I’m just curious how many people actively use this site. It seems a lot of the posts I’ve come across are quite old. Is there a “ roll-call” or something similar that lists active members and their bios? Just curious 
I am getting the same impression. I am hoping that people are more active on it than it looks though bc it would’ve super helpful for us!
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I’m counting about 30 people active within the last 10 days, although some of them may not be super chatty. But in other words, this is a reasonably active site.
Sharon
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I have found that it works well to contact folks who have posted previously about information or experiences that are of interest to you. Find out where they are at in their journey! Please keep in mind that Chiari is not a high numbers condition and people do move on from the site. Give and get might not be equal as people with Chiari are not always at a generous stage of their life.
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I try to come on here once a day, look for new post. Look through old post. Feels comforting to me, to know I’m not alone.
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Hey, angelface! (“Hey” is “hello” in Southern…) I know that personally, I go to this site several times a week, but don’t respond unless someone has issues with the same kind of Chiari symptom I am dealing with. That’s the thing with Chiari’s - or I suppose with any Central Nervous System damage - the symptoms can be SO varied. Folks on this site have mentioned symptoms I was never aware of. Even so, my symptoms were so many and so varied (from cardiac to gastro-gut…on and on) that I was misdiagnosed for 10 years. Doctors looked everywhere but the CNS. It is wonderful to be able to glean some advice - and/or encouragement - from folks who have similar symptoms.
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Hey Beth! (Completely spoken in my southern accent lol)
Thank you for your response. I am also finding that there are so many variations in symptoms that it is often mind boggling to me. My daughter’s symptoms alone often confuse me and if I was not living through this with her daily, I may find it difficult to believe. Thank you for sharing. May God bless you and give you comfort 
Thank you for accepting me into your PRIVATE GROUP. It is really hard sharing my problems that I have concerning my dx.of CHAIRI and syringomylia.
When I was 1st diagnosed in 2008 all my family members were really understanding and curious to find out about my disorder. But seems like now they have a tendency to disregard my symptoms, with no empathy at all.
My husband is most notably my worse supporter.
He often threatens me with DIVORCE.
He keeps me upset and so nervous at times that I feel so trapped with the anxiety.
I’m at a place in my life where I feel totally lost But too tired to do anything.
I just need someone to understand what my life is feeling like.
I feel sooooo rushed in my life trying to do the things I want to do BEFORE this disorder leaves me unable to go places and do things… I feel like I’m running out of life!
Does anyone understand this?
Thank you so much for letting me vent.
Alma
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Hey Alma,
Welcome to Ben’s Friends.
You vent as much as you need.
I’m sorry to say it like this but your situation is NOT unusual. I often explain it like this:
“When you break your leg it’s fairly obvious. You have your leg in a cast. You may have a limp. You get around on crutches and people can see you have a broken leg. 8weeks later it’s all healed and things return to normal. This is not the case with an invisible illness.” Unfortunately some people don’t understand this. The theory is
get sick=>rest and recuperate=>get well
When that doesn’t happen acceptance from others can be REALLY difficult.
With Chiari or almost any neurological condition this can be multiplied 10 fold. Not only can it be invisible, but symptoms can vary massively from one day to the next. The brain controls everything and even a slight change can cause HUGE effects.
For me, I have a benign brain tumour, it’s benign but gives me no end of symptoms. For example, this morning I felt fairly good, so I thought I might get some stuff done. I made a start, needed to go and get some parts to continue. Drove into town and started to feel ‘it’. Got the parts I needed and headed home. Luckily, I got home but that was the end of my day. My headache was BANGING away, externally I looked fine, but OHH BOY was I feeling it. The issue is I can never tell when, where or how it’s all going to affect me.
I have tried to explain just how bad it can get to others before, but they just don’t get it and they look at me like I’m from another planet or say things like “Ohh it can’t be THAT bad…” And at times it’s not ‘THAT bad’… …it’s worse!!! People who have not been in this position often have no idea of the realities of it all. They never will, trying to educate them can often be a waste of time and energy, which only leads to more frustration.
Relationships can be challenging and as rude as this may sound, it is not my intent, but you need to look after you at this time. Have you seen a neurologist? Or a neurosurgeon? Maybe your husband needs to attend an appointment with you to hear first hand from the dr’s what the realities can be. Some people find all this difficult to accept (As if it’s a simple walk in the park for us HUH?) and may need to hear it directly from a higher source, a Dr or surgeon.
My advice, slow down. Take some time for you.
You state you were diagnosed in 2008,
Diagnosed by who? A PCP Dr? or a radiologist? or a neurologist?
Have you had any follow up since '08?
What are your symptoms? Make a list. It can help when you see Dr’s to have a list.
Have your symptoms increased or sensation changed?
There has been some advancements since '08, some treatments have changed and there maybe other options available now. Again, I would recommend you seeing a neurologist at the very least. You could find that that idea of “I feel like I’m running out of life!” could be halted or slowed down at the very least.
Merl from the Modsupport Team
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I was wondering the same thing. I have been feeling alone & down so my counselor sent me the link to this site & as I’m reading posts I seen the dates are old. I have posted on a few & have gotten replies. I was hoping it was more active because I’m struggling & could use the support at this time.