Chiari Malformation Community
This Chiari is Scaring Me
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This Chiari is Scaring Me

I couldn't sleep last night because I was on line searching more information on Chiari...and there were families that said they have lost a love one due to CM....I mean, how did these Chiarians die...I want to get more testing done since Chiari can bring on other conditions...I was already DX with Fibromyalgia....What other docs should I see to get other testing done?
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620923_tn?1393294254

  Hi...yes, there have been deaths related to Chiari....I do have a few links in my profile if u want to read them...some were misdx'd or not treated properly....this is y we say get to a true Chiari specialist as the dr is key in the care u receive.

Many that passed other then the Chiari being progressed and it took so long to be treated, passed from heart failure ....and they have many other issues related to Chiari affected their overall health.


Ur fibro dx is most likely a misdx for EDS....so do check into EDS as it is more likely then fibro, I too was dx'd with fibro and once I got to a chiari specialist found it was not, and EDS was the cause....

I am working on a list of testing that we all need to have done...but u need to rule out sleep apnea, syringomyelia, tethered cord, lymes, lupus, MS, disk issues, ICP, POTS, thyroid and vitamin levels should be checked, ehlers-danlos.

  U need a brain MRI w/wo contrast, a cervical thoracic, and lumbar MRI, a CINE MRI, clinical eval for EDS....and depending on the findings u may be sent for other testing.

  But u want a true Chiari specialist.
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Selma that is what my mission is..is to find a true specialist...well I get an MRI in the morning, then I will go from there...but is it GP doc that does the testing for EDS?..or is there a different specialist I need for that...this is really worrying me...because I am in constant pain....and not sure what is causing it.


Do you think I should see a pain specilist?...I have pain in the joints, in my knees, ankles, elbows....lower back is so bad I have to walk with a cane most of the time....my journey have been so hard because even neurologist don't even understand...But I'm trying to keep the faith as we all are. I love the the support from my Chiari family.
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620923_tn?1393294254

  My Chiari specialist did that for me...in fact  they had a NL there that did it....but a rheumatoid Dr should be able to help, but I am finding not all are aware of it and do not know how to dx it to the point of sending u to a geneticist for typing.....

I also walk with a cane and have for yrs ...yrs b4 I got my chiari and EDS dx....

I know it is a sloe process to finding the right Drs, it was a yr after my Chiari dx until I got to mine and a little longer until I had surgery.....hang in there...as long as u keep pushing forward u will get there : )

I found heat helps with my pain, cold makes me hurt more, as I also have reynauds  phenomenon....be careful with lifting , bending....so many times I  would bend down, but my joints lock and then I could not get back up....I have to fall over and crawl back up....sigh....

I have not found what to take for this pain.....when I do I will let u know.
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2120085_tn?1344769510
Huh if death is so rare with this.. Why does your list seem so huge.. Basically if i don't get surgery and when it progresses.. Ill drop dead then?
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Avatar_f_tn
As my cardiologist put it, "it's like a slow hanging".  
So, no, not likely to drop dead; more like a long miserable decline.  (Sorry)

A friend's joke is, with Chiari the good news is that you're not going to die; the bad news is, you're not going to die.

In my case, my digestive system was shutting down, so eventually I'd be looking at a feeding tube (& worse).
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Avatar_f_tn
I actually came across that list on Selma's profile the other night and am scared now, too. I could just be making mountains out of molehills, but I've always told people that one of the reasons it's so difficult for me to just ignore my symptoms and go on with my life is that, when they get really bad, it literally feels as though I'm dying, and I just can't cope with that level of fear and uncertainty. After so many years of worrying I would just randomly die, however, I was able to somewhat convince myself that obviously it wasn't going to happen if it hadn't happened yet...but now seeing that list just freaked me out again.

It does sound as though the deaths are rare for what that's worth, though.
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2120085_tn?1344769510
Haha free... I think that also... " it would have happened by now " ...
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620923_tn?1393294254

  The thing is read the links to some of them....it is not just Chiari alone that is the result or main cause of death.....I know if u read on the web it says it can not cause death...but that is not true, but with the right treatment and the right Drs we should be fine,

With Garrion, they had no idea to check for sleep apnea, and as a child it was more of an issue for him post op....this is y we do mention it, his mom is a member here and has made it her mission to inform us in his memory about sleep apnea and it's relationship to chiari....

This is y I stress testing for ALL related conditions bcuz just one underlying issue not dx'd b4 surgery can affect how u feel and HEAL post op.....

Read about the singer that was dismissed as post natal HA's the Drs did not  listen to her...considered it related to her having a baby....they did noting until it was too late, and she suffered a heart attack and died with 2 small babies at home....

Clinton was a young man in the military, his mom also a member here to raise awareness and to find out more about Chiari...he had surgery by Drs that did not monitor him post op....and he stopped breathing....

  Finding the right Dr that is well experienced is key I can not say this enuff.
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