Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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Katie-Davison 05/06/2011

Has anyone had heart issues along with chiari? I have an undiagnosed heart condition that may have caused me to pass out multiple times since surgery (and four times prior.. but it subsided for about two months after surgery) and giving me chest pains.. Last week I had a Reveal Loop Recorder implanted in my chest.. Seems like Chiari may have masked a lot of my symptoms.. or vice versa... who knows.. I really wanna be done with hospitals.. Just curious if anyone has had problems like this.. or with syncope at all.. I would appreciate any responses.

Thanks, God Bless!

Katie

deleted_user 05/07/2011

I have had heart issues before and after my CM surgery. I first had techycardia, then Atrial-fibulation, then recently brachycardia. Most of the time I have it with minimum symptoms, but when i take certain medications my heart is irregular dangerously! I have never heard of Reveal Loop Recorder. How is that compared to the regular halter monitor? I had one for 30 days. I had passed out once, but felt I could pass out several times a week. You know Chiarians have drop-attacks? Have they explored that?

deleted_user 05/10/2011

I have POTS which causes my blood pressure to drop and tachycardia..the weird thing is it does fluctuate and I had a baby 3 mths ago and it's normal now. But it used to be severe and I also had episodes where everything would go black and I'd almost pass out. I would get chest pains and short of breath very easily also. Luckily my heart was tested-structurally it was normally. This is known to coincide with CM.

Here is a link that gives extensive information on POTS and the symptoms..It was written by Dr. Grubb who is one of the best POTS drs in the nation

http://www.dinet.org/symptoms.htm.

I think the compression or the CSF blockage affects the central nervous system, thus making our blood pressure and heart rates all out of whack. Just an idea.

I know what u mean-I'm sick of hospitals too..

deleted_user 05/10/2011

Katie,
I know what you are going through. I went through Six years of passing out (syncope) the doctors even took my license away. Come to find out that after my CM decompression, the surgeon said that the Cerebellar tonsil (left) was wrapped around my brain stem and that is what caused my syncope. It was really scary....up one minute and then ....I would be getting slapped in the face looking up at the ceiling and usually bruised up in some way. I would always have low blood pressure too. Did they ever do a tilt table test? Normally Chiarians fail becuase of the condition. I failed 2 times once before and then once after sugery,...it wasnt till about 1 year after surgery that I finally passed.
I also had heart issues.....I am on Diamox and Spirolactone. both are draining on the body of Potassium....I thought I could keep up with it diet wise,,,,but, I ended up with severe chest pains....thinking that I was having a heart attack. Found out that My potassium was too low and can cause those issues. Now I am on 2500mg of potassium a day!
Yeah me.....So over this condition. It is my frenemy ....My friend because I have to live with it and my enemy becuase I cannot stand to live it with.

Good Luck and god bless.

* Not sure if it helps ...just another perspective!

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