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Chiari Malformation Community
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992677 tn?1537672503

Curious, What is the most common cause of death?

With CM? Is it the surgery? Or is it related symptoms caused by the compression of the Brain Stem? We keep hearing of so many lost due to complications of this condition but often the actual COD isn't stated.

CW
17 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi CW...well in each it seems to be diff...but a direct result of having chiari....in the case of a little 9yr old boy it was due to undx'd sleep apnea......
One woman was left untreated so long she suffered a heart attack shorty after surgery...too much for her system I guess, but she was mis'dx'd for a long time.
Some it  has been due to the NS not being able to recognize some of the post op issues that crop up.....I know one developed meningitis and went back to the Hospital several times and was sent home each time , with the dx that she was suffering from post op pain...and nothing more.

My opinion is that some have more than just chiari going on...like Ehlers-danlos, sleep apnea and these r not being addressed...I could be way off base, but I do feel it is part of it....the next part is that some drs take on the surgery but do not have the experience for when the surprises crop up....

I would not say none has to do with compression of the brain stem, it could very well be....as that is our control center, and could explain the sleep apnea, TIA's etc.....

What is scary is we r told that chiari is not life threatening, but we keep losing more and more to it or related issues.

  "selma"
992677 tn?1537672503
>>some have more than just chiari going on...

I agree totally. Very frankly, I feel as though even those specilizing in Chiari don't totally understand. My wife who has no medical degree was overheard exclaiming to a friend the other day "it effect the CNS." She told that person how the brain stem was actually compressed and deflected in my case. IN her reasoning she asked the person what would your body be if you took out your central nervous system.

Kind of agree's with what one of my former NS's assistants told us in the office. She pointed out different things on my MRI. She said in her opinion all of these things where a direct cause of the CM.

As for Chiari not being life threating. I say some research needs to be done. REAL research with real chiari patients. Perhaps even some comparison studies comparing Chiarians from around the world and seeing what symptoms and or health problems are in common. But no it's easier to just say it's incidental and move on the the health issues that are harder to get sued over. Hate to synical but in my mind that is the key. Too many are more afraid of the almighty dollar bill than they are inclined to really 'help' the patient. Kind of a no skin off my back approach... Fortunately we do have those few who really do care, but they can only do so much with something they don't really understand.

Ok, my rocking horse is broken now so I'll shat up! :-)

CW
2 Comments
My doctor told me if I didn't get the decompression surgery I would experience sudden death.  I had the surgery within two weeks.
Not cool but interesting... I haven't read the forum in quite some time so perhaps I've missed it. But I felt like my case was different in that regard. Largely due to what happened when I had that surgery. The NS was just standing in the room the day after surgery. He didn't say much at first he was just looking at me like a stalker or something. Finally I asked him what is wrong. He said he was amazed at how well I was doing as I should have been dead. He apologized to me for not seeing how bad the blockage was but he said the tests didn't show how bad it was in reality. When he cut my dura he said it literally sprayed the room with csf. He said it should or could have crushed my brain. That was when I originally posted this question several years ago. The same thing happened again in 2012, with the exception of the apology. But we know now that this wasn't due to the CM issues. Perhaps related maybe?? But I also have an Arachnoid Cyst that keeps closing itself off and blocking csf at the same area of the skull. Between that and the psudo it was blocked up pretty good the second time.
1500699 tn?1363397198
Good question.  I was told by two different neurosurgeons that Chiari is not life threatening.  I would not die from it like I would cancer.  I agree that a lot more needs to be researched and documented.  Unfortunately for most doctors it is easier to ignore you or pass you off to another doctor.
992677 tn?1537672503
My PCP tried to have my DL taken away when I was dx. No real explination, though I can see the reasons why. I ended up keeping it, along with a medical card that has to be with my DL if I'm ever pulled over.

Doesn't matter a whole lot as most days I don't feel safe to drive anyway. But that was part of what I was wondering when posting this question. I was also wondering about Heart Attack, Stroke and or Respritory problems.

CW
1687929 tn?1319429611
I know the doctors say we won't die but when u feel pains every day that make tou feel like you are going to die any second how can you not question the thought of this disease not all of a sudden killing you.
992677 tn?1537672503
IMHO- uneducated at that when it comes to medical things. My only education as far as medical things is life itself. Frankly I think that gives many of the long time Chiarians here a PHd, MD or something like that.

But the reason I started this post was to look for similarities. My former NS, who did the decompression, stated to us post op that I could have easily been dead due to the BS compression. He commented on how Chiari messes with the central nervous system during periods or times of compression. Thus this thread as I've wondered since then if Chiari may not be the cause but perhaps is what is leading to many other problems that can be life threating. For instance when my symptoms where really going nuts, now is bad enough, but pre-op during a relatively short period of weeks they ran EKGs on me 3 times twice telling my wife that it was an apparant heart attack. Another time they rushed me to larger hospital stating in my records that I was suffing a stroke. Neither of these proved true even though the symptoms of such where all present.

All this and some other things have my hypothesising that perhaps even though Chiari may not directly cause the death that perhaps it triggers the symptoms or problems that are life threating. Again, not saying that is correct or incorrect it's just a conclusion that I've come to and was looking here for unguided personal knowledge that might prove or disprove.

Doesn't really matter, Chiari is like a two year old child. It does what it wants and the more we try to stop it the more it fights back! :-) That was a joke by the way. For me the best therapy is to focus, maintain my focus on something positive whereever and whenever possible.

CW
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