Anyone had a CINE mri come back with no flow blockage? My NS office just came back and they told me this. They confirmed the Chiari and herniation, but said no flow blockage. Where does this leave me???/ I’m so frustrated and list. I thought it would be ‘an answer’… I know it’s a good thing. But for me, this was an answer and validation.
They referred me to a NL, a highly recommended one. it takes 2months to get in. So I wait still… scared everyday how bad the pain will be…
I’ve been told it was migraine for so long before they found the chiari…
Anyone ever heard of a CINE coming back this way and it still be chiari??
Sorry to go on and on, I’m just shocked and lost.
Kathleen.
Dazzle51… So, u do show normal flow?? does ur doc think that ur pain is chiari? I’m asking bc from my research and what I’ve been told, the blockage is what causes the pain…?? That’s also why the NS is sending me to the NL, cuz they say it’s not the chiari causing the headaches etc… Thanks for ur response. I’m just trying to make sense of everything.
Kathleen,
You should get a copy of the study. They should be able to give it to you on disc. You need to look at all your MRI films and tests. I wish I had asked years ago. I had a Cine and mine is blocked but yours could be slowed down too. The cerebral spinal fluid going up looks white and coming down looks black. It should go up and wash over your brain come down and then start all over again with your heart beat. My new doctor ordered the Cine after begging my last doctor for it for 5 years and she showed me my regular MRI. It took my breath away. I have been told everything was "normal" for years and when she showed me my MRI I had a huge egg size sack of cerebral fluid stuck at the base of my brain where my surgery was and my patch was loose. Moral of story....read and look at all tests yourself. I didn't think to ask and just took my doctors opinion as fact. They are human and sometimes have opinions and agends seperate from what is the best for us. It may be what they say but you never know. Also Chiari causes pressure on your brain and your brain stem which is the biggest nerve bundle in your body. It's very complicated and one finding doesn't spell out the whole picture. It's a serious condition that doctors need to take seriously and if they don't find another doctor that will. I wasted too many years of my life and my kids lives staying with a doctor who didn't believe me because I was weak and scared to find another doctor. Good luck I will pray for you.........Wendy
Kathleen,
My advise wasn't for you to become and expert in reading MRI's and going it alone. I just wanted you to know that different doctors will read results different ways and recomend or not recomend surgery. The more you know about your condition, anatomy and your test results the better you will be. My advise was to get another opinion and to know what you are looking at so you can advocate for yourself. My experience of one doctor telling me I was fine when I wasn't is not unique and is repeated over and over again by many on this forum. I will pray you find another doctor and the answers and relief you deserve.....Wendy
I had my CINE come back "normal" "no blockage" and was sent to a NL from a NS who told me "sure you have Chiari, come back to me when you can no longer breathe"..(WTH)....so to the NL i went W/pain confusion and all the lovely chiariness---and i did what he wanted me to do. how ever he and his" bag of tricks" werent really helping anything at all..and he kept saying "All you are going through it cant be from the chiari", and " i dont know what else to do" and " i wouldnt be offended if you went and got another opinion" after hearing him say for the third time- i was on the search for a NS CHIARI SPECIALIST! I was done playing patty cake with the NL. Found one in Wi and I sent in the cd's heard back from them and made my appointment with them.
as i was told its not always the blockage that matters, nor is it the size of the herniation, it is the number of symptoms and how they are life altering to you!! so might i suggest if the NL is unable to treat your symptoms find yourself a NS who specializes in Chiari
From my understanding and experience, CineMRI's are not used to diagnose the severity of a person's CM. There has been a lot of great advice already. I just want to say that I know how it feels to wait around and then be disappointed by a doctor so unless this "highly recommended" NL is a Chiari specialist, I wouldn't waste my time.
Like Lisa W said, you need to find a NS that specializes in Chiari Malformation. This is simply because awareness among doctors about the details of CM and related conditions sucks right now. There are many tests that a specialist will advise based on your symptoms and MRI's... tests that involve breathing, your heart, swallowing, and probably others, but that was all it took for me. My swallow test and MRI were enough to convince my NS and other doctors. I have a really long list of symptoms, and I mean swallowing difficulties was on there but definitely not in my top 5.
You may have other issues rather than just herniated tonsils so it is very much worth your while to find the right NS that specializes in Chiari. Obviously where you live and where the right doctor lives can be an issue but don't be afraid to look around, you may need to travel. I am fortunate enough to live only a couple hours from The Chiari Institute in NY and I highly recommend them. Much love and luck to you <3 be strong! :)
Again, I just want to say thank u to all of u. It’s comforting to be able to come here in a world where no one understands. 
Also, the NL office called today and originally said Aug 8th, then called back and moved me up to June 22nd. I’m very eager to see her. and I will be (politely) demanding that she take her time with me and also see if she can determine which of the 2 types I have ie: cranial settling etc. I’m also looking into a Gastro doctor bc so many symptoms coincide with stomach issues.
If anyone would like to shed some light on that connection, please do.
Thanks again
Kathleen
I will echo what a lot of people have said, and add that I actually found a physical therapist who was very knowledgable and understanding about chiari. I gave him the results of my flow study MRI, which were the same as yours, and I was shocked, especially since I have a syrinx. I asked him if I have no blockage how can I have so much pain, he said it's not just blocked CSF that causes pain, it's the chiari itself and the increased pressure it causes, the fact that there is so much that is trying to happen up there in such a small, compressed space. Agreed with other posters, do try to find someone in the medical field who specializes in chiari, they will understand that no CSF blockage doesn't mean you are pain free or not needing care! Best of luck to you!