Hello, all. Just joined today.
On Monday, I found out I have a Chiari Type 1 Malformation, 6mm descent.
Just before Christmas, I had DEVESTATING pain through my neck and down into my shoulder on the left side. I went to my old physician, who sent me for xrays. Those revealed some osteoarthritis and DDD (I'm 37 and have had Lyme in the past). The pain didn't decrease, so I saw a new doctor-- an Osteopath-- who did an adjustment and sent me to the hospital for an MRI. The MRI revealed a mild to moderate bulge herniation at C6/C7, Chiari Type 1 malformation (6mm), and some cervical spine straightening. I am now seeing a neurologist on 8 February for a follow-up on the results of the MRI (first available appointment, he's very popular).
Of course, the first thing I did was read up on Chiari. It does explain a lot of the symptoms I have been having... I've been tested for RA, Lupus, Thyroid, and dozens of other things because of issues like pain, headaches, and fatigue.
Just wondering what to expect now. What sorts of things should I ask the neurologist? Can anyone give me a lead on what happens now... what tests are coming up, etc.? I had a number of blood tests before the MRI, so I can bring those results, and my "films", which are on a CD from the hospital... now what?
Thank you, everyone, and thank you for welcoming me!
Sorry, not sure if this is important: I am on a corticosteriod now for swelling, until I can see the Neurologist, along with Naprosen/ Tramadol HCL for the pain, and have a prescription for Flexeril as needed. I have been told not to see the Osteopath or Chiropractor for adjustment until I see the Neurologist.
Welcome my advice is put your patience hat on, everything seems to move real fast then you might (hopefully not) run into a little run around a LOT of testing a LOT of doctor swapping but they are just making sure all your symptoms are related to the chairi since there are so many. Glad you’re here let us know if you need anything there is a pleathra of wisdom take advantage good luck
first off welcome, I know I am a little late with this but better late than never. next sounds like the path I went down. when my head clears some more I will share some more with you about my journey. I think it might help you.
do you have a syrinx as well?
here is a brief overview of mine collapsed one day while preparing to shower when I was 39 y/o then doc could not find out what was wrong was finally diagnosed with POTS, chronic cardio myopathy, syringomyelia, and chiari - throughout the course of several years with the ruling out of fibro, lyme, lupus, ra, etc... along the way I had neck fusion from c5 - c7 and decompression
OK, still learning the lingo, so to speak... what is a "syrinx"?
Welcome Joy.... a syrinx is the build up of cerebral spinal fluid in your spinal cord. It is a common complication with Chiari. Brandi hit it spot on, put your patience hat on. You will visit a lot of doctors and have a lot of tests. And, please, do not go to a chiropractor until you've been fully evaluated and discuss it with a neurosurgeon. If you have an adjustment on your neck it could seriously harm you and cause more complications. If you have a syrinx as well, any type of adjustment can be very dangerous. I do not have a syrinx, and have been cleared by my NS to have chiropractic treatment on my hip and very low back for severe osteoarthritis.
I now have a scheduled appointment with a neurologist on 8 February and a neurosurgeon on 15 February. The Neurosurgeon is supposed to be something of a specialist in Chiari Malformations (I realise it is not an officially recognized specialty, but he apparently takes a lot of cases) and is listed as a Metro NYC Top Doc.
After meeting with him, I will let everyone know how the practice is... this is Dr. Mark McLaughlin of Princeton Brain and Spine Care (NJ/PA).
I just wanted to welcome you to the site. It looks like you've gotten lots of good advice already. Mostly all I can say is trust your instincts and like others have said be patient. I know, what a joke when you're in pain but my worst fear is some Doctor will do something to make it worse. Good luck to you with your "journey". Everyone here is awesome and so supportive! Don't hesitate to ask for help, complain, or d whatever it is you need at the time. Enjoy the good days and keep us posted on how you are doing.
Wow you’re so lucky to have those resources available to you I know there are some on here who drive for hours or fly to see dr. Good luck I’m so happy your getting taking care of so quickly
I'm in the megalopolis between NYC and Washington... luckily, there are are a lot of top hospitals in this spread. We should get something out of it, given the traffic!