When we saw our NS back in April, we've had a lot more time to digest what he had to say.
He told us that her mri showed no syrinx and that her symptoms were quite mild, and they would have to be more sever to consider surgery and the risks associated with it. He referred us to a NR, but where we are the wait time will likely be another 6 months or greater.
We didn't ask about further diagnostics (like a CINE mri) because we didn't know what it was at the time.
The symptoms that she's experiencing that we're concerned about:
1) frequently dizzy and off balance (although when we saw him, she was fine and didn't have any balance issues at that particular moment :S),
2) headaches that are usually short (less than a few minutes) but frequent. They can seemingly come out of the blue or can be triggered by getting up too fast, or looking to the side.
3) tunnel vision... much less common than the headaches, but tends to have the same triggers. Last night she said she had gotten up to close a window, but got up too fast. Got a brutal headache and had her vision go "tunnel" then pretty much black. She found her way back to bed and was feeling better after a few minutes, but the experience scared her. (but she didn't tell me anything until the morning!!! :-<)
She currently isn't on any drugs aside from ibuprofen that she takes for some of the headaches that persist.
My question, should we go back to him requesting a CINE mri so we have a more complete picture of what's going on? Or should we stick with the current wait and see approach and talk to our PCP and see if we can better manage some of the symptoms?
All opinions (even ones we might not want to hear) are appreciated.
For a long time my son who did have a syrinx and many other conditions, we did the wait and see approach. When my sons symptoms changed so did his MRI. His syrinx had grown and also found a tethered spine. Are they going to do a MRI In six months?
I would definitely ask for a Cine MRI. If you don't have that you don't have the whole picture. I had numerous MRI's over the years and not until I switched doctors to one that knew all about Chiari (NS) did I find out what was wrong with me. I was decompressed in 2001 and my CSF flow is blocked again. If you also have the opportunity to find a Chiari specialist I would do that too. It's a revelation when you finally speak to an expert. Just my 2 cents!
I haven't heard of anyone else having the "tunnel" thing happen to them! It is terribly scary... That was what prompted me to go to the urgent care and got the ball rolling on all of this.
Not much else to say, just that I can sympathize. I'm in the same boat. I waited 3 weeks to speak with the neurosurgeon, got fed up waiting, and called them only to be told they don't want to see me YET. They want me to see a neurologist FIRST and then maybe they'll see me. Still haven't been able to see a neurologist... Waiting is miserable! I empathize 100%.
My Neurologist said the same thing basically a wait and see kind of attitude. The feeling that I have been getting about these NL and NS is that unless they are experts they think its nothing. I was told I had a mild CM. and that "oh that's nothing". I asked what do I do now and was told whatever makes me emotionally comfortable. Smacking him in the head for that comment would have made me feel REALLY emotionally comfortable.
I am "non symtomatic". Funny but I do believe I went to DR. because of these symptoms.
I went to the doctor FOR a REASON. One being the loss of vision accompanied by a headache, not sure which happened first( I always have a headache) The first time my lower vision blacked out then it all went fuzzy like TV static. The second time I had kind of tunnel vision black out. Freaked me out.
YOU have to be your own( and your daughters) advocate. If you want to wait wait,
If you want to get a second opinion(or third like I am doing) go for it. No harm in asking why your Dr. did not feel the need to do a CINE MRI, and is it recommended? I didn't know about it either and will be asking that myself tomorrow.