Arnold-Chiari malformation

So I think most patients, if they cough or sneeze, if they have a headache, often the headache will feel worse.

But if your headache is actually triggered by doing that, that potentially suggests something called an R- Arnold-Chiari malformation, so a secondary cause for the headache, um, and somebody you may want to be thinking about brain imaging in.

Progressive headache, so somebody who starts with a headache and is gradually just getting worse, kind of relentlessly, um, is, um, a red flag.

And then the final P is pregnancy.

Good evening and welcome to Believe in the Journey podcast where I am your host Trevita Harris.

And tonight I'm just going to be talking to you guys simply about Chiari malformation and how it is Chiari malformation awareness month.

And I just want to talk and bring some awareness to that condition.

And I want to talk about the importance of having a support system with dealing with any kind of illness, but specifically Chiari malformation.

But before I do that, before we do anything, we have to go to God in prayer.

Dear Heavenly Father, thank you for bringing me here tonight in front of your children.

In your precious and holy name, Jesus, I pray.

Amen.

Um-

You do the Chiari malformation.

Do you do any of the Chiari surgery?

Yeah, do that.

All my partners do that.

Interesting

... of surgery, but it's a commonplace surgery for neurosurgeons.

I had a patient on recently, they had a Chiari malformation surgery and was allergic to the metal at the base there.

So I was like, oh, those are the days I can take myself on vacation.

writing dates no none of that happened um it was a rough summer health wise i'm going to give you a quick overview because this this will be boring if i go into too much detail but quick overview first two weeks i had a migraine that did not quit for two weeks so one of the symptoms i have in my neurological condition is just really brutal migraines this one medication was not touching the edge of it like no like I was waking like I was sleeping with a migraine it was waking me up throughout the night I had a migraine all day it was it was just exhausting and alongside that like all of my other neurological symptoms as well but it was brutal by the end of two weeks medication was like something was taking the edge off thankfully and it was just recovering and then we had a trip booked to London so we went to London Thursday to Monday and we had like a really beautiful trip in London we like took August to its first musical and we like went to museums and we had to like kind of pace ourselves so we'd get out in the morning and do things and then we'd come back in the afternoon so mostly I could rest and August could have some downtime so I really like in a good way no I don't I'm this is a neutral statement but like I pushed myself when we're in London to make sure we could like create the trip we wanted for August and have a nice time but when we got back my body crashed a little bit Like my Chiari symptoms were just raging.

Like I kind of just, I needed a few days just to like recalibrate and recover.

Thankfully, August was in camp a couple of days and we got back.

Thankfully, he works from home a lot.

But it was also just like a big adjustment, like family routines wise.

And so, yeah, I was basically sick every single week of the summer, whether it was Chiari sick.

And Chiari's kind of been symptomatic the whole summer.

I

have thought about donating my body to science, no joke, because of my Chiari malformation.

And it's not studied at all.

Like

Chiari is not backed or it's not really researched because no one really cares.

But

they

It's a kitty with...

Chiari-like malformation.

So essentially his brain is too big for his skull and it tries to kind of pop out and he gets all this pain, like headaches type things because of it.

So he's basically lived with this like chronic headache for a really long time.

Okay.

Patients with spina bifida frequently have associated Arnold-Chiari malformations or hydrocephalus.

So we're dealing with downward displacement of the cerebellar tonsils-

Yeah

Is it intimidating or do you welcome that? What's your perspective on that, Alan?

It can be helpful, but yeah, there is Dr. Google and the internet is something people come armed with a lot of information about little Johnny's Chiari malformation, more information than the residents in training have available to them.

and it keeps us on our toes, and it can be helpful because we can have a very educated discussion about things.

But I think it's, again, the kind of thing that is not going to replace the physician.