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acm1 & syrinx hi from scotland

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Unread 01-06-2013, 07:13 AM   #1
nicci
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Default acm1 & syrinx hi from scotland

hi, I have acm 1 and syringomyelia, had decompression surgery in 2003 but recently symptoms worsening to point of being worse than before surgery, has anyone else had this happen and if so what options were you given ie surgery or meds, thanks in advance
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Unread 01-08-2013, 06:21 AM   #2
whisper
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Hi Nicci,
I hope someone else can give you a better answer than I can.
I had surgery in 2011. It didn't work at all. However, symptoms are increasing pretty rapidly this year.
It feels like starting all over again. 1 step forward 5 steps back.
Though there are some I have heard have some pretty good stories, mostly I hear stories of disappointment.
I just don't think the medical community knows enough. (or anyone else for that matter) All treatments for these conditions are considered controversial even if docs do them often.
We all 'look' so normal and there aren't enough of us for them to pay much attention to it.
And kids...there is much more success and attention paid to kids with these diseases. And a greater success rate with treatment..I personally think its because they are still 'green' and can regrow bone and nerves and neurotransmitters and just generally heal faster than 'grown ups'.
But that's me babbling out my my own frustration..lol
I sure hope, with all my heart, that you find a better answer than I have.
supportive hugs to you.
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Unread 01-08-2013, 06:45 PM   #3
nicci
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Default drugs for nerve damage.

things have got so bad i have forgotten how bad i felt before 2003 if you know what i mean, im now 10 yr down the line and have never felt so bad. My doc and pain management clinic talk to me as if im 6yrs old they give me morphine and oxycontin and every nerve damage pill going and its me that ups and downs my meds myself!!!! I kid you not please help.I have stoped the morphine and oxycontin but diazepam seems to help???
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Unread 01-08-2013, 06:50 PM   #4
nicci
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Quote:
Originally Posted by whisper View Post
Hi Nicci,
I hope someone else can give you a better answer than I can.
I had surgery in 2011. It didn't work at all. However, symptoms are increasing pretty rapidly this year.
It feels like starting all over again. 1 step forward 5 steps back.
Though there are some I have heard have some pretty good stories, mostly I hear stories of disappointment.
I just don't think the medical community knows enough. (or anyone else for that matter) All treatments for these conditions are considered controversial even if docs do them often.
We all 'look' so normal and there aren't enough of us for them to pay much attention to it.
And kids...there is much more success and attention paid to kids with these diseases. And a greater success rate with treatment..I personally think its because they are still 'green' and can regrow bone and nerves and neurotransmitters and just generally heal faster than 'grown ups'.
But that's me babbling out my my own frustration..lol
I sure hope, with all my heart, that you find a better answer than I have.
supportive hugs to you.
you sound the way i feel x
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Unread 03-18-2013, 07:24 PM   #5
syrinx
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Quote:
Originally Posted by whisper View Post
Hi Nicci,
I hope someone else can give you a better answer than I can.
I had surgery in 2011. It didn't work at all. However, symptoms are increasing pretty rapidly this year.
It feels like starting all over again. 1 step forward 5 steps back.
Though there are some I have heard have some pretty good stories, mostly I hear stories of disappointment.
I just don't think the medical community knows enough. (or anyone else for that matter) All treatments for these conditions are considered controversial even if docs do them often.
We all 'look' so normal and there aren't enough of us for them to pay much attention to it.
And kids...there is much more success and attention paid to kids with these diseases. And a greater success rate with treatment..I personally think its because they are still 'green' and can regrow bone and nerves and neurotransmitters and just generally heal faster than 'grown ups'.
But that's me babbling out my my own frustration..lol
I sure hope, with all my heart, that you find a better answer than I have.
supportive hugs to you.
It is also possible that those with good outcome would not post here...

I had a mayor C spine surgery hoping for Cervical Myelopathy relief and it was no go. At this point I am not holding my breath on this stent surgery for my syrinx but I am getting increasingly desperate.
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