chest pain

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chest pain

Postby jjames » Wed May 30, 2007 11:12 am

Does anyone have such severe back pain that it radiates to the front, or is chest pain a symptom of ACM/SM?
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Postby sylvester » Thu May 31, 2007 9:21 pm

I sometimes have pain that starts mid-back and radiates either around or through (I'm not sure which) to the chest, mid-sternum. I often have the chest pain alone without the back pain preceeding it. I've heard some other people complain of chest pain with SM, but I've never gotten a straight answer from my docs. My former PCP (who I fired) told me the last time I complained of chest pain, "we checked your heart 4 years ago, there's nothing wrong." My NS says he doesn't think it would be related, but ... ??
So that's what I know. I'm sorry its not much help.
Anne

sm T6-T12
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Postby petsmom » Thu May 31, 2007 10:28 pm

I have a syrinx from T5-T9 and have had a broad range of chest/diaphragm pains and weird situations that were pretty scarey. Others with SM, especially midspine, have mentioned the "is it my heart" sensations that can really be scarey. Like who wants to chance it and not go to ER, call 911 or something???

Yep, I see your syrinx is right there with the nerves that go to anything and everything in the mid body. I finally had a crazy spell, thought I was fixing to meet my Maker, called 911 and got admitted. They put me in cardiac care to make sure if was my heart. The ER doc did know about SM and that it could be causing the symptoms but wanted to rule out my heart. They did all the testing and heart is fine. I knew had heart murmur. My BP had done a nose dive that day, like way down. My body had turned to rubber. I swear I saw the white lights.

Am glad I got my heart checked out and now I know the weird sensations are not my heart and not upper GI either. That just leaves the syrinx-----

A lot of diagnosing is ruling out what is NOT the cause. Thinking I had MS all those years I advocated and demanded the tests I felt needed to rule out the cause. Basically I had eliminated all causes but neurological for my many weird symptoms and pains.

So, not a bad idea to have heart checked out just to make sure. Upper GI problems is another popular diagnosis for us. Mine was all fine. But takes a load off one's mind to know for sure and prove a point to the doctor.
All that was back Spring '05 and never been that bad since. I was in a very stressful situation at that time. We are warned to watch our stress overload as it can flare things up bad.

Dawn
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
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Postby svennobalance » Fri Jun 01, 2007 8:30 am

My syrinx caused a lot of thoracic damage and I get extreme tightness in the chest - front to back which causes muscle spasming by the end of the day. Cymbalta and Gabapentin are helping some.

My doc said the pain was most likely from the syrinx damage.
Gabriel
chiari, decompressed dec 05, syrinx, hydro, baclofen pump October 2007, rev jan '08, VP shunt April 2009
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Postby jjames » Fri Jun 01, 2007 9:33 pm

Thanks for the replies. My chest tends to hurt when I lay on my back (my back hurts too) or when I lay on my stomach, which I don't do very often because it hurts so badly. I am not really worried about it being my heart as it is usually associated with my back pain too.

jjames
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Chest Pains

Postby precious » Fri Jun 01, 2007 10:26 pm

I am new to this sight and to SM I had my first MRI in Feb and have since then gone from PCP/ to a spinal specialist to the Nuerosurgeon. Just had 4 more MRI's and 2 CT scans done and I am going in Monday for the follow up from these to see what they show. I find my self extremley frustrated and in alot of pain. None of the doctors that I have seen know anything about syrinx's and have all told me to do my own home work. I cant believe so many of them are clueless and i I thought , WOW I thought that is what we paid Dr's for were to help with our medical problems. Anyways on May 26th i was taken from work in an ambulance to the ER I was having chest pain and had no idea what was happening to me. They ruled out my heart, and since it was memorial weekend i was not able to get the upper GI done because there was no one to do it. So i am scheduled for my GI on tuesday. But now looking through the rest of your post's I wonder If it is from my syrinx. I am so happy to have found this sight and be able to read some of your posting's and know I am not alone and just crazy the way my Dr's have made me feel. I feel so alone in dealing with this and dont know what to do to find a Dr to help me. Atleast I see there are others that have had these same experiences. I am so releaved to find help.[/list]
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Postby sylvester » Sat Jun 02, 2007 9:54 am

Welcome to the board, precious. You'll find this a very helpful and caring community. Ask your questions, and someone will usually have an answer.

I've been to the ER at least 3-4 times with chest pain, and been thru all the cardiac work-up and ... nothing. All was before my diagnosis with SM two years ago. The first time was 1998. After all the tests they found a gall bladder full of stones, that was asymptomatic, but they took it out anyway to eliminate it as a cause of the pain. They never did find out what was causing the chest pain. My PCP decided it was "all in my head".

