Aden Withers on Chiari and preparing for surgery

00:01

And there we are. We’re coming from mentalhealthradio.ca, of course. You’re listening to In Conversation With, Season 3, Episode 10. My very special guest is Aden Withers. How are you, Aden?

I’m good, thank you. How are you?

I’m not doing too bad, you know, for an old guy. We’ve known you for a day or two, I would say.

Oh, definitely. Yeah, for sure.

More than a day or so. Since we’re friends on Facebook and in real life, I noticed something on your profile. Do you mind if I share it with people?

Yes, absolutely.

Okay, go ahead.

Oh, I just wanted you to finish what you were saying.

I was on your profile. I wasn’t being creepy or anything, but you come into my feed quite often. I’ve seen that you have something like a brain malformation called Chiari?

01:08

That’s correct. I have a rare brain malformation called Chiari malformation, and mine is Type I. It’s not life-threatening. That’s great news for me. There are many types of Chiari, but mine is one that can be corrected through surgery. That’s what I’m hopeful for.

I think there are four types of Chiari, if I remember correctly. The one I have, like I said, is not life-threatening, but the other three types potentially could be very life-threatening. Especially the last two types, Type III and Type IV. Usually people who have those don’t live outside the womb, and they’re often paired with spina bifida. It is a form of spina bifida, but it happens more towards the brain rather than at the base of the spine.

Is it like a swelling of the brain? Is that the main thing?

02:38

Chiari malformation is where your cerebellum, the back of your brain, is distended past into your foramen magnum, which is the space between your spine and your brain. Originally, they thought mine was only 5.2 millimetres herniated because they took a CT scan. They did an MRI and found it’s actually closer to 6.6 millimetres, which greatly affects the cerebrospinal fluid flow, the CSF flow.

The CSF flow isn’t flowing into my brain properly, and it’s causing a lot of physical symptoms. I have limb weakness, and I’ve had migraines my whole life.

Sometimes it’s come to the point where I get what’s called a Chiari drop episode. That’s where fainting happens because your CSF flow is restricted. Your heart has to pump faster, so you faint, and it also gives stroke-like symptoms. I have limb weakness, I lose speech, and it’s a very awful and scary thing to experience.

04:17

It took me a long time to get diagnosed. Because it’s so rare, a lot of doctors don’t know about it. When they Google it, they only find the best outcome for patients. They don’t know more in depth about how it can affect people. They were blaming it on psychiatric reasons. That was why they thought I was having these fainting episodes. They tried to treat me for depression and all kinds of mental health issues. It was actually my brain malformation.

Among the physical things it can cause, it can also cause depression and intellectual disability, which is what I was diagnosed with.

It wasn’t easy to get diagnosed. When I was young, I had neck pain often. My mom took me into Ronald McDonald House and Calgary Children’s Hospital, trying to find out what the diagnosis was and why I kept having neck pain, but nobody figured it out.

05:27

In 2014, it was noted incidentally on a CT scan, but it was never mentioned to me. It wasn’t mentioned until last year, when I accessed my own records and read my CT report. That’s when I first saw the words Chiari malformation. I brought it up to my family doctor because the doctors at emergency weren’t taking my migraines and drop episodes seriously.

I mentioned it to my family doctor. My family doctor said, “Your symptoms can’t possibly be related to your brain malformation. It’s not that, but I’ll still do the referral.”

06:56

I asked to be referred to a neurosurgeon. It’s important with Chiari, if you have it, to be referred to a neurosurgeon and not a neurologist. Neurologists deal more with pain management and symptom management. A neurosurgeon does the surgery and focuses more on fixing the issue. A neurologist will give you lidocaine injections, which do help for people who don’t want surgery. The surgery is the only definitive cure for Chiari, and it’s not even a cure. It’s just making more space in your brain.

07:58

When they do Chiari surgery, they cut the base of your dura open and place a mesh patch to make it bigger. They shave down the C1 vertebra of your spine, the piece that connects your head to your spine. When they do that, there’s a lot of cervical cranial instability. I’ll have to wear a neck brace for a while. It’s the only known effective treatment for Chiari.

The reason I chose surgery is I didn’t want to go through life constantly getting injections, constantly having migraines. I’ve lived that life for so long, and I’m done taking medication after medication and hoping it’ll fix my issue when it hasn’t. This is the next step.

09:21

Chiari only affects about one in one thousand people, and most people are asymptomatic, meaning they don’t experience symptoms. However, it’s likely, they say, that it affects one in one hundred people, but the majority go undiagnosed and it isn’t symptomatic. It’s not really something most people should worry about. But if you start to have vision issues, constant migraines, back issues or limb weakness, any signs like that are worth getting checked out.

10:09

The surgery has a very high success rate. From my perspective, joining Chiari groups and researching my disability, I’ve seen a lot of people have a lot of success with surgery. That’s one of the reasons I chose it for myself. Even though, yes, technically it is brain surgery and it’s very scary to go in and have it done, my hope is that the daily migraines and limb weakness, and maybe even part of my intellectual abilities, will be helped. My brain will have more space to do its thing, and I’ll have more CSF flow into my head.

Right now, I’m saying “uh” and “ah” a lot because I’m trying to remember exactly what I said. Part of my condition causes brain fog, so I don’t always remember word for word everything I say.

