Ive heard so many of you talk about the numbing and tingling and here I am after a road trip this weekend with my husband, I’m waking up with complete numbness down my neck & both arms. Tingling & zaps also suddenly are getting worse down to my hands, fingers and legs!! Oh my goodness its bad.
I am 44, a 5mm Chiari, diagnosed this year due to a car accident one year ago. I have been dealing with all the other symptoms like pressure, headache, pain & swelling along the right side of my face and neck, but nothing like this until now. I also have not been to my massage therapy in two weeks so I was wondering if that may be one reason. Sitting too long the car I wondered if that triggered it.
What could be the long-term results? Why am I going numb? As of now I’ve had an Mri csf flow study. It showed poor or dampened flow along the back of my head. Is this the reason?
I am trying to put all my paperwork together to find one of the good neurosurgeons in our area - I have a few names. My neurosurgeon is excellent but he’s not an expert at Chiari however he has conducted some surgeries for Chiari. It’s very scary when we talk about surgery but it’s also scary to see all these symptoms happening.
I am very strong & optimistic about what I’m going through and what I am facing, but its starting to get scary and disabilitating.
Thank you for all the daily information, support and love that I get here!!
I always found my symptoms were worse after being in the car for long periods. I would say the decreased csf flow is causing your tingling and numbness. I had tingling in the feet and hands frequently before surgery and now it's very rare that I experience it.
I went on a road trip to S.C. last year and when we came back i had the worst pain in my neck. I went to my Chiropractor for treatments but after a month and no relief she sent me to have an MRI of my neck..this is when we found out I had Chiari. to think years of "headaches and vertigo" no one knew what was wrong until now. I am almost 10 months post surgery and all new symptoms. Tingling in my arms and hands when i wake up....soooo not good. I have two herinated disc in my neck which causes me to have constant pain from my neck to my fingers on the left side. I think the car ride aggrivated my Chiari but I am thankful that i was diagnosed instead of being called a "person looking for attention" Hang in there! look for a Neurosurgeon who specializes in Chiari...my NS is Chief of Neurosurgery at two of the top hospitals here. good luck
Thank you. Sorry to hear that. Yes im going to chase down one top neuro in FL soon. He only takes certain cases, Im hoping he will at least meet me. Mine is good but i need a better one in the long run.
Car trips and sitting too long is horrible for me, but laying down every night is scary too. I feel so many symptoms at night and I toss n turn a lot. I will tell you, my life has drastically changed, weight gain, pain, zaps, brain fog, weakness and Im unable to do the many things I used to do, but Im staying optimistic and hopeful.
Hello Jozy, I too have a 5mm Chiari. It seems like it is at it's worst when I am tired and had a long day. Especially if I have had to sit too long. I am still going through tests and haven't had the csf flow done yet. I think my neuro is more looking at MS. It's really concerning to me that I need the correct diagnosis and treatment. Good luck. Hope you get a great neuro.
MS? They tried to make me think at the beginning I may have MS or epilepsy. Isn’t that crazy and it was Cleveland clinic. Anyhow I do have a good neurosurgeon that confirmed it is Chiari and regardless of the 5 mm I have a lot of symptoms. Get the CSF flow study as soon as possible. I found out I had blockage all throughout the back of my head which is causing the pressure and pain (feels like my face & neck are swelling). My csf only flows through the front part of brain.
Wow that exactly describes the pressure that I am having just today. It even keeps making my ears pop! I called to try to get my MRI moved up so at least they may get a better measurement. I have a cervical bone spur that needs checked for size also.
oh and forget about even sitting on the toilet long… Complete numbness…Lol!