Frustration continues

Saw the neurosurgeon yesterday. He says No to a Chiari-related respiratory difficulties (chronic progressive dyspnea, respiratory failure), because it is not big enough (5.5mm) to block flow and/or affect nerves related to breathing. He suggested a neurologist visit to further evaluate. He was OK for a NS, but till rather arrogant and somewhat dismissive. His after visit report had inaccuracies (so common) such as stating this or that test evaluation was normal when he did not even do the evaluation. I see this a lot. Its as though the docs tick some boxes on a form that say yeah I did it and its fine. May or may not matter for diagnosis or treatment but it speaks to their honesty and integrity imo.

Also had the sleep study, but only slept a couple hours. The tech said I had no problems during that time and suggested the at home oximetry could actually be wrong (the oximetry showed 70 events an hour with desaturations below 88 most of the 7 hours). Wow. THAT wrong? So confused, but of course I would be thrilled to not need o2 or pap machine.

I know nothing more than I did 2 months ago when things went awry again (leading to an ER visit and a re-investigation into my chronic dyspnea and hypercapnia).

But, I really hate the medical industry and generally just accept my situation and follow a healthy lifestyle. For so many reasons, the whole process makes me feel worse - stress, frustration. A lot is about attitude both mine and theirs. I am not obsequious or servile enough for most. I see them as a hired consultant from whom I expect intelligent considerate information. Too many expect me to kiss their precious butskies.

Maybe if I get bad enough I can continue the process. For now, I think I will go about life as well as I can and skip the docs.

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Hey Charlee,
I completely understand the ‘frustration’. “He was OK for a NS, but till rather arrogant and somewhat dismissive”. And this is VERY common. That attitude of 'Well, I’m the N.S. so I know. You? you’re just the patient. You wouldn’t know…" can be extremely infuriating. As I often say ‘We don’t choose to be in this situation…’ but when we have symptoms minimised and discredited this just feeds that frustration. Some of them make out they have ALL of the answers. They don’t. They may well know what their textbooks and lecturers have told them, but I’m not in their textbooks.

I have questioned them on a few occasions and OHH BOY!!! they do not like being questioned, in fact, I was labelled a ‘Non compliant patient’ because I disagreed with them. I had one accuse me of trying to obtain financial gain, like I was going to sue him, which I never have and never will. I was looking for answers not $$$$. Eventually, like you I got to that point of:-

If my symptoms vary or increase to a point of concern, then yes, I’ll act and promptly too. But until then I’ll get on with as much ‘Life’ as I can.

Merl from the Moderator Support Team

Dear Charlee,
That disturbs me that your NS said your tonsil was “only” 5mm! My NS, who fortunately specialized in nothing but Chiari’s, said that the length of the tonsil makes no difference whatsoever in affecting symptoms. He told me that one of his patients had an inch-long tonsil, yet only had slight tingling in the fingertips. Meanwhile, another patient had 1/2mm tonsil, and had to be rolled into his office in a wheelchair. A plug is a plug. Mine was “only” 1mm! My symptoms were so severe, I had only 6 more months to live had I not had the surgery.
Because it is the brain stem that is getting the squish, you will have respiratory distress. Months before my decompression surgery, my diaphram would suddenly stop. I had to consciously and manually breathe for half hour at a time. Very scary. The brain stem is in charge of everything automatic in your body, including your sleep and wake cycles - which is why your sleep patterns are disrupted. I went to a sleep study several times, all to no avail. CPAP didn’t help - because that was not the problem. Because I did wait so long to have decompression surgery, I have permanent brain stem damage. My sleep is permanently disrupted, and I need help getting and staying to sleep. I know it’s frustrating - but the longer you wait to get decompressed, the less chance of full recovery. That’s what my NS said. I’d keep at it! At least you do have a diagnosis! (I got my surgery 6 months after diagnosis. I went 10 year misdiagnosed.)

