SM - time

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SM - time

Postby sparks42 » Wed Jul 18, 2007 2:04 pm

I've heard a great number of times that SM can lead to paralysis.

I was just wondering how this happens. I know how the SM causes it....I'm just curious are you SUDDENLY paralyzed...or does this somehow...eventually happen....

Same question about loss of bladder control. Do you SUDDENLY lose control?....or does it happen over time?[/i]
- Syringomyelia, Scoliosis, Spinal Fusion, no CM
- 24 year old female
- London Ontario Canada
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sm

Postby razzle51 » Wed Jul 18, 2007 2:23 pm

Or it may not happen at all . Think positive. :lol:
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby SMLady » Wed Jul 18, 2007 2:31 pm

Those are good questions. I have wondered the same thing. I have heard, and I don't know if this is true or not, but paralysis can come on suddenly. I try not to think about it. I just remind myself that there are no guarantees in life, and I could just as easily be paralyzed by some other means (accident, etc).
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Postby cash71 » Wed Jul 18, 2007 5:06 pm

I think this would be something that would be different for everyone. I pretty sure that my syrinx has been around for a long time (like decades) and it will probably take decades more for it to get bigger. So I'm going with mine being slowly progressing :D

As far as bladder issues, I've never had them before but now in the last several months I am starting to have some "minor" issues. I have to go urgently sometimes and sometimes when I get there I can't go and it takes forever to finally be able to pee. Also some days after I go pee I have a weird tingly, nerve-type sensation around my bladder for an hour or so. I think that these are early signs of bladder dysfunction. Dr. B feels these are due to my OTC although no one in Canada believes in OTC so i am kinda stuck.

I have an upcoming urology appointment and urodynamic testing appointment to try and determine if these are truly signs of a neurogenic bladder starting so that I can get ammunition for getting treatment for my OTC

HTH,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby angie7 » Wed Jul 18, 2007 8:39 pm

I would say *if* paralysis would happen, it would be a slow progression not sudden unless there was some type of traumatic injury.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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Postby socialdkitty » Thu Jul 19, 2007 12:27 am

Her question is what worries me and keeps me up at night too! Are there any kind of statistics or anything like that which has a percentage of people with SM that become paralyzed or anything at all like that?
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Postby svennobalance » Thu Jul 19, 2007 10:54 am

When I was told I needed emergency surgery I think they said the syrinx was blocking CSF flow and expanding the spinal canal? and that was what made me a extremely vulnerable to paralysis.

So I imagine if the csf flow is ok, paralysis is not a likely consideration.

AND worrying about things that haven't happened is just too much for the head to handle when the existing stuff is keeping you up at night (in my case, even w/ good sleep meds I am up at 3am worrying about my bad leg and exercising, and going out with people and expending to much energy).
Gabriel
chiari, decompressed dec 05, syrinx, hydro, baclofen pump October 2007, rev jan '08, VP shunt April 2009
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Postby cash71 » Thu Jul 19, 2007 11:34 am

There aren't statistics about who will become paralyzed b/c there aren't any long term studies done about sm or cm. We need more research done that is for sure.

But worrying about things that you have no control over is about as productive as banging your head against a wall. Our life on this earth has always been tenuous. We could be hit by a car, crash in a plane, burn in our sleep, etc etc etc. There are no guarantees in life whether you have sm/cm or not. I know it is hard but you really need to put that worry completely out of you head. Focus your energy on things that you can control instead. Stressing about things you can't control is only going to make your symptoms worse. I know when I get stressed I feel the worst.

HTH,

Caroline
Be kind for everyone you meet is fighting a harder battle (Plato)

Syrinx C3-T9, CM zero, OTC, cranial settling, dysautonomia/POTS, and ?EDS

see my blog for more info: http://www.chiariandsyringomyeliaincanada.blogspot.com/
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Postby angie7 » Thu Jul 19, 2007 12:41 pm

cash71 wrote:But worrying about things that you have no control over is about as productive as banging your head against a wall. Our life on this earth has always been tenuous. We could be hit by a car, crash in a plane, burn in our sleep, etc etc etc. There are no guarantees in life whether you have sm/cm or not. I know it is hard but you really need to put that worry completely out of you head. Focus your energy on things that you can control instead. Stressing about things you can't control is only going to make your symptoms worse. I know when I get stressed I feel the worst.


I couldnt find an icon for it but <applause> <applause> <applause>

You took the words right out of my mouth. Stress only makes our symptoms worse. Why worry about something that you dont know will happen? That is like worrying about if you are going to die in a car accident or get hit by bus to the point you are losing sleep? We cant predict what happens to us in the future and just worrying yourself sick about it, isnt going to make it any better.

I have learned since being dx 3 years ago at 24 y/o, that life is too short to worry about such things. I live each day to the fullest. I wasnt sure if I could have kids b/c of my many problems, and I have beautiful twin little girls that are the light of my life. There are alot of things that I have accomplished in my life since being dx to even give paralysis a second thought. If it happens, it happens, if it doesnt GREAT! But who knows what the future holds so I just let the worry ago and enjoy each day of my life and tell everyone around me how much they mean to me.
Mama to 4 y/o ID twin girls (2006)
CM 0, C5-T1 syrinx, Scoliosis, Hypotension; PFD 2004
Deg Disc C4/5,Cervical Kyphosis-repaired 07 w cadavar bone graph & plate w 4 screws
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ditto

Postby razzle51 » Thu Jul 19, 2007 1:07 pm

DITTO ANGIE :lol:
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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