Take your time. Especially if you’re new to this diagnosis. An MRI will determine obviously if you have Chiari where the tonsil hangs out of the skull etc. Also what is important to determine why you’re getting pressure, headaches or your Chiari has become symptomatic is a Cine (video) MRI will show whether or not your spinal fluid is being blocked in that area of the Chiari. This is important to know and important for your neurosurgeon to determine proper treatment for you. Please feel free to email me if you have any other questions.
My MRI only showed a 3mm herniation. When my NS did my decompression she said it was closer to 10 or 12mm. She said my MRI did not show nearly the severity of it and said it was very positional for me. So just an example where the MRI doesn’t always show the whole picture. I will only let them do another LP on me if it is a matter of life or death. I blame them for my severe decline prior to surgery.
And I’m not too versed on this but I’ve read the retroflexed odontoid can cause severe symptoms on it own. I’d look into that as well. Again like I said I’m just going off of an article I read a while ago.
I am in WV as well and I had a terrible time finding a NL who took Chiari seriously. When my local NL told me Chiari had no symptoms my doctor referred me to WVU. The NL there was even worse if that's even possible. Everything he told me about Chiari was easily disproved using his own sources. He refused to even refer me to a NS and said that any NS who operates on a Chiari patient should lose his license. Seriously!!!! So I eventually got my regular doctor to refer me to UVA and then I sent my MRI's to the Mayfield Chiari Center. Both UVA and Mayfield agreed that I could benefit from surgery and that my symptoms were definitely Chiari related. I decided to go with Dr. Ringer at Mayfield and I'm so glad I did! I'm almost 2 years post-op and I'm very glad I pursued this and didn't listen to the NL!
Anglyn so happy you could help!!
I just got one and wrote you a novel in return! lol :)
Anglyn,I know what you have gone through,your journey sounds fimilar.There was no help for me that addressed my chiari,no one knew anything about it.It took 28yrs.to get a diagnosis and our local Neros still are reluctant to believe the truth even though other specialists that diagnose correctly.In my case herniation was slight I was almost aChiari0.I was so blessed to have found Dr.Rosner without him I may still be suffering like I had for so long.My symptoms are about 70% improved most of the time, I thank God everyday for a specialist that knew how to diagnose my chiari.If only those Docs that think they know would truly learn from NS that are helping hard to diagnose people.I tell everybody it is a must to find a chiari SPECIALIST.!!!I know that can be a hard thing for some.
I definitely understand how you feel Rebecca. Some of the neurosurgeons I've seen want me to do a spinal tap to look for MS even though they admit that I have chiari malformation. They still think the symptoms are coming from MS though. I've known people with MS and though some of my symptoms are like theirs, there are some that are not. MS looks so scary. I don't want MS or chiari, but I have chiari and I don't want to make it worse by getting a spinal tap for something that may or may not be there. Chiari has already caused me scoliosis, syingomyelia, problems with my sciatica, and cervical kyphosis (abnormal curvature of the neck part of the spine). I don't want to turn around and have a spinal tap that causes even more problems. Though the diagnosis of MS is scary, I do want to know if I have it because the sooner you start treatment (there is no cure) the better. We should pray about it because we really can't just give up. That's not an option. Hang in there dear. I will be praying for you.
Rebecca said:
Ackk.. I don't know what to do. I don't want to have either Chiari or MS. I don't want to fight with doctors and try to prove my case for why I should have this test and why I shouldn't have that test. Its enough to make me want to give up and go cry under a rock. I'm feeling very discouraged today.