Chiari Online Support Group

Chiari related or something else?

Hi again,
Only my second post here, very new to chiari diagnosis. I understand others suffer incontinence related to their chiari, can anyone please tell me, did this happen very suddenly or was it a slow progression? The lasts few days I’ve come very close to Peeing myself?! My chiari was only diagnosed in dec (2017) after a hospital admission for migraine and is 6mm, I’ve had a head ache since, which is mild to medium and constant. I just wonder if something has “set off” symptoms of this chiari. I’ve looked through a lot of posts and have so many of the symptoms people have listed and have had for such a long time. I’ve never had a nearly 2mth long headache before though. Another weird one, sweating head?! Like crazy sweats with the smallest of temp rise or activety. I’ve always blamed hormones but wonder if it could be related? I did have my second baby only a few months back though so I’ve just put a lot of my symptoms down to that and tiredness (the hair loss has to be normal postpartum stuff, happened with my first, I’ll be bald if I have any more babies haha) anyway, would love to hear how others related their bladder control issues to chiari and how they came about? I feel like it was pregnancy and birth related it would have happened before now, 5 months later?!
Thanks all :slight_smile:

Dear KTfromOz,

Wow. You absolutely have Chiari symptoms. Incontinence is 100% a Chiari symptom. Yup. In fact, when I went to my Chiari neurosurgeon specialist, he had me take two other tests besides the MRI: the tilt-table test (measures blood pressure control) and an incontinence test. I was glad that my Chiari’s had my brain so numb and dumb - because it was a humiliating test - yet I was totally unable to feel the shame of the ‘pee test!’ In the test, I had to sit over a port-a-potty thing while a catheter filled my bladder with water - and then apparently the fact that I couldn’t control how it all came back out proved that I had NERVE problems and not BLADDER damage problems. :no_mouth:

But, yes. Incontinence is very much a Chiari issue. Even post-surgery, I have to be close to a restroom all day long. I no longer wet my pants like I did pre-Chiari surgery. Whew! But, on days when I still feel like my CNS (Central Nervous System) is off and weak, I will wear little ‘diapers’ - or feminine pads - just in case!

And, Chiari symptoms can come on either slow - or BOOM! My ‘permanent’ headache began suddenly one day when I woke up in 2002. At that time I already had other symptoms. The all-over-nerve-buzz-numbness symptoms came on very very slowly. The same time I got the sudden headache, I also started getting involuntary muscle jerks all over my body. I still have that permanent headache - but keep it under wraps post-surgery with low dose amitriptyline. The muscle jerking went away with the surgery.

Don’t be surprised that your body temperature is whacking out also. The bottom line is that your 6mm (And that’s LONG! Mine was only 1mm and it reeked havoc just the same - the length of ‘brain ooze’ doesn’t determine the symptoms or amount of disability - said my neuro-doc) … your 6mm of cerebellum ‘brain ooze’ out from under your skull is squishing down on your brain stem. The cerebellum is in charge of muscle coordination.

That cerebellum ooze is pinching down on your brain stem. That brain stem is so vital! Ever watch any zombie movies? According to “zombie-lore,” the only part of the brain that is functioning in a zombie is their brain stem. That means just the automatic stuff that you don’t have to think about: digestion process, breathing, cardiovascular, tears in the eyes, eye-lens focusing, AND body temperature control. Your body’s homeostatis - which involves maintenance of body temperature - is the work of the brain stem.

Right now, your brain stem is compromised!!! It’s having problems maintaining your body’s temperature. Prior to my decompression surgery, I thought I had a 24/7 fever. I went in and out of sweats and chills non-stop; winter, summer… made no difference. :roll_eyes:
Post -Chiari surgery, it took years for my body’s homeostatis statis to level out to a tolerable tolerance! I still am not 100% - but much better with maintaining body temperature. (I think my “normal” body temp has been knocked down to 96.? degrees. I am not the same as other people’s 96.5 - or whatever. So - I could have a fever at 96.5!)

Hope this helps. You’re not alone in this challenge!


P.S. By the way, if only the brain-stem runs the zombies, they would not be biting anything. The brain stem is nowhere near in charge of the hunger/ appetite/ center of the brain. So - the biting this is purely Hollywood. FYI… :thinking:

P.S.S. Just wondering… are you from Australia? (the “oz” makes me curious)

Thank you so much for your reply Beth :blush: oh my goodness yes! My body temp has been well out of whack long before I had a diagnosis (or children, so if it’s hormonal it’s not post birth formal related if that makes sense, my littlest is 5mth old)
When having my temp taken I seem to run cold usually 35degrees under the arm but I’ll be sweating and feel uncomfortably hot usually from my head only. Yep I’m from Australia :blush:
Argh it seems this chiari is to blame for a lot of my issues, it’s strange though that they have been going on so long that I thought it was normal?! It wasn’t until the neuro asked me to set a list of things that go on with me daily (and I actually had to ask my partner what I complain to him about regularly to get an accurate list as I just try not to pay attention to all the “niggles”!) and it was a loooong list. Then when I looked up chiari symptoms and found this site I find so many others have the same problems!
My diagnosis was after a severe and sudden mirgrine that lasted a week, the bladder issues having rapidly been worsening since then. Prior to that I had pretty control over it, even directly after child birth. I have another neuro appt in a few days to get results of second mri (of both brain and spine now to look for blockages) and will add it too my list of complaints! Isn’t it strange, when I was diagnosed Only two months ago I was told “oh it’s nothing really, it’s only 6mm and we don’t diagnose a Chiari Malformation until 5mm so your only 1mm over and it’s unlikely to be the cause of symptoms” by the neurosurgeon who the neurologist had see me as the neurologist felt all my symptoms could be explained by the chiari. So glad I found this site, sorry to be here with everyone though. It’s pretty unpleasant but by the sounds of things although I had a fairly full on “attack” if you could call it that will all symptoms intensifying it was brief and my normal is usually manageable with over the counter pain relief so sounds like I’m super lucky in that regard! Thank you again for your reply, I wonder if I will have to do the pee, I don’t look forward to it!! :stuck_out_tongue_closed_eyes:

Also forgot to mention, I did laugh at the zombie reference :rofl: I do love a good zombie flick!!

