arnold chiari or syringomyelia anyone???

rlin · 10-12-2010, 08:06 AM

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...

MysticOceansFL · 10-12-2010, 08:09 AM

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!!!

rlin · 10-12-2010, 08:15 AM

Quote:

Originally Posted by MysticOceansFL

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!!!

theres a couple of problems with my spine itself... disc things that are unrelated... but bothersome just the same...
only surgery i have had is to make my little hole in my head bigger...

Scorp · 10-12-2010, 09:25 AM

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-

rlin · 10-12-2010, 09:33 AM

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:

Originally Posted by Scorp

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-

Scorp · 10-12-2010, 09:47 AM

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:

Originally Posted by rlin

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...

rlin · 10-12-2010, 10:24 AM

the surgery i am talking about is a posterior fossa reconstruction....
they make the little hole in your head where the tonsils and the cord go thru... they make it bigger...
its a nasty ass scar... but... the recoop time wasnt too bad... i think total i missed a month of work...
the goal of it is to release the pressure so your CRF doesnt start to harden...
after that happens nerve damae is pretty severe... and it wont reverse past a certain point..
so... yeah.. make sure you keep an eye out for stuff... like maybe something that feels like carpal tunnel... or tingling or burning or joint pain... or weird nerve happenings...
numbness... etc...
that way they could take care of you b4 it proresses to the syringomyelia stage...
again... thank you...

Scorp · 10-12-2010, 10:33 AM

I've had the tingling stuff off and on for many years..fingertips, back of neck...

Just shoot me now...I'm a mess....

LOL!

Quote:

Originally Posted by rlin

the surgery i am talking about is a posterior fossa reconstruction....
they make the little hole in your head where the tonsils and the cord go thru... they make it bigger...
its a nasty ass scar... but... the recoop time wasnt too bad... i think total i missed a month of work...
the goal of it is to release the pressure so your CRF doesnt start to harden...
after that happens nerve damae is pretty severe... and it wont reverse past a certain point..
so... yeah.. make sure you keep an eye out for stuff... like maybe something that feels like carpal tunnel... or tingling or burning or joint pain... or weird nerve happenings...
numbness... etc...
that way they could take care of you b4 it proresses to the syringomyelia stage...
again... thank you...

rlin · 10-13-2010, 08:55 AM

Quote:

Originally Posted by Scorp

I've had the tingling stuff off and on for many years..fingertips, back of neck...

Just shoot me now...I'm a mess....

LOL!

i have seriously thought of amputating my arm... for real... but... i know damned well that my luck would mean that i would experience all those phantom things... so i would just be without an appendage and still flipn have the pain...

Scorp · 10-13-2010, 09:11 AM

Exactly...However, having a bionic arm could have been cool

Quote:

Originally Posted by rlin

i have seriously thought of amputating my arm... for real... but... i know damned well that my luck would mean that i would experience all those phantom things... so i would just be without an appendage and still flipn have the pain...

katsarecool · 10-13-2010, 09:19 AM

I have chronic pain (from several sources) but hestitated to mention it. But why not? Sorry ya'll are having to deal with these health issues.

rlin · 10-29-2010, 11:13 PM

Quote:

Originally Posted by Scorp

Exactly...However, having a bionic arm could have been cool

oh hell yeah... do they have the technology? do i have 6 million dollars? that is the question...

10-12-2010, 08:06 AM	#1
rlin Member How Do You Identify?: human Join Date: Mar 2010 Location: nomad Posts: 712 My Photo Gallery Thanks: 1,450 Thanked 1,190 Times in 451 Posts Rep Power: 1004848	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...

10-12-2010, 08:09 AM	#2
MysticOceansFL Senior Member How Do You Identify?: Butch, Preferred Pronoun?: People call me by my nic name. Relationship Status: Not Single, Not Desperate. Join Date: Jun 2010 Location: Florida Posts: 3,833 My Photo Gallery Thanks: 4,645 Thanked 4,035 Times in 1,720 Posts Rep Power: 21474853	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 "......

10-12-2010, 09:25 AM	#4
Scorp Italian Stallion How Do You Identify?: DNA Usually... Join Date: Oct 2009 Location: In a van, down by the river.. Posts: 2,702 My Photo Gallery Thanks: 1,557 Thanked 4,721 Times in 1,270 Posts Rep Power: 21474853	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-

10-12-2010, 10:24 AM	#7
rlin Member How Do You Identify?: human Join Date: Mar 2010 Location: nomad Posts: 712 My Photo Gallery Thanks: 1,450 Thanked 1,190 Times in 451 Posts Rep Power: 1004848	the surgery i am talking about is a posterior fossa reconstruction.... they make the little hole in your head where the tonsils and the cord go thru... they make it bigger... its a nasty ass scar... but... the recoop time wasnt too bad... i think total i missed a month of work... the goal of it is to release the pressure so your CRF doesnt start to harden... after that happens nerve damae is pretty severe... and it wont reverse past a certain point.. so... yeah.. make sure you keep an eye out for stuff... like maybe something that feels like carpal tunnel... or tingling or burning or joint pain... or weird nerve happenings... numbness... etc... that way they could take care of you b4 it proresses to the syringomyelia stage... again... thank you...

10-13-2010, 09:19 AM	#11
katsarecool Member How Do You Identify?: Femme Preferred Pronoun?: She, Her, Woman Relationship Status: Single Join Date: Oct 2010 Location: Between Athens and Atlanta, Georgia Posts: 1,236 My Photo Gallery Thanks: 3,849 Thanked 1,765 Times in 734 Posts Rep Power: 323365	I have chronic pain (from several sources) but hestitated to mention it. But why not? Sorry ya'll are having to deal with these health issues.