I had an MRI done and there is a 5mm Chiari herniation. I have had many symptoms that have been attributed to other ailments. Finally someone figured it out. I guess what I would like to know are the symptoms going to get worse? I have numbness in my leg when walking sometimes. I have ringing and clicking in my ears. I have bad neck pain (Ihave 5 bulging or herniated discs). I have extensive spinal arthritis. I have twitching in my eyes. I also have some problems with incontinence. I really hate to think about such a dangerous surgery. Any thoughts or suggestions? Thanks so much.
I should also add that this is due to a car accident which shoved my spinal chord up into my head. I have many bars and screws in my leg, and my ankle has been fused in place. Lots of arthritis in my leg.
Thank you Mandy for the great info. I have a neuro surgeon I am currently seeing for my neck and back as I have several bulging and herniated discs. I recently fractured one in my upper back. I just wouldnt let him do that type of a surgery on me. The neurologist called for me to come to his office tomorrow to go over all my test results. I will see what they have to say. Pretty scary stuff but not quite as scary as that head on car wreck was. I will keep trying to find the best information I can so I can be somewhat educated on this. I have never even heard of it until now. Again thank you so much.
Thanks Mandy. My appt is this afternoon. Kind of nervous. I’m going to listen to what he has to say. He does not know I went to the hospital and picked up my MRI results. I learned a long time ago to do my own research. I do t know how he could say it isn’t when I have almost every one of the classic symptoms including the nystagmus. I think he will either tell me chiari or MS. I know I do not have MS. Unless there is something I don’t know. Keep your fingers crossed for me. I’m a fighter and I don’t give up easy. 
Praying for you DD !!
I will keep checking on you & am so sorry you have been through so much.
I totally agree with Mandy. You definitely need to see the best of the best. You have major symptoms already I hope they don't get worse but no one can tell you if they will.
If you need help finding a specialist please let us know.
Tracy Z.
I’ve been through the surgery, and for the most part I am a whole new person. I know it’s not like that for everyone, and I’m certainly finding out the hard way that the relief might not be permanent but I would do it over again. If you ever need to talk, regardless of whether you ever go for the surgery or not, I’ve found that this site is like a family. They (we) accept everyone with open arms and there’s always someone to help make this a little less scary, and a lot easier to manage. Good luck, and I hope that you feel better!
Hi this is Sharon and I was diagnosed in July of this year and my thoughts and Prayers are with you and all of us. And I too agree with the advice suggestions and comments you have received. Most of the doctors I have encountered downplay Chiari. I suffered for over 30 years before someone ordered an MRI and I was in a three car high impact car accident and while it does draw more pain to the head and neck as related to whiplash ...the reality of is... I had it all along. And if you think back...you may realize that you did too. Supposedly migraines, tension headaches, back or neck aches, vision changes, concentration issues and I could go on and on... even irregular heartbeats. I too have had difficulties finding doctors or NS that really do look at the person and the symptoms and how our lives are or can be impacted. Most of them seem to think that CM goes unnoticed until accidently discovered...tha'ts foolish. I believe it goes un noticed because its too easy to call our symptoms everything else. And this site is awesome! I have a new family that understands what I going thru!!!
Sharon could I ask you the size of your Chiari? My Dr. I think is also looking at MS as well.
I am in a similar place to you, only difference is my 5mm herniation has not given me a diagnosis. I have constant head pressure issues, not “pain” really but discomfort basically all day. Also when I move my eyes from left to right I see a large vertical dark line move across my field of vision. I have endured countless blood tests, cat scans, mri’s, X-rays, spinal taps, blood patches, eye exams, etc. nothing abnormal has been revealed aside from this 5mm ectopia. My neurologist basically says his opinion is that my symptoms are not caused by this and that only “badness” can come from that surgery. I just feel stuck right now, if I’m diagnosed and pursue surgery, I will probably lose my job and right now my symptoms are unpleasant but so far I am managing them. I have another appt with the neuro in December so I’m just waiting till then and see how I’m feeling. I have read enough to know that you should ABSOLUTELY pursue multiple opinions before deciding on the surgery.
My first MRI in July revealed 9mm herniation. I continued to get worse and could actually feel grinding in the back of my neck like rubbing and so my NS ordered a new MRI in August and my 9mm had increased to 13mm in less than 6 weeks.
