I'm 17 and I have a 6mm chiari 1, 10cm syringmyelia (T5-T7) and scoliosisin the lower back. I saw a neurosurgen and had a round of MRI's which is when I was diagnosed. I then had another lot of MRI's 6 months later and my herniation does not seem to have progressed but he said that the syrinx looked a little thicker but he blamed it on the MRI and how it would have been just a bit of a different angle so it appears bigger but I'm not convinced. I have 24/7 back pain along every inch of my spine with the headaches, but I have been getting dizzy a lot more and I'm constantly fatigued and can't sleep. I had all my symptoms before but in the last 3 months they have all gotten to the worst they have ever been. I currently have a 2 hour exam everyday for the next week which just makes the pain unbearable. Medication doesn't make a slight bit of difference to the pain and I just feel stuck and little bit tossed to the side by the doctors. I know people have it much worse, but I was wondering what other people's experiences were like, if and when you got new medication and/or surgeries and what I can do. Thank you for any help and I hope you are in a little less pain because you all deserve it. :)
*surgery
Mandy,
This is the first reply I have gotten so thank you, because its so nice to hear that people care and understand what we are all going through. My mum kind of knows the pain I'm in but she has so much to deal with, I feel like im just burdening her with it. My doctor didn't seem so knowlegable about Chiari and he kind of brushed over it all and said 'It's nothing to worry about' and to maybe get another MRI in two years. And, it doesnt matter who's symptoms are worse, we all have this problem and it affects us all, even if in strange different ways. I really do appreciate you replying and don't ever think of yourself as less important or anything like that just due to sympoms.
Emmaline (which is a beautiful name by the way),
Thanks for the reply first of all, I really appreciate it. Thats a really good way of weighing up surgery and I'll have to discuss it further with my parents and doctors. Is this Cine MRI something that I should push for? Im sorry to hear how bad your symptoms were but I'm also so very happy for you that you are doing so well. I'll have to track this other member down and a good chin wag haha. I'm happy to say after 8 hours of exams I only have 2 hours left so hopefully I can hang on in there!
Thanks again to both of you, these are just some of the first messages I've recieved from the other amazing people on this group. It's amazing to feel like you fit in and everyone knows exactly what you're going through. I wish for both of you that only good health comes your way and you always keep smiling.
With much appreciation,
Emily
Hi..
Welcome to the group..you sure have a lot on your plate!
I will have to chime in with Ms Emmaline as far as the CINE MRI..it is done pretty much the same way a regular MRI is done.however, it was my understanding, when I had mine done, that a radiologist is present at the time of the MRI..it is to check the flow of your cerebral spinal fluid.
In my case, the CINE came back as 'diminished flow'
When do you see your NS again? Does your NS have a P.A.(Physicians Assistant)? I ask you this because my NS had a P.A. who was in on my evaluation ...and let me tell you, Mike, the P.A. was worth his weight in gold! Since NS's aren't known for personally returning their patients phone calls...it is great when they have a P.A. who knows you and your case.
Let us know how you are doing!
Hi Lori,
I don't have another appointment booked with my NS, he said that I should have another MRI in two years and that was that. I'm in between putting faith in my doctor and trusting that hes right, or hearing about all these un-educated doctors and assuming hes not correct in his assessment. It's tricky to decide because I mean you go to doctors for answers and hes given me one, I just don't seem to 100% believe it. Thank you for the information, and if I do go back I will sure mention a CINE MRI.