Syrnix question

General
#1

To make it short and sweet. I have been experiencing symptoms since at least 25. I was brushed off every time I brought up issues that are all symptoms of a Chiari. I wasn’t diagnosed until a broken nose which resulted in an CAT Scan to make sure I didn’t have a concussion. Diagnosed at 33 I was pretty much told I was fine b/c my coordination isn’t compromised. That said my back pain has been increasingly more severe over the past 5 years. I brushed it off at first as age and taking it too hard at the gym but now the pain is constant. I recall days I do not have severe back/neck pain more than the days I don’t. My current neurosurgeon who I have only consulted with twice since diagnosis acts as though it is of no concern. Any advice or suggestions? I’ve just been treated like a hypochondriac for so so long that I back down anytime I’m meet with resistance when describing my symptoms. (…also I have a number of other Chiari issue but I find them manageable even if inconvenient…severe morning headaches, prolonged dull headache for days, dizziness, anxiety, etc)

…again any advice would be helpful.

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#2

I’m going through that now 2 years after my Chiari malformation decompression surgery. I also have cysts that never collapsed on my spine since surgery. I’m dizzy blurry vision headaches, horrible neck shoulder blade pain, watery eyes, balance is off. I get numb in all extremities. I get stiff neck and back, been to so many specialists in the last 4 months. My docs act like it’s no big deal either. I had to take fmla from work because I couldn’t see or think properly. Oh did I mention the dazed/brainfog feeling? It goes on and on. The answer for me is galvapentin and heating pads and ice packs. I’m so sorry your going through all this.

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#3

I also experience numbness in my tongue and feel like something is caught in my throat. I’ve had 2 MRIs done on brain neck spine and they did a CINE flow study. I’ve had the EEG done. EKGS. Bloodwork of all kinds. I recently had an ENT put a camera down my nose to throat, he checked me for neck and head cancer. They keep giving me a clean Bill of health. I beg to differ.

#4

Hey Andy and Suzy,
I’m sorry to say it like this but your experiences with the medicos are not unusual. I too was repeatedly brushed off or just labelled a hypochondriac for many years. Seems I was imagining it all, which would have been great because then I should have been able to imagine it all away, only it was all too real to be imaginary. So, I ignored it all. It wasn’t until some 20yrs later that I had an incident that made them investigate a bit further, they came out with the line ‘Ohh, look what we found…’ as if it was all something new. I was SO VERY ANGRY. I’d been telling them for years something just wasn’t right ‘Oh, but your file says you have a history of hypochondria…’ No, I have a history of false diagnosis.

Then they operated, but things still were not right. Their attitude was ‘We operated, we fixed’, my view was ‘Well, if this is fixed I can think of another ‘F’ word that better describes it all’. So I went looking for answers. Like you Suzy, I went and had all sorts of scans, tests and examinations but the results were inconclusive and that line of ‘Oh, but your file says you have a history of hypochondria…’ kept coming up. Seems once that hypochondria diagnosis is given it follows you everywhere and is an easy out for any medico. The closest I came to getting anything like an answer was from an ophthalmologist who stated ‘Well, you’ve had brain surgery, what did you expect?’ I didn’t expect ‘THIS’.

I have symptoms everyday. Some days that’s manageable, some days it’s chronic bad, but what I look for now is a progression of symptoms. For me, a headache… …that’s normal, but if that headache progresses to one sided numbness/tingling, then progresses to nausea and vomiting, I need to act. These are my signs and over the years I have learnt which signs, for me, are ‘normal’ (as if any of it is ‘normal’) and which signs are an ‘Act Now’. You too will learn you signs, but I can assure you trying to get the medicos to accept that ‘Somethings not right’ is near on impossible, if the scans show no issue, then there’s no issue, according to them. Our views or reports of symptoms are often taken as hearsay and often the easiest answer is hypochondria.

Merl from the Modsupport Team

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#5

Thank you @SSTOFKO and @ModSupport. If nothing else it is calming to know that even if this is my “normal” for the rest of my life, that I’m not a crazy person. I’m thankful to have found this forum. There was a year or so period before my diagnosis where I began to be riddled with anxiety for seemingly no reason besides that I felt “unwell” and “not normal”. My previous neurosurgeon left the practice I go to so I am hoping for perhaps a little more understanding or interest when I see my new doctor at my yearly check-in this summer.

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#6

Your right I’m flagged as a Hypochondriac and anxiety ridden. But I had brain surgery as well, they claim it worked. But I know my body and I’m not right. The worst for me is my brainfog and blurry vision. But I get cramps in whole body, nausea and dizziness and forehead pressure. That is my daily normal . :cry:

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#7

Hey Andy,

No you’re not. You’re just as crazy as the rest of us :crazy_face:

It is my personal belief that often it’s put back on us, the patients, by the medicos to make us question ourselves. “Am I going crazy?” “Is this real?” If we’re questioning ourselves at least we aren’t questioning them. I think part of the problem is that we go to dr’s seeking answers, but when they don’t have the answers, we (or I) question them, question their knowledge and from my experience, ohh boy, they HATE having their knowledge questioned. As one neuro stated to me ‘…I’m the dr, I’ve completed years of study, so I know. You? You’re just the patient, you wouldn’t know…’ Arrogant sod.
But you know your body better than anyone and if something’s not right, you must speak up. With a former pcp of mine, he kept minimising symptoms ie ‘Ohh it can’t be THAT bad…’ so I ignored odd symptoms. I went for a follow up neurosurgical review and the surgeon was furious, questioned why I hadn’t spoken up, as there was an issue that required his intervention. I explained that the pcp was aware and neuro’s response ‘…Get a new pcp…’

And everything is fine… …but it’s not fine. Some medicos go by the imaging, if the imaging shows that their intended goal has been reached, then it worked BUT the imaging doesn’t’ show brainfog, it doesn’t show blurry vision or nausea or tingles and it sure doesn’t show chronic, excruciating, mind bending pain. But they tell us"…It worked…"
I’ve often said ‘Sometimes I think it would have been easier if I’d lost a limb. People would be able to see that there’s an issue’ but when it’s invisible often others have no clue of the realities of it all. It can be very disappointing when those ‘others’ include the medicos.

Merl from the Modsupport Team

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#8

Hello I haven’t been on here for a while but… I was diagnosed with Chiari in 2013 at 45 years old I had a sudden on set of symptoms that presented like a stroke. When an MRI was completed after the doctor’s thought I was a hypochondriac and it revealed I had 16mm of my brain compressed. Upon further imaging they found a syrinx in my spine. My Surgeon Dr. FRIM at the University of Chicago whom is excellent only gave me the option of waiting or decompression surgery do to the fact I could be permanently paralyzed if the syrinx continue to grow and impact my spinal canal do to the back of cerbal fluid. I choose the surgery because there was no way to know how long I had the syrinx, how fast it would grow r if it would resolve on its own which it did after surgery. All my other issues did improve such as headaches and my gait and swallowing issues but not the brain fog.

#9

@Vilgilant, do you find with your syrinx that you had a specific type of back pain. I just worry a bit b/c in the last year I have instances a few times a month that can best be described as a vice compressing the center of my back (what I assume is my spinal cord). I’ve participated in various sports and done free weight lifting the last few years…I know what feeling sore, swollen, or tight feels like and this isn’t that.