Chiari Online Support Group

Newbie - Charlee

Hi all,

Looking forward to learning how other people with Chiari are doing and what makes things easier or harder. I am especially interested in those who are older (I am near 65). Seems harder to figure out what new problem is from what aging part of the body! I have autoimmune disease as well and a cavernous hemangioma in my right temporal lobe so things get complicated for diagnosis.

I was just told I have chronic respiratory failure with hypercapnia. Lots of desaturations at sleep - lowest down to 62 and nearly 70/hour.

Been having shortness of breath for 5 years and no doctors have been able to figure out why. I finally did some research and saw maybe the Chiari is the culprit. I was told 15 years ago that since it was only 5mm it was not the cause of anything - so go on get. Never thought about it after that and just dealt with all the weird problems on my own - avoiding doctors in general. Now back to the diagnosis wastelands but hoping it will bear fruit this time around.

I am a strong and hardy person, live alone still - though close to my mate - but I am getting nervous (so far not anxious) about what my future looks like. And how much of one I have. I have to move soon and that is not a pleasant thought at this time of the world - even without chronic and serious health issues!

I notice my typing and proof reading skills are LOW - and I was a published writer! My hands are weak and dis-coordinated and my brain does not interpret my instructions as well or notice all the errors even when I proofread. So bear with me.

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Hey Charlee,
My name is Merl, I’m one of the members of the Moderator Support Team here on Ben’s Friends and (unfortunately) I have had a fair bit of personal experience with the neuro side of things.
“…it was not the cause of anything - so go on get.” Now, this is VERY common. You can go through the pages here and read of many people who’s actual herniation is less than the ‘median’ of a symptomatic tonsil and yet they report no end of symptoms. Our brains are not all ‘median’, we don’t all meet that ‘normal’ measure, but that does not mean we’re not symptomatic. I’m often saying ‘No 2 brains are wired EXACTLY the same, what may cause minimal effects in one person can have a massive impact on another…’

When we have other known/medically diagnosed conditions some medicos can be really quick in reverting back to the known condition rather than taking the time to investigate the issue. As we get older our bodies start to deteriorate and wear out, this can be another ‘easy answer’, ‘Ohh you’re 60+, those pains are normal’, when you know damn well something ain’t right. I say all of this because (although I’m not 60) I have been on that medical roundabout myself, with no answers and lots of finger pointing for a long time prior to getting a proper investigative diagnosis. I knew for years something just wasn’t right, but it took a major incident for that proper investigation was undertaken. I was furious. All those years, all those dr’s, if only I’d stood my ground all those years ago tsk.
A cavernous hemangioma, depending on it’s location and size could cause no end of symptoms. But you know your body better than anyone and if something is not right, it needs to be followed up. So ok if it’s not Chiari related, then what is it? Trying to obtain answers, clear answers in neurology can be REAL difficult, all of the specialists I’ve seen seem to have differing opinions/ideas/theories. So best of luck with it all.

Merl from the Modsupport Team

Thanks so much for your response. I have also read (and experienced) so many people who encountered a similar challenge of getting a dx for autoimmune conditions. Docs, as a rule, I think, do not like “complex cases”. Zebras tend to require a lot of time and thinking and research and often there is no good treatment just endless management of weird symptoms. Can seem like a lose lose I guess.

I also do not have the “right” attitude. I look at doctors as consultants that I have hired to help me interpret relevant science that I do not grasp as fully as they do. I want them to listen to me. I need them to accept our relationship as a partnership where they add their knowledge and experience to my own self-wisdom so I can make good decisions. This does not make the docs happy that want to be treated as a god or savior: “I AM a brain surgeon; you may kiss the ring.”

In the end, I felt more stressed thus worse dealing with this broken system than I did when I went in. So I back off and go about my own way. Which works great until something new comes along.

Like now. And now is the scariest of all times prior. So I will push hard, politely but firmly, to get what I think I need out of this. Not going to get the surgery no matter the findings. I just want clarity and a reasonable prognosis so I can plan my next phase of life as clearly as possible. Why is that so much to ask?

I found a Chiari neurosurgeon nearby that has excellent reviews as intelligent, understanding, and thoughtful - holy moly! Can it be?

Hey Charlee,
I’m in Australia and with our medical system we have GP’s (General Practitioners) which is the same as your PCP’s. Then we have physicians who investigate complex issues. Then we have specialists who (obviously) specialise in their chosen field. Some GP’s make referrals direct to specialists and this can work well for a known condition, but when we have symptoms outside of the known condition or are outside of the specialist particular realm things can often get overlooked. This is where a physician can assist. In very basic terms the physicians role is as an investigator. What is happening? Why is it happening? Which specialists does the patient need to see? Part of the physician’s role is to collate and interpret all of the relevant information and reports, then make an assessment from there.

Let’s face it, Dr’s are scientists and in science A+B=C or patient ( A ) with symptom (B) equals diagnosis ( C ). The problem here is that we don’t all fit the equation in exactly the same way, there are too many variables. Often dr’s are less accepting when A+B does not equal ‘C’. Our information is often taken more as hearsay or seen as anecdotal, like ‘Well, that can’t be happening…’ and yet we know damn well that it is.

