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10-12-2010, 08:06 AM
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#1 |
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arnold chiari or syringomyelia anyone???
these are conditions of the spinal cord...
pretty rare... and... sometimes hard to diagnose... i would love to be able to talk to someone in my community with the same problems as myself... i have a couple of forums and support places i can turn to... but... there is a difference... i dont care how comfortable in my skin i am... i have times that i catch myself before i say something about family or such that i dont want to have to feel... |
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10-12-2010, 08:09 AM
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#2 |
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Senior Member
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Butch, Preferred Pronoun?:
People call me by my nic name. Relationship Status:
Not Single, Not Desperate. 
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I havent ran into other problems with my back but I did have spinal surgery and all I know is it takes time to heal!!!
__________________
Faith is not belief without proof, but trust without reservation. It is said, " Some lives are linked across time..... Connected by an ancient calling that echoes through the ages "...... |
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10-12-2010, 08:15 AM
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#3 | |
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Quote:
only surgery i have had is to make my little hole in my head bigger... |
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10-12-2010, 09:25 AM
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#4 |
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Italian Stallion
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DNA Usually... Join Date: Oct 2009
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I'm going to share my story...
I have had my share of MRIs, Cat Scans, etc. over the course of the years for lumbar and spine issues. Problematic symptoms have always been neck issues, dizziness, occasional vertigo, intermittent headaches, and a few months ago I've experienced eye pressure for a week or so. The most recent MRI I had was back in June and showed that I i have low lying cerebellar tonsils, and have Chiari One Malformation which usually often shows up in childhood or in adulthood (which is my case). I'm sure folks who have this have this condition have different variations of symptoms and, there are several types of this. Trust me it's not pleasant when you have all these symptoms going on at the same time. When it happens out of the blue, mostly what I can't deal with is the dizziness and vertigo, it sucks and again can just happen out of nowhere. One day you're fine and the next you feel as though your equilibrium is off and your head is in the clouds. Like you have a constant alcohol buzz going on. Some folks have always joked around and said "that would be cool". I tell them no, it's not cool when you have to experience this for weeks on end and feel lightheaded. At least with alcohol you can control your intake and your "buzz effect". I don't wish this on anyone. So it's not cool. You don't feel like yourself and you start to trace your steps in your head. Did I lift something and threw something off? Did I sleep the wrong way and pinch a nerve? Is it allergies? You question yourself. Sometimes you feel like you're going crazy, especially when you know your body. Don't let anyone tell you otherwise. Be persistent with doctors that something isn't right. This is the case for anything, not just this diagnosis. For me, over the years, I've learned to take advantage of the good days and just deal with the bad days. Thankfully, there have been a ton of good days. Life goes on and when I'm feeling good I'll continue to do my thing. When I'm feeling crappy I try and deal and do the best I can. Be well. -Scorp- |
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10-12-2010, 09:33 AM
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#5 | |
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thank you scorp...
i know its not easy... i have been wanting to start this thread for a loong time... and just got up the nerve to out myself... they found my ACM a long time ago too... after lots of dr visits but... the syrinx were just found a couple of years ago... have they suggested the surgery to you so that you could release the pressure on your spinal fluids? it isnt a bad surgery... and if i couldve had it b4 the cysts formed i woulda jumped at it... be careful with yourself and if you start experiencing numbness or pain in your joints or glandular swelling or lots of migraines... and they dont approach you... i would look into it on my own... again... thank you scorp... the world is sometimes smaller than i realized... wonder if there is anyone else here... Quote:
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10-12-2010, 09:47 AM
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#6 | |
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Italian Stallion
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You're welcome Rlin. Thank you for starting this thread.
I'm a private kinda person with some things, but I thought it was brave of you to post this and the title <of course> caught my eye, so I wanted to share my experience(s). And yes, I'm sure a ton of us have a lot more common than expected in many ways, shapes and forms. You never know, maybe someone else will come across this thread and post. In my case,my Neurologist told me that he doesn't want to go down the surgery road with me unless things get worse over time. Hopefully that won't be the case, but one never knows now do we. I guess time will tell and I just hope for the best. Also, the recuperation of the surgery (depending on the extremity) could be a very long recovery as long as a year or so. Quote:
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