Dr. Colin Buchanan, a neurosurgeon at the Colorado Chiari Institute, talks about bringing awareness to Chiari malformation and treatment.
Interview conducted by Ivanhoe Broadcast News in 2023.
What is Chiari malformation? Is it something you’re born with?
Buchanan: So Chiari malformation is an abnormality of the cerebellum of the brain, which is the hind brain. And it’s a specific part of the cerebellum that lies too low. It- the tonsil of the cerebellum falls below the level of the foramen magnum, which is the opening of the skull. So it’s something that people are born with. It’s considered an abnormality between how big the cerebellum is and how small the bone is. What happens with it is it tends to block the flow of spinal fluid, up and down, between the compartment of the head and the spinal column. The tonsil of the cerebellum blocking that flow is what causes symptoms with this condition.
Talk to me about some of the symptoms, what would you experience?
Buchanan: So the common symptoms are headache. Headache is a very common symptom, it can be attributable to a lot of things. But a classic Chiari headache is pressure like headache at the back of the head. Often it’s worsened with things like sneezing or coughing or laughing. So that’s the typical symptom with Chiari. But there are a lot of other symptoms that people can experience: dizziness, balance problems, numbness or tingling in the arms or the legs, sometimes difficulty swallowing, sometimes ringing in the ear. Often people describe brain fog, which is probably a attributable to not feeling very well. But the thing that we associate most with Chiari is pressure-like headache at the back of the head that’s worsened with coughing or sneezing or laughing.
Does it impact men or women more frequently? And then secondly, are you genetically predisposed?
Buchanan: We think that has a genetic component, but we don’t totally understand what it is. It does affect women more commonly than men. We have some cases where it’s run in families, but again, we don’t know the exact genetic link.
Men versus women?
Buchanan: We don’t know the genetic link, men versus women, and we don’t know why it would be inheritable. But it is more common in women, typically at about a 2:1 frequency.
Is it often misdiagnosed and tough to find it behind a diagnosis?
Buchanan: It is very hard to stumble on this diagnosis. A lot of people are treated for headache for a long time before any imaging is done. And so, a lot of people can relate a story of having a chronic headache that they just thought was normal life, going back to when they were an adolescent or in their teenage years. And then in their 20s or 30s, at some point, MRI is that makes the diagnosis of Chiari. So it is very common for people to have that experience where this is thought to be just what it’s like to be normal, is to have a headache. And they realize later in life that it’s not.
And what is treatment?
Buchanan: Not all Chiari conditions need surgery. A lot of the time patients with milder conditions and milder structural abnormalities can be managed with physical therapy sometimes or headache treatments. But when it’s refractory to that, or if there’s a C ring, which is another thing that’s associated with Chiari, then we consider surgery for those cases. Surgery is a brain surgery, where we go into the back of the head and create more room for the spinal fluid to circulate around. We call it a posterior fossa decompression. It’s a surgery that takes three or four hours. People have to spend some time in the hospital afterward. But if we can successfully restore the CSF, the cerebrospinal fluid circulation around that area, people can get a lot of relief of these symptoms. So that’s the ultimate treatment for a Chiari, is if it’s bad enough, we consider doing that.
How frequently is that done?
Buchanan: We do surgery here, typically twice a week, for patients with Chiari. Probably of the patients I see, half of them will be surgery candidates. The other half will think, well, we ought to follow this and trend symptoms and see how you do over time.
Do you have patients who’ve been struggling with migraine or Chiari for decades and then find you, or are most of them, like Hannah Jane, that are young women or men that have had suffering?
Buchanan: No. We see both circumstances. We definitely see people who are younger, who are in their early 20s and they’ve had this diagnosis and it’s progressed somewhat quickly. And they need a little bit more urgent attention. We also see patients in their 40s who have dealt with it for quite a while and it’s a decades long problem for them. We see both. I would say, when people come in and they’re younger, it typically is something that’s a little bit more severe structurally. It’s affecting them a bit more, and they typically need things dealt with sooner.
Do they find relief?
Buchanan: I sometimes think that people get relief with surgery. I’ve had a few really good examples of people getting relief by doing physical therapy and headache management strategies. But I think what’s compelling is that when we’ve recognized this and we treat them surgically, a lot of people can be substantially better. So much better that they’re so thankful.
