NOTE: this is strictly my opinion/experience and not meant to change anyone's course of treatment! Please use your best judgement in your own care!
I see so many times written here where everyone is waiting for a CINE mri to prove they have Chiari.and their symptoms are all chiari related. and I need to say this....I'm not saying this is right or wrong but i want to give another point of view.
for me personally. I had chiari I had a multi array of symptoms- that were really life altering-
My Cine MRI showed "minimal to NO blockage" and i was told by NL's/NS's that I DO NOT have CHiari because I DO NOT have blockage, and that the symptoms can all be treated and to that I SAY BULL PUCKIES! If your cine MRI comes back minimal to NO restriction go find yourself a NS that is a Chiari xpert not just some yahoo who decided to add Chiari to their list of treatable conditions they treat.(At the time i didnt know any better and I played their game and let them "treat" the symptoms for awhile-well until i just couldnt function daily anymore,which was really too long)
after i had my decompression surgery is when i was told i also have cervical stenosis and i was told that my neck will get worse, this is was never talked about by ANY of my MRI's or CT's that were done by anyone!.
here is my theory: for those of us who have been born with chiari and have not been diagnosed with it until later in life- we as adults or even teens our bodies have learned to "work" with the way we are put together! and not everything has to work like the text books say they have to work! so just because the according to a text book discription of something your body is suppose to be and your body is the opposite fear not.
remember: YOU ARE AN INDIVIDUAL and your body has Adapted to work with how you are put together!
I’m worried about this very thing. I’ve been blown off because my Chiari and Syrinx aren’t big enough for the doctors to consider it a problem. I’m getting worse every day. My hours were cut at work because I’m struggling so bad. My boss told me that I need to get on Disability. So, I’m going to see Dr. EEllenbogen, who is supposed to be a Chiari specialist. After looking at my records, he requested that I get a CINE MRI before driving up to Seattle to see him. I’m worried that he’s going to say that it’s not bad enough and blow be off like the others did. My pain/symptoms are affecting every aspect of my life. Isn’t that bad ENOUGH?!
When you go into to see him, make it very clear to him that your life has changed and is continueing to change on a daily basis in a negative way, What is your hernation?
My NS (who done my decomp) told me its not only the size of the hernation that matters it is the # of symptoms and how they are affecting your life and for me they were life chaning.
Thank you Lisa W:) I will definitely take your advice. I don’t know what my herniation is. I looked through my records from my last NS and I couldn’t find that info. He just said I have a very small Chiari. I found an old back MRI report from 2 years ago that said it’s 4mm and not classified as Chiari. So, I don’t know if the brain MRI had different findings. It also said that I had cervical stenosis and slight kephosis.
Crystal my herniation was originally measured at 5mm by the time i seen specialist it was measured at 7mm, i absolutely HATE it when they say not classified as one- that to me means they are measuring by the book- and technically know NOTHING about chiari (the person who read the MRI or who told you about the classification).
Sounds like you have a double whammy with the cervical stenosis and chiari-I do hope he will treat both of your issues at the same time, because the cervical stenosis causes chiari like symptoms left untreated(which is where i am- right now) as for the kephosis- iam not sure how your NS would treat that I am very surious about this as i have not heard any other Chiarian who has this even sliight- it may be a technical readers error too- I;d just wait and see what the new NS says....
When is your apt with them? and for the new MRI?
i didnt find out for sure i have cervical stenosis until after my decompression,- i shouldnt say that! chiari doc said i have cervical stenosis prior to decomp- but confirmed his findings after my decomp- What surprised me was HE was the ONLY one to say i have cervical stenosis- and continued to be the ONLY one to say that until i found a new Neurologist here who knows chiari and hydrocephalus and he looked at scans (all of them) and yes Yes mam you do have cervical stenosis!! and left me wondering WHY no one else ever seen it!! of all the MRI's/CT's.....baffled...
All those techs and drs that read our MRIs and scans have different thoughts on all of this I believe. That's why your doctor should always read your scan himself rather than rely on someone else's report. Take care ladies and keep us all posted on how you are doing!
Yeah…After reading that NS notes, I’m confident that my decision to not go back to him was the right one. I don’t have an appointment with Dr. Ellenbogen yet. I need to get a CINE MRI first. My Chiropractor said he would be happy to give me a referral, but he doesn’t know where to send me for that. So, I just need to find out where I need to go and he’ll give me the referral. He has been my only doctor that really listens to me. He is also the only one taking my pain/symptoms seriously. He diagnosed the kephosis on his x-rays taken about a year after my car accident. The MRI later confirmed this. He goes out of his way to try and help me and/or find other doctors to help me. I don’t know what I would do without his support. I’ll keep ya posted on my upcoming appointments.