Hi, I have Chiari Malformation that has been overlooked for over 20 years :-(

I believe my symptoms started in 1992 after I suffered a traumatic loss. I had anxiety symptoms and they diagnosed me with anxiety and a heart condition, mitro valve prolapse. Years later they did an ultrasound and said I did not have it. In 1994 & 2009 I was rear ended and suffered whiplash and back pain. I have had numerous symptoms over the years and after trying to deal with doctors just thinking it was a mental problem or a pill problem I decided to just deal with it on my own. Figured everything was allergy or car accident related and that eventually I would loose my mind & be crippled & there was nothing I could do to stop it. On 8/2/15 I developed a cramp in my neck and started having muscle spasms that after a few days started radiating down my arm. I found a primary & made an appointment. I gathered all my MRI reports and labs and when doing so I saw on my 2006 cervical it said Chiari Type 1 Malformation. I looked it up and recognized the symptoms and things started to make sense. So I got a referral from the doctor and got a brain & cervical MRI. Brain MRI said no then cervical said yes with 7mm herniation. I am very blessed to have right away found an amazing specialist, Dr. Trumble, who is not far from me that has agreed to do my decompression in January so there is hope for me :-)

You are blessed indeed, Jenna :-)

Dear Jenna, I am sorry to hear about your condition, well at least they found out what is wrong with you and now you are going to have an Op...LET US KNOW how you are getting on after the operation please,..i AM WAITING to see the neuro surgeon for a second opinion and reading from all of the people in this forum I think I decided to have an operation with this second neuro surgeon... so I am scare to be honest..but something have to be done..i am not sure if it gone worse if I do not do the operation..I do not know if anyone know about it..I will ask my neuro surgeon as well about it


I hope the neurosurgeon you decide on understands Chiari & it’s sometimes associated conditions. Very important that they have good experience. This is a very serious operation. If you are not on any Facebook support groups you should join. I have learned a lot and it is great for support. So nice to be in a group and truly feel understood. I am on 4 groups on FB and about 4 online communities. Making connections with other Chiarians has been a tremendous help. Best of luck to you and please keep me updated as well.