Still trying to figure out what is going on with me. I was just diagnosed with a Chiari Malformation after spending a year getting treated for "migraines. Nothing even touched the pain I experience. I had to beg to see a neurologist - that was February 12th. Since then I have had an MRI and an MRA. My appointment with a neurosurgeon is March 26th. I will be having another MRI on my spine before then. I just turned 50. Is it uncommon for this to be detected so late in life?
I starting having migraines when I was 40.....didn't get diagnosed with chiari malformation until I was 56 in Sept. 2013.
It seems everyone has a hard time being diagnosed early.
Do you have a syrinx?
I was told I have a borderline Chiari after an MRI I had done for severe neck pain.That was six months ago and I`m sixty one.I had never heard of CMS until then,but after reading a lot of information on this site,I now know I`ve had symptoms all my life eg. headaches and unexplained pain.I also have been diagnosed with a connective tissue disorder that I have passed on to my daughter and her two girls.All this information has been in the space of a few years,but after a lifetime of pain and misdiagnoses.I know that technology has been the reason for the delay,but if I had known sooner I would have adjusted my life in a great many ways.Better late than never I guess.Anyway,the NS does not think my problems are Chiari related and will not consider surgery.Can you believe that?It took a long time to find out what was causing my problems,but now I know and I should be grateful for that.I think!
I am 51 and was diagnosed with Chiari last year after being mis-diagnosed with Meniere’s disease and Migraines for many years. While this seems to be very commonly diagnosed in children and teenagers, you will find people of all ages on this site. It is a very frustrating diagnosis to navigate. This website is great and so informative.
Thanks everyone. So will the decompression bring relief?
Unfortunately BukeyeJagFan having a decompression doesn't always bring relief. Every NS is pretty careful to not promise this as a cure, but hopefully a way to reduce symptoms.
In my case I did get immediate relief of the constant skull based headaches (which is a huge relief), but at 5 months out of surgery, I still have dizziness, vertigo and a very stiff, sore neck (had all of these issues beforehand). Also the area around my scar is very numb and sore and I have developed a complication called a pseudomeningocele (a leak in a the patch that the put on your brain that cause an accumulation of fluid). Everyone says to give it a full year of recovery to see how much the surgery has really helped. I still have 7 months go.
The best advice I can give is to seriously consider all of the options and get as many opinions as you need before deciding to move forward. In my case, after 12 yrs. of living miserably, I was to the point that I had no choice. I had to quit my job 2 yrs. ago and was virtually becoming a hermit. I am hoping this changes my quality of life for the better. Time will tell.
Good luck as you move forward.
Buckeye,I’m sorry you have been suffering. I’m not sure that a diagnosis later in life is uncommon. From how I understand it (don’t take this as gospel) a person can have the malformation with no symptoms - ever. Symptoms just show up for some people, some people endure a head trauma or whiplash injury that starts their symptoms. Every Chiari patient is different in the type of symptoms, pain levels, and triggers.
I am so glad you are had all these Mris - that’s great! You’ll need those to take to a neurosurgeon. A neurologist can help you with pain meds or ordering tests, but they can’t treat the Chiari - if you want to consider surgery as an option please take the time to find a true Chiari specialist.
There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.
Vitamin d deficiency
Magnesium deficiency
Ehlers Danlos syndrome- can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done, but continue to have the same symptoms or worsening symptoms- a second surgery will be required.
Dysautonomia
Tethered cord syndrome
I am glad you found us,
Jenn
Buckeye, I was diagnosed 1/3/14 at the age of 55. I was asymptomatic until I had two chiropractic adjustments in my neck and upper back in May 2013. The symptoms started thereafter and after hearing the cracking crunch sounds in my neck during those adjustments, I do believe this was the trigger for me that started the ball rolling on these crazy symptoms. Good luck with your neurosurgeon visit.
Just getting relief from the headaches would be a blessing. Had an MRI done on my neck today - I assume that was to look for a syrinx. Meeting with NS on the 26th. Thank you so much - the info I am getting is definitely helping me with this.
I just asked some questions on my MRI's. The Cline was yesterday and they do not have those results yet. I did learn that the brain herniation is 1.1 centimeter - and I did confirm he meant centimeter.