I've been reading Conquer Chiari (thanks for the rec Abby!) as well as reading on here, talking to other people, etc. and now I'm very confused. Is this a serious problem? I have always thought it is but now I'm confused. I know that sounds like a silly question, but some doctors treat it like it's nothing yet some of the things I've read are terrifying. Words like spontaneous paralysis, death, chronic, nerve damage, debilitating, etc come up in the literature - and I definitely agree, cause my symptoms are debilitating most days - but other people tend to blow it off. I'm just wondering if I'm overreacting by thinking my Chiari/Syringo diagnosis is life altering and bad? My parents and I are really upset/worried but doctors don't seem to agree... I'm giving my friends the bare amount of information but am I needlessly worrying them? Am I needlessly worried? What kind of priority am I to a neurosurgeon?
Ugh, this is just all very overwhelming, I'm sorry if this question seems stupid. Doctors are just spinning my head around and I just want some answers from people who understand. Wishing healthy days for everyone.
Okay, I just reread this and I figured I should clarify where all these issues are coming from:
1. Why is it that I lost my travel insurance/can't leave Canada (I live 1/2 hour from the USA border, I'm always travelling to Minnesota) because I'm 'unstable' but I have to wait 6 months for an MRI?
2. Why is it that the weight loss surgery program has temporarily discharged me, thus halting my prep for surgery and losing my place in line, because the brain issue is 'screaming for attention' and must be dealt with before they can proceed? But... I have to wait many months to a year to see an NS? (I only get to proceed with weight loss surgery after a neurosurgeon clears me to go back and declares the chiari/syringo under control - so in a few years, basically. :( )
SO sorry you are having those problems. I am getting the same mixed advise from this, somedays I dont know whether to take this seriously or not. Sorry I cant answer your questions :(
Everyone is different with Chiari. Some people go through their whole lives with very few symptoms to others it is devistating and everything in between. It depends on your symptoms. It can get worse with age and trama like a car accident or head injury. The surgery is a treatment for most people not a cure. Kids usually do better because it's caught early. Too many doctors dismiss us because they don't understand the Chiari because it's an orphan disease and it's only been able to be diagnosed with the advent of the MRI. You need to find a Neurosurgeon that treats Chiari patients. Most Neurologists are dismissive of Chiari patients. Having a syrinx definitely makes the situation more complicated. It puts pressure on your spinal cord and can cause alot of complications. I hope that answers some of your questions.
I am afraid this is what my family has been going thru as well. I find it impossible to teach, which I used to love doing, keep to a schedule, not to mention the pain.
My only advice is to talk to you parents or support system, I am very lucky because my Mom and a close friend can see the difference in me. I take one of them to every doctors appointment. At first because I really had not clue what was going on but it helps to have the extra set of ears and sometimes it is harder to firght for ourselves then for others.
Kids are not normally screened because it takes an injury in later age for it to kick in, usually form a drama.
If you have any questions or comments please feel free to contact me.
Niose
I am from Toronto and was able to get an MRI DONE within a month after seeing my family doctor. But my only problem is finding a neurologist in Toronto or southern Ontario for that matter is getting harder to find. The one I went to see earlier this year has stop seeing patients and went into some kind of research. My family doctor says it’ll take until next may or June before I can see another unless I can find one on my own.
Mixed information from everyone! I am finding my best advocate is me. And as my memory and mind are now beginning to go I am very lucky to have my mom come along to almost all of my appointments. That way she can ask those conflicting questions (that most times there still is no answer to)
I have started to try to write almost everything down, even things unrelated to chiari. I’m 30 and my mind is lost. It’s easy for a doctor to make you feel crazy when you have already felt like you’ve lost you’re mind.
You got it right when you said that you bring your mother to appointments because it’s good to have to sets of eyes and ears when it comes to these things. And like you said write everything down because some things are related some aren’t. You will find as you do your own research and listen to your own body you will see what’s right for you. Best wishes!
Hi everyone!!! Thank you so much for your kind and thoughtful replies. I’ve been getting emails about this topic coming back to light so I had to reset my password and find my way back on here! To any newbies - I wrote this message way back in 2012 and Chiari is a serious condition. I have found that some doctors immediately think that way and some are undereducated, but never let anyone tell you any differently. I looked at the date of that I originally wrote the first message of this thread - it was like, just days/weeks after that I saw my neurosurgeon for the first time and he told me I needed surgery (I unfortunately had to lose weight to have surgery). Either way, the NS validated that it was serious.
Also, if I can offer one last piece of advice - if you show ANY signs whatsoever, get tested for EDS before you get decompressed so they can adjust surgery accordingly.
I’m Seenie from Moderator Support here at Ben’s Friends and I came across this thread when I was looking for information for a new member in Southern Ontario.
How are you doing now? Would you mind coming back to your thread and letting us know? The new member, @tkbs_511 , has a teenage daughter and she is looking for some input from others.