1 Like

Dear AussieKT,

Yeah - your list of symptoms are going to be Loooooooong! When the brain stem-spinal cord-brain system (aka - Central Nervous System) gets messed up, the whole body gets affected. That’s my theory why Chiaris is so hard to diagnose. The symptoms show up all over your body! For me, certain prevalent symptoms showed up in 6-month cycles. Like, for 6 months, my heart would beat and extra 2,000 beats a day. Then, that would quit - and then for 6 months I got horrible Irritable Bowel Syndrome (IBS), and then that would quit… Then, frozen shoulder would set in… and on and on it went for 10 years. That’s why my family thought I was a hypochondriac - making it all up for attention, or something. :face_with_raised_eyebrow:

Speaking of which… one of my very last mis-diagnosis which actually led me to the Chiaris diagnosis - was like that popular zombie movie - “Legend.” :thinking:
I worked from 1999-2001 in PNG (you know… that island north of you…) Well, in 2011, some Chronic Fatigue doc diagnosed all my agonies and paralysis was due to a retrovirus that I theoretically picked up in PNG! I was prescribed an extremely strong - and extremely expensive retrovirus medication at that time. (A medication that AIDS patients take.) Of course, the medication did absolutely nothing. I felt as wretched as always for 2 more years. I continued to grow even more paralysed and brain dead with each passing day.

That’s when the “Legend” movie came out on TV. As I watched it, I could relate so much to the zombies. EXCEPT for all the energy they had. Viruses never provide energy. I always wondered why zombie-movie-makers think that virally inflicted people get energetic??? Seems quite the opposite to me. But - I definitely could relate to the zombie’s grouchiness. I really did want to just ‘zone out’ in a dark place - and then lash out at any kind of stimulation that provoked pain.

Anyway, it was the “virus” diagnosis that led me to Chiaris. I was forced to move in with a friend in NC and needed to re-establish a whole new medical system in a new state. In order to continue getting the prescription of antiviral meds, I went to a Chronic Fatigue Specialist in Charlotte. And, in half an hour, she told me I didn’t have any viral issue - I had something called Chiari’s Malformation. And, there was surgery that could potential relieve it!!! I had no idea. Never heard of Chiaris before then!

Do you have a decompression surgery planned on the horizon? I know a lot of neuro-docs try to manage Chiaris with medication. That would never have worked for me. When the skull is too small - and is squishing your brains out - I have a hard time figuring out how medicine is going to help. Drugs can alleviate symptoms, like the pain and all - but will never fix the problem. I actually had the base of my skull widened with a little “triangle of calf bone,” I was told. And - half of the C1 vertebrae removed. And, the ‘oozing’ 1mm of brain cut out. I only have permanent re-occurring symptoms because I waited too long to have the surgery (10 years of being mis-diagnosed).

I hope that Oz has a good selection of neuro-docs to pick from!


1 Like

Hi Beth,
I have also had the chronic fatigue syndrome (and fibromyalgia) diagnosis for my odd goings on with my body! I believe a blood test showing antibodies for Epstein virus (glandular fever?) led them to cfs diagnosis as I complaining of extreme body fatigue and pain ever since a horrible flu which in hindsight was likely glandular fever. So they figured it cfs due to glandular fever (which makes sense) but doesn’t explain the rest of symptoms but I didn’t know different at the time, this was going back 10 yrs. I met with the neuro this week and they did discover a small csf blockage but they wonder if it’s actually dispersing rather then growing so they are going to monitor it for a bit to see. As far as my day to day symptoms go, I’m teally very lucky in that they are very mild and at most I might paracetamol. So no surgery on the horizon yet which is great. I’m terrified, not so much of the surgery itself, but of the recovery and potential for worsened symptoms. I’ve got two babies, 2 yros and a 5mth who is still boobfed and I can’t comprehend trying to recover and care for them and the 5mth old get furious if he has to have a bottle so it would be pretty awful me, the kids and their dad! I think I just need to keep in touch with docs and on top symptoms. Fingers crossed! I hope you are getting along well, thank you for your reply :blush:

Dear KTfrom Oz,

I do hope your symptoms remain mild. I’m recalling in my younger years, I had repeated “mini-symptoms” that came and went. For example, when I was 35, I had a 3-month long panic attack which had all the pain and agony of a heart attack. I went into the Emergency Room and saw a cardiologist for those 3-months - and all they said were that my tests kept coming back “normal.” Now I know! There was not a thing wrong with my cardiovascular system - it was the nerves… the ‘electical system’ of the body that was misfiring.

I had other funny symptoms pop up - giving me hints; months of muscle spasms, gagging on food & fluids, right eye went blind… on and on. But nothing lasted nor disabled me for good. Not like NOW! :neutral_face:

I often wonder if I would never have gotten severe Chiari symptoms if I didn’t go to PNG (that dinosaur-shaped isle to your north) and got my head bashed around from the wild traffic/pot-holes roads. I honestly think that was a trigger; hitting my head on the roof of a van repeatedly w/o seatbelts. At least you have a diagnosis - and pretty much know what in the world is going on. Sound like you have a pretty good medical support team that are letting you know what’s going on, too. Keep well!