Chiari isn't the problem.. Now what?

Just heard from Dr. Ringer from The Mayfield Clinic, and after reviewing my MRI and Cine MRI, he has decided the malformation isn’t the problem. He told me I should work close with a NL to figure this all out… Now I am stuck with worsening symptoms, heavy nerve damage, and no answers. What now? Between pain, difficulty walking, and difficulty breathing, I can hardly work. If I lose my job I’m SOL, and right now I have no justification for missing days… I’m beyond lost at this point.

Hey JoeV! You definitely are having some severe symptoms and they need to be addressed. You may have to go to another NS try and find a chiari specialist. I don’t know if Dr. Ringer is but even if he is sometimes you have to see two or more chiari specialists. Hang in there I’m definitely sending prayers your way! This journey isn’t easy by any means and it’s hard to not have validation for the symptoms and the suffering your enduring. It’s hard doing research when you don’t feel well I know. Best wishes to you let use know how your doing and take care!

Thank you all for the replies. Nykki, thank you for the link, I was not aware that Cleveland Clinic had that! All my doctors are with the Cleveland Clinic so that will work out awesome.

How far did they do the mri? Tethered cord can also be a possible issue as well as IH. To see a there's cord is very difficult and could needed to be specifically looked for. Add far as IH, a lumbar puncture is the only true way to tell. Many doctors believe our symptoms are not from the Chiari itself and there are many other possible factors.

If you aren't receiving the attention you need find another doctor and another and another until you get some results. It took me over 5 years worth of doctors and 3 States before I finally got some answers and relief (emphasis on the "some").

You must be your own advocate and become an expert yourself. This is the one thing I have learned through my journey. I was at my wits end, wondering when I was going to just fall over and die due to the intense pain and symptoms. But I refused to take "is just a migraine" for an answer and finally got a referral to a neurologist who ignored my scan showing the Chiari!

At that point I was devistated and just quit. But the pain worsened and I lost the feeling in part of my left arm, so again I went back to my primary doctor who I told I wanted to see Dr. Oro.

Wallah! I got results and a choice of treatment options. I did undergo surgey but not decompression although decompression was one of the recommendations. Don't get me wrong, I still have issues and plenty if pain but it is at least manageable most of the time.

Anyway, my point being that this diagnosis leaves us with much pain, confusion, and few solutions but there are some doctors or there that can help you. Keep on until you find the right one for you who will get answers and the relief you need. I will keep you in my prayers.