So, I was diagnosed with CM1 over a year ago. I’ve had all the typical symptoms. I saw a ND who completely dismissed me, I MO, but she did do a cine mri that showed normal flow. I was very unhappy with the way the ns treated me. Last Thursday, I saw another ns (the first has a clinical interest in cm and this second one was recommended by name by my nl (. This guy did a much more thorough exam, elicited clonus and a positive hoffman sign, both of which point to upper motor neuron damage. He recommended decompression with dura plastic, no foraminotomy. I told him my flow study was normal and he said he doesn’t pay attention to that.
Everything I’ve read has said thst blocked flow is the cause of symptoms and that normal flow indicates a non-surgical candidate. This guy has done 20 decompression over 10 years, so that makes me a little nervous, but I personally work with two doctors who’ve said he’s very very good and they’d trust him. He was also recommended by name by my nl. does anyone know anything about this whole deal with normal flow and no surgery???
If I'm not confusing it with something else, then cine MRI is just a fancy way of getting no reliable info and Chiari specialists don't take it very seriously anymore. I've both read it and heard it on CSF's lectures. Anyone, please correct me if I'm thinking of another test. But I'm pretty sure it's the cine MRI.
The sole purpose of the decompression is to restiore a normal csf flow, as far as I know.
From what I was explained by the neurosurgeon every case of CM is different. Even when all studies point to certain specifics that does not mean that the NS completely discards that option, even when testing comes back negative. The reason why is because each body is different. The structure is the same yet the way the your body functions is different than mine. I would honestly follow Doctors recommendations, plus you have the trust of those whom know him professionally and can vouch for his work. Good Luck!!
Fugu said:
If I'm not confusing it with something else, then cine MRI is just a fancy way of getting no reliable info and Chiari specialists don't take it very seriously anymore. I've both read it and heard it on CSF's lectures. Anyone, please correct me if I'm thinking of another test. But I'm pretty sure it's the cine MRI.
The sole purpose of the decompression is to restiore a normal csf flow, as far as I know.
You're correct that the cine MRI is a flow study. You're also correct in that the purpose of decompression is to restore normal flow... that's where I'm confused. My flow study was normal according to the first NS. Am I reading correctly that the jury is leaning toward cine MRI not being useful?
LiliK said:
From what I was explained by the neurosurgeon every case of CM is different. Even when all studies point to certain specifics that does not mean that the NS completely discards that option, even when testing comes back negative. The reason why is because each body is different. The structure is the same yet the way the your body functions is different than mine. I would honestly follow Doctors recommendations, plus you have the trust of those whom know him professionally and can vouch for his work. Good Luck!!
Thank you both for your input. I did go ahead and schedule. I don't have an exact date yet, but I know it will be either the 2nd or 3rd week of May.
Cine MRIs are but one of many imaging studies used by some neurosurgeons.
So, look at the literature.
One of the early studies(2006) from Duke, quoted at the Conquer Chiari web site, indicated that normal flow increased surgical failure rate 4.8x. https://www.conquerchiari.org/articles/surgery/outcomes%20&%20predictors/cine-mri-predict-surgical-outcome.html
Same neurosurgeon, moved to Johns Hopkins, further quantified outcomes with cine MRI in 2008. http://www.ncbi.nlm.nih.gov/pubmed/18205006
So, normal CSF flow on cine MRI is clearly related to increased surgical failure rate. According to the 2008 study, the surgical success rate drops from 93% to 60% moving from the complete obstruction to the normal flow categories.
Now, to further muddy the waters, many of us were hoping that cine MRI would help us distinguish in whom we need to perform duraplasty(open the dura) and who could just have a bony decompression. Intra-operative MRI began to be used and then the UVA study came out. http://www.ncbi.nlm.nih.gov/pubmed/25699415 this study showed that flow was more affected by head position than decompression(yes, your neck position mattered more than whether a piece of your skull had been removed).
What does all this mean?
We are still learning. Chiari studies are in their infancy. No single study will give you all the answers.
There is a reason we call it the art of medicine rather than the science of medicine. We'd like to get 100% answers. We are not yet there with Chiari.
Therefore, talk to your neurosurgeon and make a decision based on experience.
Are your symptoms bad enough to warrant surgery that may have an at least 60% success rate(sure, you would prefer 90% but that is not what your studies and the literature would suggest at this time...and truthfully, that 93% successful outcome from the 2008 study is one of the best surgical outcomes described, better than any I ever quote any patient)?
I hope these thoughts were of some assistance.
Ok, I’ve read those studies before, which is why I mentioned my normal flow to the neurosurgeon. My question now is how accurate are cine flow mris? I trust their physician. He clearly elicited upper motor neuron signs and said he saw cervical compression on the mri and is confident this is the right direction.
I was thinking about the compression issue. I think the decompression not only gives more space for the fluid to flow, but also for the brain, so it's not pressing against the places it shouldn't.
I saw a NS, he was sure my back pain is caused by the tonsil pressing on the brainstem, but he said, he would only do the surgery if the cine MRI shows disrupted flow. I'm confused too. haha But I'll do the cine MRI and go from there.
It looks like your dr has considered a lot before deciding in favor of the surgery. I'd trust him.