Hi all I was diagnosed today, 22oct, because of nerve numbness in my arm. Turns out I have herniated disc in my neck and they found this, chiari from the head and neck MRI. I’m set to leave my duty station I’m at now in a little over a month and I’m concerned that this will get me sperated from the Army. What are the questions I should ask if I see a surgeon here in new York? I am thinking I should wait until I get to my new duty station in Texas, I can live with the symptoms I have had for years just never thought that anything like this good be wrong. Always wrote of the shaky hands and headaches as being low blood sugar. Turns out the docs I have seen in the past were treating me for early onset Parkinson disease. I don’t know where to even start honestly with what I should do, I have been in the military for over 12 years and worried about what will happen with my family if they decide that this is something I can’t be in the military anymore.
Thank you all for allowing me to join the group and how that we can all help each other.
Thank you for the answer so soon. Well the NL told me today that the distance is 6mm. He looked right at my wife and I and said you need to have your PCM refer you to a ns soon. I asked him what soon means because we leave New York on 1 Dec and I don’t think they would be able to see me that soon, to see that kind of specialist we have to travel an hour away to Syracuse. Like I said though thank you for listing the questions I need to ask I would have never thought of some of those.
Most definitely thank you for your service! 12 years is a long time to dedicate to the forces to have something like this pop up in your midst. It's a crazy diagnosis and scary that so little is known about it. I would also ask about your cerebral spinal flow and if this has an effect. You've definitely come to the right place for support. I'm new here and already feeling so much comfort from talking about something most people are completely in the dark about!
Kevin, glad you found us. There is a great surgeon in NY with lots of Chiari experience, Paolo Bolgnese.
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
Vitamin Bs deficiencies
Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.
Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This 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 without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required.
I saw my PCM this morning and it was a little bit of relief that he said he knew what it was and that he saw another soldier with this not long ago but he knew the process was going to take awhile, just for the fact that the hospital they refer you to is 3 hours away and they are usually backed up.
Kevin,
I’m active duty with over 20 years. I had my surgery a few months ago but if you have any questions as for as military and this condition feel free to ask me. I had my surgery at a civilian hospital about an hour away from my base.
Just wanted to give an update. The headaches are becoming more frequent and more neck, shoulder, back pain and just general pain. My ns said he doesn’t think the chiari is what is causing this because there has been no change on images. He told me when I first saw him that he wasn’t worried about the chiari and was more concerned about the herniated disc and he thinks that this is what is causing the headaches and pains. Supposed to see him again next week and get a new MRI done so maybe we will have done more answers.
jenn