DD said:
Sharon could I ask you the size of your Chiari? My Dr. I think is also looking at MS as well.
I am an RN and have been in medical field for over 20 years and trust me when i say everything you are describing is abnormal...we just learn to tolerate them. The issue I have with the medical world is the "Lets not fix it until it is causing major issues, well by that time there is mostly irreversable damage. And I dont know about everyone else but with me once the symptoms reared their ugly head...it started to go down hill really fast.
Kurt Stoddard said:
I am in a similar place to you, only difference is my 5mm herniation has not given me a diagnosis. I have constant head pressure issues, not "pain" really but discomfort basically all day. Also when I move my eyes from left to right I see a large vertical dark line move across my field of vision. I have endured countless blood tests, cat scans, mri's, X-rays, spinal taps, blood patches, eye exams, etc. nothing abnormal has been revealed aside from this 5mm ectopia. My neurologist basically says his opinion is that my symptoms are not caused by this and that only "badness" can come from that surgery. I just feel stuck right now, if I'm diagnosed and pursue surgery, I will probably lose my job and right now my symptoms are unpleasant but so far I am managing them. I have another appt with the neuro in December so I'm just waiting till then and see how I'm feeling. I have read enough to know that you should ABSOLUTELY pursue multiple opinions before deciding on the surgery.
Hi DD and welcome! Symptoms are different in everyone. I personally have a very slight herniation but i am currently trying to find another neurosurgeon for a second opinion. My neurologist says my headaches aren't caused by my Chiari, even though stretching kills me up there. the neurosurgeon she referred me to said there was no need for me to have an office visit with him. So... I am looking for a second opinion. I would suggest looking and asking around in here for people in your area and see who they recommend. that way you don't have to drive very far, hopefully. I have to honestly say that when i read your post, i had to cringe. With all my sports injuries it hurts whenever i read stuff like that. I hope you find someone who knows what they are doing with Chiari. Good luck and keep us posted! We all try to help one another inhere as best as we can. I can say one thing though. If you haven't already, try some Arnica Gel for the pain. I have a tube of it as well as a tube of Arnica Cream for when i work(cream doesn't soak in as fast and easier to clean off my hands at work). I was told about it in one of the rooms here and i love it. It doesn't take away all the pain but it makes it mild enough that its not as bothersome for me.
It was kind of disappointing. As everyone says the Dr did not want to dwell on Chiari. I have a neck MRI scheduled in a couple weeks as I have major disc problems as well.
I know but please dont stop...use this group as a tool to seek other providers to have further evaluations by someone that knows CM. We are sincerely Praying for you!
Sharon
Thank you so much Sharon!
I get the impression that docs feel the decompression surgeries carries enough risk that they feel they need to be very very sure Chiari is the problem. Even with a MRI showing a 5mm herniation. My Neurologist states his concern for a patient that thinks he has Chiari is psychiatric. It’s really frustrating, I feel like to get anywhere with this problem you have to demand the diagnosis for yourself.
Abby,
The problem I’ve had in gaining all this knowledge is when you rattle off certain terminology to a doctor they start considering hypochondriasis, but if you stay naive you are ill equipped to advocate for yourself. Aaaargh
I find some of my symptoms are much worse after working all day. I fell coming into the house today and I have had some bad dizzy spells and spells with pressure building up in my head until my ears pop. It is all very strange.
When I look at what you have written I had to think twice that it was not me.Mine is 6mm and like you I have identical symptoms along with arthritis and Loeys Dietz connective tissue disorder.I am yet to see the specialist here in Australia,Im told he is number two in the world for Chiari (professor Stoodley at Maquarie University Medical ).My neurologist that has referred me to him told me he is very conservative about surgery and I ,like you ,am concerned for the outcome.All I know is that if I keep deteriorating any further, that life would be to difficult for myself and my family without trying every alternative.I hope I have not been too negative,I think if theres a way,I will find it.Thank you for not making me feel alone with my Chiari.
Being so new to this site, I probably have put my remarks in the wrong place ,but I will leave them hoping they have value to the person to who I thought I was replying.I think Chiari is interfering with my sanity.Thanks again.