Welcome to Ben’s Friends
If you are symptomatic then yes, you should. I say this because I too was having ‘weird’ sensations/symptoms that were written off as growing pains and hypochondria “You just can’t be having pain like that. It can’t be THAT bad…” but it wasn’t just THAT bad. It was worse. I was made out to be every type of crazy. So I ignored it all, ignored all of those weird symptoms for years.
Then one day I’m driving down the road and the lights went out, I couldn’t see. I returned to the PCP who reluctantly sent me for a scan, then he came out with the line ‘Ohh look what we found…’ as if it was all something new. I’d been telling them for many years something was amiss. Although my situation is not directly chiari related, it is neurological, and my ICP levels were HUGE as the fluid was blocked up and couldn’t escape my skull at all. So, they operated and I was told ‘All fixed’ but it wasn’t ‘All fixed’ at all. I was placed on the medical roundabout, having all sorts of scans/tests/treatments (including Botox) but to no avail. I was given all sorts of pseudo diagnosis ie ‘Well, it could be… or it might be…’ but no direct answers.
Do not be discrediting your ‘weird urinary urgency’ too quickly either. Taken in isolation urinary symptoms can be just that, ‘weird’, but when it comes to neurology, urinary symptoms can be a precursor or an indicator of greater underlying issues. Often when we report such symptoms they can be viewed in isolation. We get sent to individual specialists and obtain individual views, when sometimes a more wholistic approach, taking the whole ‘you’ and all of your ‘odd’ symptoms into consideration.
I’m in Australia and here we have General Practitioners (GP’s) which are the same as your PCP’s, then we have physicians, then we have specialists and specialist surgeons. GP’s are good for your common illnesses/ailments and if they know which specialist to send you to, will do so directly. BUT for some people there needs to be a bit more of an investigation of symptoms and this is where a physician can be useful, as an investigator. They can order tests and scans and collate all of the individual reports to provide a more complete overview of the patient.
I find this very confusing as any changes in intercranial pressure can cause dizziness. I’ve had the ‘joy’ of both high ICP and low ICP and both gave me huge dizzyness/balanace issues. Admittedly, with type 2 and 3 these symptoms are reportedly more common, but they are not unheard of with type 1. Some medicos like to give us ‘labels’ or make us fit into a particular diagnosis box. The problem arises when some of our symptoms don’t fit their ‘boxes’. P.S. I don’t fit their boxes either. None of us are ‘wired’ exactly the same, we are all individual and because of this so can our symptoms be very individual. The focus should not be so much on type but rather symptoms.
If you are symptomatic, then in my opinion, you have every right to investigate. ‘What is going on?’ OK, so if the dr says it’s not Chiari related, then what are these symptoms related to? Nobody else can feel nor relate to your pain nor sensations. I’ve tried to explain to people the sensation/pains and get looks like I have a 3rd eye growing out of my forehead, disbelief. I’ve had dr’s tell me “It can’t be THAT bad…” but unless they’ve been HERE how would they know? They wouldn’t. Only you know how bad BAD can be because you’re the one living it.
So, that’s my opinion
Merl from the Modsupport Team