When I finally obtained a true diagnosis this dr came out with the line ‘Ohh, look what we found…’, like it was all something new. I’d been telling them something was amiss, but until they could do a test or take a scan and see an issue they were less than will to accept my information.

Your line of “I AM a brain surgeon; you may kiss the ring.” is just SO TRUE. I am often saying “These dr’s are human, just like you and I. They are not gods, despite what their own egos are telling them…” Having found a Chiari neuro hopefully will assist you in getting the answers you seek, but please, do not be placing 100% of your faith in them. It can be really soul destroying when that faith is broken. If the answers you seek are less than forthcoming don’t lose hope, keep your options open and see if you can find an investigative physician.

Merl from the Moderator Support Team

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I learned along time ago not to place faith in anything or anybody but myself. Especially regarding my health and well being. I don’t think most doctors see themselves as scientists. Medicine is an "art not a “science” is what I grew up hearing.

I will be pushing my PCP to be active in this pursuit; if she can’t handle it, I will get one that will. Things have gone from seriously limiting to severely limiting with potential critical outcomes.

The hard part is being unwell and having to advocate for yourself. I don;t have anyone else capable. My energy levels are very low right now and I get muddleheaded. But, I pass everything by my mate and hopefully we can keep it straight and get things done. But we are also having to move before winter, so a lot going on.

Everyday I want to be able to say, if I die tonight, I want to have had grand pleasures and maximum enjoyment today. Today I had my brain MRI then spent the rest of the day enjoying the waning days of summer with my pack. Ended it watching an excellent basketball game - my team won in double overtime!

Charlee,
Welcome! I was at 5mm but had a lot of symptoms! So they did surgery. Craniectomy duraplasty, and C1 laminectomy.
Lots of symptoms, dizzy/falling down Confused/overwhelmed, my thought processes were really messed up. 7 mo post surgery…still issues but I can think again!
My brain still becomes overwhelmed (hoping this gets better with time) and I have to do my exercises but SO much better. Did I mention I am 56 yrs? For exercise I use a wobble board Lots of stretches and I walk with the dog! I nap ALOT so going for a sleep study next week to see if they can help me with that!
Hang in there, it’s tough to find someone to help sometimes. I messed around until I got an appt at Mayo. They weren’t very supportive, a bit systematic, I felt like a number. But, I got the surgery and it helped. The drs around where I live just wanted to diagnose me as psychological. Even my friends just thought I was crazy!!! Hang in there and keep trying, you will figure it out!!

Hi there and thanks for reaching out. We sound similar. I have the balance issues with falling down more and more. My cognitive skills are diminished greatly which is a real bummer. I have intermittent speech problems, memory loss, inability to recognize familiar faces, and have started having face spasms and drooling episodically. I learned to manage the headaches pretty well over the past few years, thankfully. It is the intense fatigue and dyspnea with severe sleep apnea that has me a bit scared honestly.

It was Mayo in Florida I saw the neurosurgeon. I agree, it was like moving through a cattle chute or factory line - going from one area to another with cursory, systematic and almost rude review along the way. I end up reporting the neurologist as he was totally obnoxious (you are just depressed) and tried to cancel my appointment even though I traveled a thousand miles and had to camp out because I could not afford a room.

Even there, the neurosurgeon (Dr GQ, I call him) said, ‘no you don’t have a cavernous hemangioma, if you did it would glow bright on the screen here.’ I asked, ‘did you look in my right temporal lobe?’ He moved his little fancy computer mouse around a bit and boom, a bright glow appeared on his magic screen. ‘Oh there it is’, he says! Pulease! And how much do these mofos get paid?

Sorry, venting. But hanging in there, I am determined now…I have to move soon and have nowhere to go. My prognosis will be a huge driver in whether I live in a van by the river or try to find a cheap rental near a hospital somewhere. So, I am highly motivated to keep going.

Hey Charlee,

Don’t you dare be apologising. We all need to let it out and what better place than here with people who have been there and know the realities of it all.

Prior to becoming a member here on Ben’s Friends I thought it was just me having all of these ‘Fun’n’Games’ with medicos, getting conflicting diagnosis, 1/2 answers or no answers or it all being labelled a psych. ‘Here, take a pill. That’ll fix it’. But these scenarios are VERY common. It truly was a ‘PHEW, I’m not the only one’ sort of moment to see that, because I really was starting to question myself.

The medicos were minimising my concerns and yet, as it turned out, each time I’ve gone ‘Ahh there’s a problem here’ I’ve required neurosurgical follow up within the next few months. This has made me a bit more firm in dealing with them. I’ve been managing all of this for years. I know my body and I know my signs that there’s an issue. They write my concerns off at their own peril. I no longer put up with that “I AM a brain surgeon; you may kiss the ring.” attitude. I know ‘Me’ better than anyone.

WE NEED TO HEAR THESE SORTS OF THINGS because believe me you are not the only one having to deal with and manage it all. It ain’t easy. Ideas around the way you manage the good, the bad and the ugly could be that little spark that some else needs to move a bit further on in their own journey.

Rare conditions are exactly that, rare. Not everybody goes through all of this, luckily. Having that empathy and understanding from people who know from their own personal experience is invaluable. We need it.

So, vent away, no apologies needed.

Merl from the Moderator Support Team

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