Chiari Malformation Community
update on appointments
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update on appointments

hi all, hope you are all well,

i havent been on here for a few weeks, but i needed some support,
i went last week for a pre op appointment for a camera to be insurted into my stomach to rule out, any womens problems, sorry i cant remamber what that procedure is  called.
well they have decided im too high of a risk, my heart rate was spiking and my blood pressure was high, they want me to get my heart checked before they do the surgery,

i was very angry, everyone says they can here there is a problem but no one does anything.

well two nights over the weekend i went up to the hospital, due to chest pains, shortness of breath, heart rate spiking, just feeling bad, so my husband made me go, i was put on amoniter, had  ECG, xray, bloods, so i asked to to thyroid tests, every was clear, expect my blood pressure was high, and heart rate spiking, (this was first night) oh and my heart xray showed my heart was alittle small. (dont know if it applies)
but there was nothing to say it was my heart, they talked bout a stress test,

the second night, i went back up, my blood pressure and heart rate was good, then they decided to keep me in, bacause i had come in the night before, the same tests were done, everything came back clear, i went to so urine, so i walked off the toilet, by the time i came back my blood pressure was up and heart rate increased, and chest starting hurting, i was then sent home, and told to go back to GP.

im very frastrated, i feel bad most days and my heart i can feel and hear in my ears, im still getting out of breath, and soooo tired.

i was wondering if there is a chance that i have a blockage of fluid in my spine that could be causing these problems?
they cant seem to find any damage to my heart to show its my heart, but as far as im concerned, a 10sec ECG is not long enough,

im seeing gp in acouple of days, but im concerned, its getting more regular,
is this a problem with chiari or do i have to look at MS again???
i go for MRIs in the next few months,
thankyou  
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1059090_tn?1254470401
opss sorry i forgot to add, i have alot of pressure in neck and head feels like it could pop.
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620923_tn?1405964489
Hi...sorry u r having these issues and the royal run around by drs...it is very frustrating.MS and Chiari have similar symptoms, so only tests can rule them out.

But all the symptoms u mention could be chiari....ur vagus nerve may be involved causing the heart issues....

It is also possible to have dyaustonomia which can affect BP.

I had to have my heart checked out as well with a echo cardiogram and ultra sound of both carotid arteries.The cardio dr didn't feel the stress test was needed after the echo....

I would suggest getting the tests done to rule out this issue.

"selma"
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Avatar_m_tn
Are you having any other Chiari related symptoms? A Syrinx in your spine shouldn't effect your heart. A Disc Prolapse pushing on the spinal cord can cause some chest related pain and anxiety from that can be intense. The Vagus nerve Selma mentioned is a cranial nerve originating from the brain stem and Chiari can affect your heart as well as your respiration. Those autonomous functions are provided in general by the brain stem.

Before my decompression I had regularly occuring bouts of tachyardia. Post surgery I no longer have issues with it. I would also suggest getting more cardiac tests done. A nuclear stress test is more of a pain in the butt than anything else and will further lead you to a diagnoses.
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1236570_tn?1276742125
I also had to have cardiac clearance prior to my surgery. I was having bouts of rapid HR and my ECG showed a 1st degree AV block, so they sent me to a cardiologist. I had to wear a monitor for two weeks (called a king of hearts) and I had a echocardiogram. Being a cardiac sonographer myself it was really weird (and quite embarrassing) to go thru. A Stress Echocardiogram would show the structure and function of your heart to see if there was a structural reason for the heart rate issues and the treadmill pert would be helpful to see how your heart responds to stress, its similar to the stress your heart would endure during surgery. We do A LOT of pre-op stress tests at my work, it's really quite common.

Good luck I hope all goes well!!
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1059090_tn?1254470401
i do have alot of muscule weakness, i get mild headaches, eyes have gotten worse, i get tingling/numbness in face and limbs, ive started twitching more lately, i have memory lapses, i feel sick often, have alot of aches along shoulders back chest, i cant seem to finish weeing properly, cordination goes out, i get dizzy spells, i feel my head is going to explode at times, and there is other symtoms (symptoms),
my last MRIs showed early stages of MS, as well as 8mm Chiari malformation,
i did have a 4.1cm cyst compressing my spinal cord, in the thoaic spine, that was removed,
somedays im so weak i cant walk more than afew steps, before i have to stop, my muscules in my forearms and legs feel like i have done a week straight of heavy weights, i cant lay in bed now without my arms and legs ache, and tingle,  (like holding your arms up above your head for to long)  
im also having sexual difficuities, and pain,

its so hard to know which one is causing more problems MS or CHIARI,

im having more MRIs done in the next couple of months, so im hoping it will show one of them worse, im unsure weather chiari causes muscule weakness, surgeon looked at me sideways when i said it, i feel doomed at the moment, my pains have changed, im sick of being sore, but im preaching to the choir,
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1059090_tn?1254470401
sorry and also, so tired that i dont want to move,

i also had antinuclear testing i had a positive test, second test was negative, im just a mystery to the medical world, hahahha oh how i could just cry,
i had an ultrasound on my heart 2yrs ago, and hard bubble study done, it showed my heart was fine, i also wore a heart moniter for 48hrs, it showed an acute sinus rythum, not unusual, its just gotten worse over the last few months,
im more worried about my BP, and why is it up all the time

i hope that answers your questions,  sorry it was drawn out, but at times i feel that is the only place where i get listened to,
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1306714_tn?1327260680
I know what you are going through.  Before my surgery my BP was very hight and my heart rate races so fast that I could feel it in my head.  This would wake me up during the night because my heart felt like it was coming out of my chest.  I was really worried about it.  I also had the feeling of my head exploding, and it also felt like some one had a knive in the base of my neck and just twisting it, and I was working at the time, but finished my school year out with the grace of God.  I also had the tingling in finger's also.  I had my surgery on the 6th of June and all these agony's have gone away. I have had a set back from surgery. 6 week's after surgery they found a CSF leak so I have to go back in to surgery on Mon 10 to have it repaired, but I know when this is done I will feel so much better.  I am looking forward to getting back to a little of a normal life.  I feel your flustration, and I pray that you will get your answer's that you need to get this all taken care of.  
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