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I’m the same… some people have many symptoms with minimum herniation while others have none with greater herniation! I too am
The same with being misdiagnosed for years and because surgery was delayed I have many residual symptoms. I too have horrible sleep issues! It has been 8-10 years since my surgery (bad memory now too) many of same symptoms have returned but because “decompression still looks good” I’m
Fine they say!!! I have now read some articles that say symptoms can return in some patients and no one knows why!!! I know I try to just live life even with all issues chiari has and continues to cause!

Dear Deena,
Even my Chiari Neurodoc told me that they were not sure - yet - whether the decompression guaranteed a life-long fix. I get the impression that you and I are first generation Chiari-decompression-surgery patients; that Chiaris wasn’t really easily diagnosed until the advent of the MRI - and the decompression surgery evolved around the year 2000 or so. That means, the neurosurgery world is watching US to see the lasting (or not) results of the decompression surgery. Even my specialized Chiari NS told me, “We don’t know if the surgery is going to be good for the rest of your life.”
Like most Chiarians, I took what I could get, and am running with it! (I do find that very low dose Amitriptyline - 5mg - does stave off nerve pain - for me) I also find that a simple can of Pepsi can really fire up my Central Nervous System when it wants to shut down. Odd. (the rest of my body doesn’t react well to too much Pepsi. But my CNS loves the stuff…)

I have adopted a low medical industry interaction for a long time now. And like you, only engage when something new and concerning arises. Like now with the increased shortness of breath, neurological symptoms, and new "spells"etc. But, I am managing OK and these spells were not an emergency so I think it is time to back off again. Most of the treatment options I understand are steroids (for autoimmune) or surgery (if it is the Chiari) and neither are of interest to me. If things got particularly bad, I might consider a round of steroids treatment to see how I do on them. Surgery is not an option, I will be 65 next week and I have other confounding issues that makes an already risky and questionably successful surgery unappealing to say the least.

So great to come here where people GET IT!

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Thanks for your response. Someday there will be clarity on Chiaris related to size and impacts and relative benefits of surgery. I have lived with it for almost 65 years now, I will hang in there at least a few more. At this point cancer or heart disease are a bigger issue - if indeed the Chiari is not responsible for my respiratory failure.

I will look into the amitriptyline as a possible adjunct to CBD. Thanks!

Yes Deena, that seems to be the best attitude for me to take too. In fact, one PCP told me - when I had a bout of intense autoimmune vasculitis - “just deal with it”. It was so harsh and so inconsiderate and uncaring but it is the bottom line no matter what other modalities are used. At some point you have to accept and live with it as best as possible. Usually I do so with a lot of joy. I am finding it harder to get into that joyous place - though that is at least as much due to the state of the world as my individual health. Now winter has arrived in the far north of Vermont which makes things that much more challenging. But, I am confident I will adjust and find that inner joy with the pleasures of the quiet and solitude winter brings…

And those are the things that every patient needs weigh up for themselves Charlee.

Surgery should never be undertaken lightly and careful consideration needs to be looked at prior. Do the benefits outweigh the negative recovery/side effects, etc? For some the answer maybe a clear and resounding ‘YES’ but for others that may not be so clear cut. I think that’s the same for any management tool be that surgery, medication or alternative therapies. Some medications are just horrible in their side effects. Some alternative therapies can be expensive hocus pocus or pseudo science. BUT, if someone receives a benefit from any therapy then they should use it and these are the things that need to be weighed up.

I’ve lost count of how many members who have been diagnosed as having a minimal tonsil but are HIGHLY symptomatic and medicos saying ‘You can’t be having symptoms…It’s not big enough’. And yet we have others whose tonsil should be causing symptoms but hasn’t and has only really been found incidentally whilst having a dental scan or a neck x-ray. Although many Dr’s are of the opinion ‘Size matters’, when it comes to symptoms.Yes it can, but not always.

Now I’m in a state of what I call ‘Symptom Management’. If I can manage it, I do so. If I can’t, then there’s an issue and it’s time to act.

Merl from the Modsupport Team