Ive just ignored it?

I got diagnosed back into 2011 with a 6mm chiari. I have been told by the doctor here in the UK that most people have a chiari this size and lead normal lives hence the ignoring it? how many of you have done this has it kept at bay or has it eventually caused you problems at the min I have been diagnosed with RA and Carpul tunnel and I go back to see a doctor for a 2nd carpul tunnel op later this month are they connect with the Chiari

I kept getting told that the head aches i get and the neck pain the numbness in my feet is because i dont exercise enough but when i do exercise Im in agony with severe headache more or less straight away I would say im happy not to have an op! or maybe scared not thats been offered I had a clear csf

I was diagnosed in 2011 as I have been having chronic right side arm & shoulder pain since an operation for Thoracic Outlet Syndrome in December 2008. After exhausting all other meds, tests etc...I was sent for full CT & MRI/MRA & CFS studies/tests and that is when they found it. NS says surgery could help, NL says 50/50 chance... I am in the UK as well. So currently I am not thinking about it. Well that isn't strictly true. But I am continuing with the treating of the TOS neuropathic pain route for now, having just had my second lidocaine infusion.


My CM wasn't ignored. I was diagnosed too late and almost became a quadripledgic. I tell you this because ignoring CM has dire consequences. As I look back, my only pre surgical symptoms were: A sore neck(I thought I was working too hard), Headaches(written off because my mother also had migraines) & balance problems(which I had always bumped into stuff, My Grandmother called me Grace). I never thought I could be sick. I played all sports and ran & swam daily. I had previous Cranial Nerve surgery for ear pain. I went back to the NS and told him my neck was hurting , but everything else was fine. He did a Xray & a Cervical MRI and called me while driving on the hwy & told me to pull over. My spinal fluid was what we later determined to be 98% blocked & my veterbrae were literally being pushed out of my spinal column from the CSF blockage. My surgery was 16 hours long. They preformed a Chiari Decompression surgery with Crainectomy & Laminectomies on C1-C6. The nerves in my neck and back of my head was held open for 16 hours. I will always be in constant pain. The nerves were stretched to long. I have a bent optic nerve. I had a Spinal Fluid leak that turned into chemical meningitis & had motion sickness for 6 months, because my Mastoid Bone was broke, I fell & got a concussion & had blinding headaches & have broken my ankles 4 times in a year & 1/2, because I can't look down when I walk. My whole life was destroyed. This is what happens when you wait too long to be treated. Please don't let this happen to you. Your Cranial Nerves control your whole bodily functions. Fluxuations in spinal fluid could be causing your Carpal Tunnel. I have talked to many Chiarians that has autoimmune diseases. 30% of the population has CM, but only 17% of the 30 % has sympyoms & if you are of Irish decent that number increases. Carpal Tunnal pain is reflective pain. You can operate on the side causing you the worst pain and you probably won't have to have surgery on both wrists. I learned that when I had Microvascular Decompression surgery for ice pick stabbing ear pain (that I lived with for four years & caused by undiagnosed CM & Spina Bifida Occulta) that was bilateral. I would advise you to find another dr. with Chiari experience. I know i sound like a mean person, but I don't want you or anyone to suffer the way I have and do daily.

Tracy Z.

Thank you Tracy, Believe me i dont think your being mean at all. I dont sit here and totally block it out the doc here just keep telling me there is nothing wrong with me. I just dont know which way to turn so have just let time slip by but the thought of Chiari never dissappear. I really hope i stay this side of surgery just i dont seam to get any where and after 5 years of being told theres nothing wrong then what can i do??

It is very hard to find Dr's that have Chiari experience. I don't understand how your health system totally works. Can you request to be sent to a Neurosurgeon or Neurologist? You are your health advocate. You are totally correct Chiari doesn't disappear. If you feel like you are having symptoms you need to talk your doctor into ordering a current MRI of your Brain & Cervical Spine with & without contrast. Once the results come back he can't keep saying it's nothing. It's worth a try. I worked at the biggest Health Insurer in the US. It breaks my heart you can't just make an appt and go to any Specialist you need to see. Please keep in touch with me & let me know how you are doing. I am so sorry you are going through this. It's horrible to have to prove to a Dr. you are sick.

My problems have been there for years but I was just told it was wear and tear trapped nerves, carpul tunnel, arthritis. Here doctors are not interested we dont pay them so really they dont care they prefer to have severe cases I was told that a 6mm is normal it really wont cause me any problems a all. Nor the fact I had two car accidents If i start to exercize im doubled up with severe head pain My neck is constant sore and feels stiff. Oh well I guess I should try again see if I can have a third opininon lol How are your sysmptoms now have they settled.