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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


I too have Chiari malformation 1 - I have been decompressed 8/2009 - Decompression will not relieve most of the problems that have developed if nerve damage has already occured. If you have a sx, then the doctor will be more likely to want to do surgery. I chose to do surgery because I could no longer walk because of the lack of spinal fluid. I had to hold onto walls to walk - I knew I needed to get it corrected. Plus I lost a lot of my bladder control. I am 33.

* When i lay flat on my back i get super dizzy & the room starts to go black.. like something is being "cut off" is this chiari related? is it dangerous?

[B]This can be chiari related, more than likely it is. I do not know if it is dangerous. I do not think just by itself it is. Is your spinal fluid blocked in anyway travelling from the brain to the spinal fluid?[/B]

* My symptoms suck but are thankfully more mild than some of the people that I read about online..... is it best to do surgery before things get worse.. or will they maybe not even get worse?

[B]From what I have read and researched proir to my decompression, they could stay the same, or get worse. It really I think depends on the amount of blockage you have to your spinal fluid.[/B]

*I have nearly no feeling on the outside of the front of my throat... and i feel like i always have to swallow... and it feels like someone is choking me all the time... what is this?

[B]This is also one of the side effects of Chiari, Some state they choke on food and drinks because of the throat closing in or being numb. [/B]

*Will this get worse?? And what will make it worse??

[B]As far as getting worse, only time will tell. Some suspect the head manipulation my a chiropractor may cause more damage to the Chiari. I have not seen one online that stated symptons did not increase after a adustment to the cervical spine. Usually they have seemed to increase a lot. I do not know what else would make it worse, except blockage of spinal fluid to the nerves.[/B]

* What activities do i need to avoid now?? I used to race atvs/dirtbikes prior to my diagnosis..b ut have since quit because my NS said a hit on the head could be bad........ I used to work out all the time.. can i still/? Since my diagnosis I have been afraid to do virtually everything cuz i dotn understand what activities will make my chiari worse?!? I feel fat and lazy! lol

[B]I would think the high risk activites would be a no go. But working out if your able to shouldn't be a problem. I would definatly consult a chiari specialist in your area, or consult with a chiari knowlageble neurologist and nerosurgon.[/B]

*I have non stop pressure in my face/throat/jaw... and if i sit very long at my desk @ work... it gets very hard to open my jaw.. it pops and grinds allt he time

[B]This probably is the same side that has the throat swollowing problem? This could be a result of pressure on the * When i lay flat on my back i get super dizzy & the room starts to go black.. like something is being "cut off" is this chiari related? is it dangerous?

* My symptoms suck but are thankfully more mild than some of the people that I read about online..... is it best to do surgery before things get worse.. or will they maybe not even get worse?

*I have nearly no feeling on the outside of the front of my throat... and i feel like i always have to swallow... and it feels like someone is choking me all the time... what is this?

*Will this get worse?? And what will make it worse??

* What activities do i need to avoid now?? I used to race atvs/dirtbikes prior to my diagnosis..b ut have since quit because my NS said a hit on the head could be bad........ I used to work out all the time.. can i still/? Since my diagnosis I have been afraid to do virtually everything cuz i dotn understand what activities will make my chiari worse?!? I feel fat and lazy! lol

*I have non stop pressure in my face/throat/jaw... and if i sit very long at my desk @ work... it gets very hard to open my jaw.. it pops and grinds allt he time

[B]This could be a result of the * When i lay flat on my back i get super dizzy & the room starts to go black.. like something is being "cut off" is this chiari related? is it dangerous?

* My symptoms suck but are thankfully more mild than some of the people that I read about online..... is it best to do surgery before things get worse.. or will they maybe not even get worse?

*I have nearly no feeling on the outside of the front of my throat... and i feel like i always have to swallow... and it feels like someone is choking me all the time... what is this?

*Will this get worse?? And what will make it worse??

* What activities do i need to avoid now?? I used to race atvs/dirtbikes prior to my diagnosis..b ut have since quit because my NS said a hit on the head could be bad........ I used to work out all the time.. can i still/? Since my diagnosis I have been afraid to do virtually everything cuz i dotn understand what activities will make my chiari worse?!? I feel fat and lazy! lol

*I have non stop pressure in my face/throat/jaw... and if i sit very long at my desk @ work... it gets very hard to open my jaw.. it pops and grinds allt he time

[B]This could be a result of the trigemal nerve not getting enough spinal fluid. Have you had a spinal fluid survey done?[/B]

*I have researcheda nd found your spinal fluid flows with your heart rate... so what happens if i raise my heart rate with cardio or something... it seem slike it would make the fluid flow harder.. will this cause a syrinx?
[/B]

[B]It will definatly make you dizzy if your heartrate goes up. My heartrate goes up anytime I do anything. Heat makes it go up, so I get dizzy in the heat (not such a good thing in Texas!) Really from what I understand a syrinx is only cause by a lack of fluid somewhere in the spine. It builds up and tries to "push" past the block.[/B]


I am of course no expert, this thing perplexes me to no end. I don't know for sure what is Chiari related or not. Constant battle to find a solution. For me, I had a hard time recovering from decompression - It wasn't a fun journey. I came home on a walker and had to use it close to 4 weeks. My balance is still off, I still have constant head pain (which suprisingly enough I did not have 'head pain' only pressure before sugery. I also have severe swelling of my optic nerves to the point of loosing vision so the surgery was a no brainer for me. The neurologist I have been working with suspects I have permant nerve damage to at least my trigemanl nerve, and possible the 2nd crainal nerve. ( i am guessing the nerve that controls sight and such - I am also under the care of a optoneurologist)

It will be a hard desision to decide or not decide to have surgery. For me, it improved some of my issues, but once the fluid came back... the symptoms that were hidden came to life.

I hope this helps you in your journey!





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