So frustrated!

I had a discussion with my neurology Nurse at the VA today. While I continually rely on her advise and feel that she has been a huge blessing with my care and advocacy to this point, I was absolutely floored at what I was told. I basically asked if the VA was planning on referring me to a NS for an opinion. I was told that there was no evidense that warranted a NS appointment. She further went on to say that they consider decompression and a cerebral herniation to be an issue when the SIZE REACHES 8mm. Mine is "borderline" at around 4mm. REALLY? Nothing, and I mean nothing that I have read or seen for Chiari reffers to an 8mm minimum. We all know that the previous golden standard used to be 5mm, and I have found some articles that state the minimum is 3-5mm. We are also all aware of the new informaiton and research that states the size doesn't matter and it is more of a concern when CSF flow is blocked and/or there are problems with the spinal cord (can't recall what it is named now). Well we all know this, but appearently the neuro department at my local VA has no clue. During our sit down talk when I inquired about a referal to a NS I was asked if I my diasability is service connected and if it has anything to do with Chiari. I said I am 40% disabled from a service connected disability and listed what they approved disabilities for me are, which obviously don't specifically call out Chiari. When I asked why he inquired, he said it was unfortunate that my service connected disability wasn't Chiari since the VA would be willing to spend more money on my case if it was. With that being said and recently hearing of the obsurd 8mm statement, i almost want to believe that they just don't want to pay for the care. Oh well, somebody does so I guess it will just have to be me. Lol!

Considering my neuro Nurse is someone that I usually seek advice from, when she first told me all of this I was a bit confused. I think, in my unprofessional opinion, that I still warrant a visit to a NS and I am just going to have to try to find my own locally (in the Kansas City metro area hopefully) that has Chiari experience and get thier opinion. But then again what do I know, I am just the patient. Uhhg, sorry, it has been 6 hours since the conversation and I still feel the need to vent.

Hi Emmaline and thanks for the reply. It is not about being a vet or anything else. It is simply that I am a patient, plain and simple. The VA due to my service connected disabilities is tasked with all of my medical care, regardless if they are directly related to the disabilities or not. It just goes to show that when goverment spending is in play sometimes the patient lacks the necessary care to save a buck. I mean I could even understand if they quoted the old and misunderstood "5mm rule". But 8mm just confuses the heck out of me and for a lack of better words is absurd. Oh well, I will find a NS and make an appointment and see what they have to say. I am not hard pressed to have surgery or anything like that and still not convinced that diagnosing Chiari and having the surgery is the answer to all my prayers or problems for that matter. I am just looking for a qualified opinion from a NS who is experienced and up to date on Chiari and if it is said that surgery isn't the answer or Chiria isn't a factor then so be it. If surgery is recommended and will help then I am all for it. I am not that bad symptomatically but I continue to decline. I still work full time but here lately I wonder how many people at work think I am drunk since I am off balance and walking like I am three sheets to the wind some of the time. Oh well, so be it. Press on and head up! Thanks again and once I find a NS in the area I will definitely let ya know.


I am fuming!!!!!!!!!!!!!!!!!!!!!!! I cannot believe that you are not able to get a NS consult...

I am glad you have a great attitude and will press on and get your own NS. Bless you and your family..keep us posted.