upset by NS indifference (Canada)

[kcjaybo]

Know I have a 12mm herniation and am quite lucky to not have drastic symptoms, but I do have health issues that may be related to CM (neck crackling + pain, raynaud's, hearing loss, fibromyalgia, back and joint pain, IBS, etc).  But I am 52 so of course some of these symptoms could be related to aging, but I've had most for some time. So at my request, my neuro agrees to send me to a NS for further testing (I thought a cine MRI, other spinal tests), but you could tell he was hesitant to do so "you don't have blinding headaches".  I had already had an MRI with contrast that showed no CSF blockage, thankfully, so guess this was enough for him to know. So I finally get to see NS (after being asked a zillion questions by a resident), then the NS proceeds to tell me me that I am asymptomatic and therefore he will not be sending me for further testing. I said that I only wanted to know the full state of my condition, whether I have a syrinx, etc - and that I am concerned not just my own future health, but that of my kids as I've heard there can be a genetic component to this. He was totally indifferent and both he and the resident were looking at me like I was a nuisance. I felt very embarrassed and certainly did not intend to waste the time of medical specialists.  Now I am feeling like a hypochondriac and don't know what to do in the way of next steps, if anything - so seeking the advice of others in this forum.  One important thing to note is that I live in Canada, and have to deal with the limitations of a public healthcare system.  Thanks in advance for any advice anyone has.

[selmaS]

Wonderful news!!!....do keep me posted and do not forget u need to rule out ALL related conditions, so a MRI of the thoracic and lumbar spine...rule out a syrinx, tethered cord, disk issues.....ICP, POTS, sleep apnea, ehlers-danlos....it is very important to rule these out b4 u consider surgery.

[kcjaybo]

Hi Selma, I am feeling very lucky right now.  One of the Canadian neurosurgeons on your list of knowledgeable CM docs got in touch regarding a referral request that went in to him months ago (before the other doc who turned me away, who was not on your list). Saw him yesterday, and he does think that many of my symptoms are CM1 related, not aging.  Next step is that he is going to send me for an MRI of my neck, also chest.  Finally, a physician that understands and will investigate matters further.  Thanks so much for your help and that of the CM community on here - without it I wouldn't have known where to turn, so really appreciate it!

[kcjaybo]

Thanks, Selma - insightful info, leading me to think that I need a 2nd opinion. Not sure if that can happen in this public healthcare/referral based system here, but I am going to try. It's just hard to believe that the brain specialists can be so nieve about this condition - worrisome, for sure!

[selmaS]

  Hi and welcome to the Chiari forum.

First it is not the length of the herniation but if there is a CSF obstruction....that said a reg MRI even with contrast can not show if there is an obstruction as it is a still pic...a CINE MRI is a moving pic...so it shows changes with BP etc....which may not be captured with a still pic.

The indifference with a NS is one of not knowing and an ego that will not allow him to acknowledge that fact....so frustrating...u  need a true Chiari specialist...that are rare not this condition....

We do have a list of Drs  In Canada for u to use to research who may be in ur area...and where u may have to travel to as many  of  us do not have  a Chiari specialist nearby. And we do have Canadian members here.


Many Drs do make us feel like we make up symptoms and we r just plain crazy...but there are too many of us with the same symptoms...so know u r not alone and u r not a hypochondriac....