11:28

I’m trying to raise awareness because it affects a lot more people than we think. I believe a lot of people go undiagnosed throughout their lives, and it negatively impacts their quality of life. It’s something that’s totally curable, that most people wouldn’t even think to check. I was diagnosed in 2014. They noted it on my CT scan and never bothered to check in with me. I’ve had spine issues since I was a child. I was diagnosed with scoliosis.

12:19

I think it would be really nice if more preventative measures were taken, because my condition comes alongside a lot of other conditions. It’s a comorbidity. What I was diagnosed with is Marfan syndrome, and that’s a connective tissue disorder. It often creates more space in your foramen magnum, the space between your spine and your brain.

13:01

Ehlers-Danlos syndrome is another common comorbidity, and it’s also very common in autistic individuals. If you have a connective tissue disorder or an immune-compromise disorder, I highly recommend getting your cerebellum checked, because a lot of the symptoms overlap.

13:49

I’m always wondering for myself, what’s a symptom of my intellectual disability and what’s a symptom of my Chiari? I’m hoping that with this surgery I’ll have more clarity and finally understand: am I intellectually disabled, or was it just my brain? Do I have the capacity to learn the things I missed out on? It’s really hard, because I feel that, since I went undiagnosed for so long and was in pain for so long, I couldn’t excel in life the way I wanted to. That’s the really frustrating part about the Canadian health-care system: the wait times are so long and people are going undiagnosed.

It’s really hard to get the care we need, and I’m sure a lot of people with other conditions can relate to that.

15:00

It really sucks having a rare brain condition. It took so many doctors and professionals to finally find the neurosurgeon I found, who said, “Yes, all your symptoms are caused by your brain malformation and you need surgery.” I go for my surgery on June 19th. They’re going to cut, I believe he said, a 10-centimetre incision into the back of my head.

One of the common jokes about Chiari is that we’re called “zipper heads,” but I personally don’t like to use the term because “zipper head” is something they used in Vietnam and World War II.

I will have a 10-inch or 10-centimetre incision on the back of my head, and it takes six weeks to recover from the procedure. They put my head in a vice, cut into the back of my head, and shave down the back part of my skull and the top part of my spine to make more room for my brain. Then they put what’s called a dura patch, like synthetic tissue, over the back of your brain to give it more room and allow more CSF flow.

16:45

You said they put a titanium plate there as well, or in between the two?

Yeah, they put a titanium plate over the dura patch to protect it. That’s why after surgery we can’t ride roller coasters or do anything super high-impact, because we run the risk of being internally decapitated if we do those things. High-contact sports will be off the table. Scuba diving will be off the table because it is classified as a traumatic brain injury. It’s something I’m willing to do in order to increase my quality of life.

17:37

It affects my life. I work as a behaviour interventionist with disabled people, and a lot of my job is bending, lifting and being very physical. When I do that kind of activity, I get very flushed because my fluid gets blocked at the back of my brain. My heart has to pump harder, I get very flushed and I almost faint.

The heat is the worst for me. When it’s hot outside, my veins swell, so the CSF flow is even more blocked. I get very hot very quickly and overheat. Part of my job is being outside with the people I support. I can’t do my job properly without the surgery because I won’t be able to bend and lift or be out in the heat, and those are things I want to do so my clients have an included and supported lifestyle in the community.

19:08

You said you go for surgery on the 19th of this month and then have about six weeks of recovery afterwards. I was wondering if we could get you back after surgery and recovery and see how you’re doing. I know there are a lot of people curious about this, and we always like to follow up.

Yeah, if that interests you at all, I’d like to do that again.

19:40

I have to bring this to a close. I wanted to show you something and see if it brings back any memories. Are you prepared for this?

Yes. Oh yeah, I made that.

Do you remember this at all?

That was the first rattle I made.

Yep, ever, and I still have it.

That’s amazing. That was 15 years ago now.

Yeah, that was 16.

I think that was around the same time you made your 16th birthday dress at the Kelowna Friendship Centre, if I remember correctly.

Kelowna, yeah, I remember that. I’m still involved with them and still do programmes and activities. They’re supporting me through this surgery, and they’re supporting my son through the surgery too, so that’s really nice.

20:47

I also noticed you had a GoFundMe. Do you want to talk quickly about that, so if anybody’s interested they can send you some money if needed?

I have a GoFundMe set up. I’ll send you the link. It’s to cover the cost of my partner coming to stay with me in the hospital. I have an autistic, low-vision son who requires 24/7 care, so I have a friend coming to stay. My GoFundMe is set up so we can get meals if we need something to eat after a hard day, get to and from appointments, or cover my wages. I work independently and don’t have insurance through a company, because I am my own company. It’s to help cushion the blow of not being able to work for six weeks and having extra support around, not only for myself but also my son.

If you want to add that link, this will be posted on the Mental Health group. I know you’re a part of that, and thank you for supporting it. If you want to send the GoFundMe link when the podcast is up in the group, that would be greatly appreciated.

Yeah, for sure.

22:35

All right, thank you so much.

You’re very welcome. I want you back so we can talk about recovery and see if we notice any difference, and hopefully your migraines go away.

Yeah, thank you so much for taking the time to talk about my condition with me. It really means a lot to help spread awareness.

Exactly, and that’s what we’re here for at Mental Health Radio. Thank you once again for coming by, and we’ll talk to you soon.

All right. Thank you. Bye.