Chiari Online Support Group

Are there any Canadians here that have experience getting a second opinion in the US?


#1

I was hospitalized last January and diagnosed by a radiologist with Chiari Malformation and a small syrinx. However, in June, a local neurosurgeon (supposedly a Chiari expert) “undiagnosed” me and said it wasn’t what was causing my symptoms. I saw my neurologist in August and he ordered another MRI. I had my MRI earlier this month and follow-up with the neurologist on Monday.

The MRI was unremarkable except for the fact that the radiologist (different one) noted the Chiari Malformation and widening of the spinal canal (potential syrinx). My neurologist can find no neurological reasons for my symptoms so has discharged me from his service.

I was recently diagnosed with POTS which could explain some of my symptoms. But in the back of my mind, I still wonder if it’s the herniation causing the headaches and other neurological symptoms.

So I’m considering paying to go to the US for a second opinion as no one will refer me for a second opinion here in Canada.

Are there any Canadians that have gone down to the states for a second opinion? If so what was your experience like?


#2

My husband had looked into consulting in the States prior to my seeing a neurosurgeon in Calgary and subsequent surgery. I cannot remember the price, but it was daunting with travel and accommodations for at least a week. Also, just because a US neurosurgeon recommends surgery does not mean that a surgeon in Canada is obliged to operate. I do remember the USA price tag of more than $100, 000 for the surgery itself. Neither the federal nor the provincial government will subsidize any of that cost.

To clear up your understanding of your MRI findings it may be worthwhile to discuss the impact of the cerebellum in the foramen magnum/spinal canal in the sagittal plane AND the horizontal plane. Understand what those two terms are, as they are both used in determining if surgery is an option. You may have burnt too many bridges with your current medical people. Perhaps your family doctor can show you the pictures in his office or you could potentially make an appointment with a radiologist.

It seems that with your posts, you are craving a diagnosis and a neat solution. You are not alone in that desire. However, it is important to realize that surgery and medications are not the only fixes to medical problems. I wish that I had known the other the treatments options I know of now so that I could have done them when I first had symptoms!

There are diets and functional medicine doctors (present in Calgary!) to assist with auto-immune and inflammation symptoms. There is a handy assessment tool that can put one in or out of that camp. It is amazing how a diet change can help symptoms if inflammation is playing a role in presentation.

There are amazing optometrists who specialize in in vision therapy - in Calgary.

There are amazing physical therapists at Tower Physio who deal with POTS syndrome and headaches. Headaches have a variety of potential sources. Also, great new stuff has emerged with vestibular, midline, oculomotor, neurodynamics, and proprioception training.

I understand that your MRI is not normal. Perhaps you will need a decompression surgery in the future. In the mean time, there are wonderful treatments available that, when properly assessed, can make life-altering changes in symptoms. Please do not resign yourself to surgery and medication as the end all and be all to your health concerns.


#3

I’m not craving a diagnosis or looking for a “neat” solution and I definitely don’t want brain surgery. It’s been months since I’ve been active here and a lot has happened since my initial posts.

It was actually my GP’s idea to post this question on the forum. He said it was worth seeing if anyone had experience. He’s had other patients with different conditions seek out advice from doctors South of the border due to the limitations of the Canadian health care system.

I encourage you to remember what it was like when you were sick and not yet diagnosed with Chiari. And what it was like before your surgery and before you became an “expert” in Chiari and other therapies and treatments. I imagine you were trying to seek out as much information as you could to determine what was happening. And once you knew what was wrong, you were trying to find a solution…point and case your husband looking at treatment options in the US. How is him doing that research any different from me posting this post? Trying to get someone’s personal experience with something specific is part of that research process.

In addition to this post, I’m doing other research but my GP and I thought it would be beneficial to see if there were any first person experiences. That’s all I was looking for…not to be judged or told about other types of treatments/therapies (some of which I’m currently doing but didn’t feel it was relevant to what I had intended to just be background information to the question I posed).

I also haven’t burned a single bridge (not even sure how you jumped to that conclusion) with any doctor or health care provider. My neurologist is discharging me from his service but will see me again if the need arises without it having to be triaged through central neurology again. The neurosurgeon I saw gave his opinion and that was that. If anything, I’ve been too complacent and haven’t advocated for myself enough.

What you’ve read here is just a small part of my story. Some of your response I could see had good intentions but other parts were rude. I’d hope in the future you’d be a bit more careful with the words you chose and not be so judgemental. This should be a place where people come for support and to have their questions answered and not fear a response that accuses one of “craving a diagnosis” and wanting a “neat” solution.


#4

I apologize for not being clear with my intent. Hope that you find the answers that you are looking for.