So when people think of brain surgery, it sounds scary and I’m sure there are risks involved. But talk to me about the risk of this surgery or procedure versus the reward.
Buchanan: Yeah. When we do this, we- we- we tell people that it’s a healing process. And right away after surgery, it’s not going to be very pleasant. It takes a few weeks for the surgery pain and inflammation to start start to subside. And one of thing, one of the symptoms that patients deal with right away after surgery is an acute worsening of the pain at the back of the head. And they also have quite a bit of nausea typically. So we we have to tell people that, there’s an unknown issue of having to heal from this. That most of the time you’re going to get through in a month or two and you’ll start to see the benefits showing through. Complications do happen it’s a fairly safe surgery, like any brain surgery, has to be done with tedious attention to detail, but most of the time it goes really really smoothly. The thing that we worry about most is leakage of spinal fluid. And that can cause some issues. We have to be on the lookout for that after people have had surgery. But once people are out a couple of weeks and there are no issues, we tend not to see that resurfacing.
I want to ask about Hannah Jane, but I know you weren’t her original physician and you didn’t do her surgery. So just tell me what you know about Hannah’s case. We have lots of good information from her. But anything about the particular degree of which her malformation was bad, good, anything you would you can share.
Buchanan: Yeah. I think she had a pretty typical case of a younger person with Chiari and symptoms were quite disabling for her and preventing her from doing things in school work. And it was really affecting her quality of life. From a structural standpoint, I think it was a moderate case. It was definitely causing a lot of obstruction of cerebrospinal fluid flow around that area, which is again the reason people become so symptomatic with these. She had surgery and she had a pretty typical experience with surgery. It was a little rough going at first. And I my partner, Doctor Stephen, did her surgery, but I rounded on her in the hospital. And I remember seeing her. And it was a bit of a struggle at first, but she overcame that and she healed, and she did remarkably well following that brief period of worsening after surgery. It’s been a sustained relief and she’s been really, really good since.
How is she doing into the spectrum, and had she not gotten the surgery, safe to assume, it would have been as bad or worse?
Buchanan: Yeah. I think her case was something that I would’ve considered high risk for progression and worsening of symptoms. I- I don’t think she would have gotten to a situation that would have been an emergency and all of a sudden we needed to rush her into surgery. But I think it was clearly something that was going to progress symptomatically. And my- my concern would be that if this was left untreated, she would probably go on to develop a syrinx or something that’s more urgent.
What do you wish people knew about Chiari?
Buchanan: I wish there was a better way to identify these unique headaches as Chiari, so that people didn’t have five or 10 years of lack of a diagnosis. I wish that we had a better way of screening for it. It’s very easy for me to correlate the headache to Chiari as a specialist, but it’s, I think, a much harder job for the general practitioner to identify this unique variant. And I’m not saying it’s their role to overcome that challenge, but I wish we had something to identify them sooner.
Is there anything you want to add?
Buchanan: I’ll speak to the the unique condition here in within neurosurgery is Chiari is something that all neurosurgeons know of. And Chiari is something that all neurosurgeons at one point in their careers have treated. I think it’s like a lot of things in surgery and medicine, there an art to what we do. And one of the things that the color Chiari Clinic does well is that we routinely treat this. I would say in general, neurosurgical practice Chiari is seen and treated surgically. Maybe once or twice a year. And I think most of the time that’s going to go really well. But one of the advantages we have here is, doing this frequently on a week to week basis gives us more efficiency, and I think more predictable experience for patients. So I think there’s something to be said about, seeking out a specialized center for Chiari or other similar unique neurosurgical conditions. So I would say there are centers where Chiari is done really well. We are one of them. And I would encourage that if people have this diagnosis not to hesitate to reach out to a center like ours to try to get some advice.
I suspect that many, if not, most of your patients, that are struggling with this diagnosis and then find relief through surgical procedure are really inspiring, and they feel grateful. What’s it like to to bring healing to someone for years and years?
Buchanan: Oh my gosh. It’s incredibly rewarding. It really feels good to truly help someone’s. It is life changing for them. And and it’s sometimes hard for me to process the what that really means for them. I know it means a lot and it’s sometimes overwhelming.
END OF INTERVIEW
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