It takes a while sometimes to find a doctor who is knowledgeable about SM and Chiari, or is receptive to information you bring him/her. The best thing to do is get to an expert. If you'll post your location, someone here will be able to suggest a/some options. Most of us have had to travel to find good doctors.

Hang in. We're all on this train together.
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Postby kittb » Sat Jun 02, 2007 10:12 am

I, too, have been a victim of chest pains, so bad sometimes I thought 'it must be my heart!' But no, EKGs showed (in the ER) showed that my heart was fine. So was my BP. 'No idea' is what the doctors' said. That was before my syrinx was diagnosed two years ago. I haven't bothered going to the ER since, knowing what I now know about it. With a cyst of CSF, our bodies are prone to feeling pains where they shouldn't be. The human body works wonderfully when everything works. We are not so lucky anymore. I get odd pains in diverse regions of my body too, quite unexpectedly. I've ceased to tell my friends when I'm in pain, because even if they knew, they can't do anything.
kittb
If you ever lose yourself, call on me and we'll be lost together-Kitt
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Postby petsmom » Sun Jun 03, 2007 9:26 pm

This is what is so great about having this resource for us needing answers and support.

The scary part is not knowing what symptoms are "normal" and just part of the deal, not really dangerous or life threatening. But scary as heck the first time one of these "episodes" hits you. Most of us here without benefit of a learned doctor. If we go to ER will they know anything about SM and how to help us???

Precious, you will find a lot of valuable info here. And yes, you do need to educate yourself and be able to advocate for yourself. No, it isn't our job--we are not doctors. But that the state of modern medecine and insurance limits, etc. You have to know enough to be able to discern if your doctor is full of ---- or does know what he is talking about. His ignorance could harm you more than help!!

I am much less fearful now that I have learned as much as can. Knowing that others have had some of the same crazy symptoms I have. Knowing how to keep myself safer.

We all need to give thanks for modern technology and computers. Can you imagine going through all this without ability to reach out and share and learn??? Now that was a scarey thought!

And you have ammunition for those doubting doctors. Like I told mine that I was among at least a dozen others with thoracic SM that have trouble with my legs. He didn't try to argue.

Dawn
I am not my disorder. It does not define me as a Person.
DDD, SM thoracic
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Postby Sandy » Sun Jun 03, 2007 9:37 pm

YEs, I have it. I have a thoracic syrinx and assume that it is from that.

Not pleasant!

love,
sandy :D
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Postby prettyeyes » Mon Jun 04, 2007 1:18 am

Hi I get chest pain also I have cm have not been told i have a syrnix, i have it right now on the left side I also have had my heart checked and it's fine, i had a heart cath done last year, i still don't know what triggers mine. it comes and goes. lisa.
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Postby kiminfla » Wed Jun 06, 2007 3:50 pm

I have intermittent chest pain too -- I only have CM, my cardiologist keeps ordering more tests -- but that's ok with me. Definitely don't want to overlook anything that could truly be heart related. I hope this passes for you quickly. Be blessed, Kim
CM - PFD 9/7/06
Life is mostly froth and bubble. Two things stand like stone: Kindness in another's trouble, Courage in your own. -- Adam Lindsay Gordon
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ditto

Postby loren67 » Wed Jun 06, 2007 6:35 pm

my story is almost identical to pets mom. chest pain er, told my family where my will was etc... very scary. GI was negative, cardiac negative, MS negative. thoracic syrinx t5-t12.
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chest pain

Postby prism » Thu Jun 07, 2007 8:54 am

I have had a lot of confusion about chest pain too. Following my open heart surgery last year- I kept thinking it had to be my heart, felt like they basically ruined my life rather than making it better. :shock: It hurts to lay on any side basically- have to be drugged to sleep.
I get some really bad chest pains at various times and have been trying to learn about the various possibilities of why they occur. Tests done by my cardio indicate that my heart problems are at a minimum now, but he doesn't take into consideration my connective tissue problem and I haven't even seen him since the chiari and sm. questions have come up.
It seems to be a pretty complex puzzle. And yeah, the doctors do tend to tell you that it's nothing, implying that it's all in your head. :wink:
It is exasperating to deal with dt's who know nothing about these conditions. That's why I'm personally hoping I'll be able to make it to TCI- I've heard they're really good at putting the big picture together. They certainly have refreshing philosophies about wanting to give you as many answers as possible at once, compared to most docs who just want to shove you out the door and deal with one little detail at once. You're not alone!
:roll: prism
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