMA and then repair the gene. My neurologist retired in July and I haven't been to the new clinic so I'm not sure what's next. There have a few local news stories about this
It will be interesting to see how this will affect adults with SMA. Even though there are side effects I will most likely try Spinraza. I am curious how they will inject this into my spinal fluid because I have Harrington rods (yes, two rods) and fusion.
IMPORTANT SAFETY INFORMATION
Increased risk of bleeding complications has been observed after administration of similar medicines. Your healthcare provider should perform blood tests at baseline and before each dose of SPINRAZA to monitor for early signs of these risks. Seek medical attention if unexpected bleeding occurs.
Increased risk of kidney damage, including potentially fatal acute inflammation of the kidney, has been observed after administration of similar medicines. Your healthcare provider should perform urine testing at baseline and before each dose of SPINRAZA to monitor for early signs of this risk.
The most common side effects of SPINRAZA include upper and lower respiratory tract infections, complete or partial collapse of a lung or lobe of a lung, constipation, headache, back pain, and post-lumbar puncture syndrome.
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Post by happyface2013 on Dec 27, 2016 13:44:06 GMT -5
Oh cool, thanks, So all you SMA dudes have good posture Definitely not. Lots of folks with SMA either lean forward or to the side and still have pretty severe scoliosis, even after the surgery. hephaestus is a perfect example, but he's definitely not the only one. It could have a lot to do with when the surgery is done, compared to the onset of scoliosis. The surgery is usually delayed for as long as possible to allow for growth in the spine, for instance during your teenage years. It's a very rough operation to go through. People with arthrogryposis can also be affected by severe scoliosis.
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Q
Full Member
“Follow your bliss." Joseph Campbell
Posts: 157
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Post by Q on Dec 29, 2016 1:00:31 GMT -5
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Post by darthoso on Dec 30, 2016 15:01:42 GMT -5
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Deleted
Deleted Member
Posts: 0
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Post by Deleted on Dec 30, 2016 19:32:16 GMT -5
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Post by darthoso on Dec 30, 2016 19:43:37 GMT -5
No one knows, oldest to get it during trials was 15.
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Post by wonk on Dec 30, 2016 20:18:03 GMT -5
Holy hell! $125,000 per dose! Without knowing the costs to develop a drug with a small market, or knowing how many drugs never make it to market, we can't know what they need to charge. However it seems extreme
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Holy Fuck
Dec 30, 2016 20:22:56 GMT -5
via mobile
Post by Mets on Dec 30, 2016 20:22:56 GMT -5
I wouldn't necessarily agree with that. If it's working for older kids, there's at least some reason to believe it could work for adults. If they knew it wouldn't work, it wouldn't have been offered.
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Post by malibu on Dec 31, 2016 0:02:25 GMT -5
So we all agree this will have no effect on adults with SMA? If it costs that much it better fucking work
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