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.
>>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! :-)
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.
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.
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.
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.
I've heard of several deaths recently of Chiarians, and they were due to decompression surgeries on people that were NOT their primary decompression surgeries. As in, they'd had the operation before and the surgeons had done a poor job. So personally, as far as mortality is concerned, I think the biggest thing we can do to mitigate our risk is to find a neurosurgeon who *specializes* in chiari. Not one who just "does decompression surgeries" - but someone who has actually devoted their surgical experience and practice in part to Chiarians. Decompression is not like getting a hip replacement, for example. Everybody's decompression is different depending on their individual anatomy. The surgeons have to play jazz a little based on the specific needs of the patient they are operating on. This is why it is SO KEY to have someone with a lot of experience in decompression under their belt. If problems arise in the O.R, you need a neurosurgeon who is extremely familiar with how to proceed. If a surgery is done poorly, it can absolutely lead to death and serious complications.
So that's JMO based on observations. The less brain surgery you can have, the better. Otherwise you are at risk for not only the typical risks of surgery like infection and death, but also scar tissue, brain slump from taking out too much bone, all kinds of things. So make darn sure you get a great neurosurgeon specializing in chiari the FIRST TIME you have surgery.
CW- I really feel it could be that the NS's doing many of the surgeries r not experienced enuff on how chiari affects us and too many r doing surgery bcuz the patient is complaining of HA's...to me that is not enuff reason to have such an invasive surgery.
When u look at those lost to chiari related issues, be it surgery or sleep apnea, it is an uneducated Dr that did not go all the way testing and searching for all this condition could affect and try to prevent....I feel that is their job, and is what I expect of my Dr....mayb I expect too much.,..not sure....but, it seems in too many of the cases if the Dr would have listened to the patient and ran a few more tests, we may not have lost as many as we had.....JMHO.
The balance however, it is just not knowing how one's body will respond to the trauma of the surgery or all the meds etc....
All good points...
But as far as expecting too much. Well while we know Dr's are mortal and make mistakes just like the rest of us. I too may expect a more professional approach. I wouldn't ask the local barber who cuts old men's hair all day long to cut and style my wife's hair. And that is the reason finding the right Dr can be such a pain, they all seem to want to tell you the normal "Oh yes, we do this all the time..." line.
I know...just like u do not take a foreign car to just ne mechanic when u need the transmission rebuilt.....u need a specialist there too, regardless if they do it too...lol...
I was thinking that suicide could be a common cause of death. I'm just saying this because it is so hard for a lot of us to get dx. Many of us suffer so long before anyone will take us seriously. I can't imagine how many of us give up before we can get some relief.
I will second the sleep apnea cause of death. I had that many years before I got dx with it a year ago. I was only 27 at the time and I was not overweight or anything like that. The sleep doctor that I saw was so rude. My girlfriend went with me to see him and she was not happy about it. He suggested that I needed a UA. I then demanded to take one and they would not give me one. I was so upset.
This medical journey has been so hard because no one believes me, or worse down plays my symptoms. I have to fight for every inch of ground. Its so hard to get the proper treatment when people tell you that you are just depressed. If it was only that easy, I would take that in a heart beat. I have been depressed and suicide has crossed my mind but I know that I could never leave my family.
I am glad suicide is not an option for u and only one in more than 3 doz was a suicide.....so that is not a cause to look at .......
I think we r a tougher breed, and we r so, bcuz we need to be....
Once u find the right Dr for u, u will see things get better.....in all aspects.
I also had been diagnosed with Mitro Valve Prolapse and then years later they said I didn't have it. Then another time they did an EKG and said I was having a heart attack and sent me STAT to ER and they said I was fine. So heart I believe could be effected by Chiari. More research definitely is what we need!
Hi and welcome to the Chiari forum,
Mitral Valve Prolapse is something associated with Ehlers-Danlos which is a related condition to Chiari...have you had this condition ruled out?
With Chiari ALL aspects of our being can be affected as this affects our spinal cord and brain stem.
Some of the members you replied to in your comments are not currently active members....to chat with them you could send them a PM (private message) which generates an e-mail so they know someone wants to talk.....or post to a current post with members that will reply.....
I know we feel like we are bumped from one Dr to another and they can not agree what is causing what....it is frustrating and difficult at times to deal with....so I hope you continue to share your journey with us here.You are not alone <3
My neurosurgeon told me I had 4-6 months when I was diagnosed. He told me after the decompression surgery that I would not die from the malformation itself because it was repaired, but I would eventually die from the various complications of the malformation. His opinion was the central sleep apnea would be the culprit.