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Chiari related deaths/or surgery deaths?
I just wondered something (again can't really read through all posts to see if someone else asked...bad concentration).
I wondered if with Chiari itself, or after surgery when people's chiari gets worse and with a 2nd or other surgeries, if anyone has heard of anyone dying from any of that? If so what was it? I mean was it due to a heart attack (cardiac arrest), blood clots, sleep apnea, difficulty breathing, etc...? I mean with type 1 can it still be very dangerous to deal with? I was just wondering if the symptoms themselves can cause a person to pass away or if people have passed away during surgery for what reasons.
Sorry if this sounds scarey but I just need the truth as to just how serious this needs to be taken (as far as consideration for the 2nd surgery and weighing the risks versus it helping. Hope that made sense. I just know here and there I read some different sites (groups) that someone here and there has passed away either had surgery or during or after or before. Frankly, I want to feel much better and have a good bit of my life back, but the more I think about it the more scared I get.
I wondered if with Chiari itself, or after surgery when people's chiari gets worse and with a 2nd or other surgeries, if anyone has heard of anyone dying from any of that? If so what was it? I mean was it due to a heart attack (cardiac arrest), blood clots, sleep apnea, difficulty breathing, etc...? I mean with type 1 can it still be very dangerous to deal with? I was just wondering if the symptoms themselves can cause a person to pass away or if people have passed away during surgery for what reasons.
Sorry if this sounds scarey but I just need the truth as to just how serious this needs to be taken (as far as consideration for the 2nd surgery and weighing the risks versus it helping. Hope that made sense. I just know here and there I read some different sites (groups) that someone here and there has passed away either had surgery or during or after or before. Frankly, I want to feel much better and have a good bit of my life back, but the more I think about it the more scared I get.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Not sure what you are trying to say....My "PCP" Say I have #1 & I Have Mylo& Hydro and Chiari.....
What do you mean #1?
Do you also have brain stem descent?
I Have Read People With Chiari II Have Mylomeningocele & Hydrocephalus BUT My "PCP" Say I Have #1 & I Have Mylo & Hydro & Chiari ..... Ive Known Me For 54 Yrs & PCPs R Only Ur Dr For 3 yrs In Training So Ive Read ... Wouldnt I Know I Have Chiari II Just By Knowing I Have Mylo & Hydro ?
COMMUNITY LEADER
I can only imagine what you are going thru....I lost a few friends myself and know how deep this can hurt...
What is worse is the Dr saying she would be alive if she had not had surgery, ,there are so many variables....
Do you know if her surgeon was a true Chiari specialist?
Thank you this just happened on the 7th of April I am mad as hell. So many unanswered questions.
COMMUNITY LEADER
My deepest Sympathies on the loss of your sister....many times it can be an under lying condition that can add to mortality post op.
And if the Dr that performed surgery made that statement I would wonder why surgery was done....that does not make sense.
It is just as possible had she not had surgery she may have passed as well....this is not something you should dwell on....and pray she is resting in peace.
Hi my sister just passed away after having the Chiara decompression surgery. The doctor could not explain what happened. She died a day later. It don't make any sense to me and my family. I asked if she didn't have the surgery would she be alive the doctor said yes.
COMMUNITY LEADER
I wish I could help u with ur fears...and I know that is something u will have to face ur self...but know u r not alone...and I pray ur pain subsides a bit so u can relax.
"selma"
Thanks so much. I wasn't as worried with my first one and I wasn't at first after seeing the neuro this time either, but then the further we got down the road to home, the more I started to worry. Scared scared scared. I have been worrying about a lot of stuff lately though, so this is just on my list of worrieds/fears/anxieties. Plus I have always had a fear of dying and that is something that no counselor/psycologist or psychiatrist have ever been able to help me with. I have been thru a lot of counseling and it never helps one bit...but everyone is different.
I am in so much pain today that it is hard to move. I really wish they would change my pain meds, but they won't (my primary dr is the one who is doing the pain management bc our pain mang facility I will never go back to bc of them making me take a med that made me break out in rashes and throught felt like it was closing but they wanted me to keep taking). Anyway, that is something else. I guess I need to talk to the surgeon again and see what he says. I need to talk to people who have gone through a second decompression surgery and see what they say they went through or side effects and so forth. I will ask that question in another post...see if they had any worries, etc..what their 2nd one consisted of and if it was complicated etc...
Thanks again for sharing the information.
I am in so much pain today that it is hard to move. I really wish they would change my pain meds, but they won't (my primary dr is the one who is doing the pain management bc our pain mang facility I will never go back to bc of them making me take a med that made me break out in rashes and throught felt like it was closing but they wanted me to keep taking). Anyway, that is something else. I guess I need to talk to the surgeon again and see what he says. I need to talk to people who have gone through a second decompression surgery and see what they say they went through or side effects and so forth. I will ask that question in another post...see if they had any worries, etc..what their 2nd one consisted of and if it was complicated etc...
Thanks again for sharing the information.
Yes people have Died due to complications of Chiari Malformation, as we all need to appreciate a persons medical history is treated with utmost confidentiality by the medical profession. Details of how and why a person dies being made public is for the family to decide.
There are risks involved with any surgery however the vast majority that are done every day are safe including decompression surgery. People should discuss their fears and concerns with their surgeon before surgery.
MRI gives a good picture of the brain and doctors can see if there is a problem that needs to be dealt with urgently, things like CSF obstruction and compressed blood vessels or nerves
etc.
It is also important to understand that Chiari surgery is NOT a cure but its goal is to improve quality of life. CM is not a condition that most Dr's see everyday, this is why it is important to find a Dr who specialises in Chiari, a Dr who treats Chiari every day.
There are risks involved with any surgery however the vast majority that are done every day are safe including decompression surgery. People should discuss their fears and concerns with their surgeon before surgery.
MRI gives a good picture of the brain and doctors can see if there is a problem that needs to be dealt with urgently, things like CSF obstruction and compressed blood vessels or nerves
etc.
It is also important to understand that Chiari surgery is NOT a cure but its goal is to improve quality of life. CM is not a condition that most Dr's see everyday, this is why it is important to find a Dr who specialises in Chiari, a Dr who treats Chiari every day.
p.s. as far as what I have read about people passing away, no one mentioned what it was that caused the people to pass away during or after surgery, etc.. I just read that the people who was a Chiarian was either in their surgery or after their chiari surgery (not sure how long after - could be months for all I know). I wasn't sure if it was related to the Chiari and complications. Again, I hope this all makes sense. Feeling really bad today and can't concentrate well at all.
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Hi...I know a few of the deaths did report the reasons...they were listed as chiari related....the one in Philly was due to an infection not being treated properly.
Another one was mis-dx'd and when she finally did have surgery suffered a heart attack.
A young 9 yr old boy died due to sleep apnea which his mother is on a crusade to inform all chiarians to be tested for this related condition...again Drs did not check for this and this young boy died as a result.
Many times it can be not having a well informed Dr, and many times it can be just how ur body responds to surgery and the trauma of the surgery...or the meds....
The is a major surgery...and there r risks.
And surgery should not be looked to for a cure , but a last resort only to restore flow and slow progression ( reduce the formation of a syrinx).
We have to remember we r all different, and can not expect to have the same experience as someone else.
If u r interested I can give u more info....but, again as Ray has mentioned it is at the discretion of the family as to what is given out as to the facts of a death....Garion's death was disclosed on Dr G medical examiner......Clint Botha's death was covered by NZ's news as well as his mother was out trying to get awareness out there as well....Kelly Morrill's husband is willing to share info on her as well as she was an advocate for chiari as well.
"selma"