Chiari Online Support Group

MS or Chiari ( after brain injury)

So first let me introduce myself my name is Ivan i am 32 years old. I have a unique situation or at least what i think is unique.

So 2 years ago i had a TBI when i fell out of a cab of a tractor trailer ( 18 wheeler) and landed on my head and neck. I was told I had a concussion and whip lash. A few days after the fall i started having tingling in my hands along with really bad neck pain and headaches at the base of my skull. Drs told me it was all from the fall. So few months later after seeing a nero and the symptoms not getting any better in fact had more pop up ( i am going to list them all when i am done) I got my PC to order an MRI of my neck. It was at this time that they found a type 1 chairi (7 mm) and a syrinx. So i went to see a neurosurgeon who did a MRI of my brain. At which time it showed “something” on my left side of my brain. He also said that if they syrinx didnt go away in a year he would have to drain it. But they switched focus to the “something” . Several months later and a few new symptoms including lower back pain that was so bad i couldn’t walk they did a nerve test in which it showed issues with my L5 so they did an mri and it came back normal.

So FF few more months they did a second brain MRI and that “something” got bigger. So they sent me to a different neurosurgeon who also did a brain MRI at which time the something turned into many somethings. So it was at this point they started thinking it might be MS. So they did a spinal tap which didnt give a clear answer. So more test later none really coming up with a clear answer either way i had issues walking again with balance mostly on my left side. So they admitted me to the hospital and treated me for MS with IV drugs.

So at this time they are saying its MS but what i want to know is if anyone has been told they had ms with a Chiari? Also if anyone had symptoms start after a neck or head injury?

I just saw a third surgeon and first thing he mentioned was the Chiari as well as the other stuff i have going on with my neck. Narrowing as well as they syrinx and disc issues.

the symptoms i have or have had at one point in the last two years are in order of most common are as follows.

Neck pain along with cracking that sometimes is very painful
head ache at the base of my skull and one sided pain on the left side
left eye blurry and redness/watery ( eye Dr said no signs of ms)
numbness tingling in hands and feet
muscle fatigue arms and legs
cold feeling in feet
balance issues
increase need to pee
memory issues
focus issus
depression
dizzy spells
trouble swallowing
horse voice
trouble sleeping
ringing in ears
fluid like sound in my neck

been a few others but minor.

So if anyone has dealt with anything like this or knows of anyone who has please let me know.

I welcome any advice people can give. ( i was on this site 2 years ago think it was the old site so if i sound familiar that is why)

1 Like

Hello icleary,

I’m brand new to this website so this is one of my first responses for feedback.

I was reading you post and noticed a lot of similarities with your symptoms. I first started having symptoms at 18 years old, I’m 28 now. I was blacking out, loosing tracking of time/my day, memory issues, balance problems, and really bad headaches/migraines. They dx with depression, anxiety and ADHD. This past couple years, I’ve been losing feeling in my feet. I was also dx with eczema on my feet, elbow and face at times. My feet become really inflamed when they are hot and I beakout bad. Well, I have no control, so I end up scratching them and peeling them until they bleed. This is the first time I’ve ever told anyone this, outside of my partner. It effects my self-esteem and sets of my anxiety. Losing the feeling in my feet with the skin problem causes them to get really bad where it’s hard to walk sometimes.
I can’t cross my legs or arms in any way or it causes them to lose feeling and becomes numb with tingling and stabbing. My Neuro. dx with mild neuropathy and it’s also in my intestines. The stomach pain from that is also becoming unbearable. I also have insomnia. So being awake at night with the stomach pains and cramps is hard.
I get pain in my back a lot. It’s hard to lay down, standing up, sitting down or even walking far distances. There are the other symptoms I mentioned I had, they went away a little but now coming back times three. The vertigo is annoying

Bringing this back to your post, growing up I was known for hitting my head. A lot. Nothing that sent me to the ER or caused major damage. (That i am aware of) but as an adult, I’ve never had any head TBI. I had a concussion maybe 6 months or so ago. I had a bad anxiety episode that caused me to pass out. I feel off an embankment and hit my head on a large stump. I was taken to the ER but discharged as it wasn’t too bad, just a concussion.

I’ve never been told I had MS, or not yet. Sorry I couldn’t lend much help with the MS part. Just thought I’d share my stuff with you. I hope you find some relief with what you’re going through.
Chiari Strong!
Mark

Hello
I am new to this site and your post caught my attention. It has been awhile since you introduced yourself. What has happened medically since? I was a police officer with an on-duty “whiplash” injury that progressively got worse. I had the headaches, dizzyness, black-out etc. My PCP ordered an MRI and that landed me at the neurosurgeons office. (this was 2000) I had my 1st decompression and took medical retirement. It has never been proven that the crack-head I fought that wonderful day caused my Chiari (16mm), yet it hasnt been disproven. I will never know if it is something I was born with or acquired. I know I was a very athletic teenager who went through a rigorous police academy and worked the streets for ten years. I never had anything like what I experienced after my injury.
Fast forward 18 years. I had a second brain decompression in 2015, with duraplasty. I continue to have problems with headaches but I try to find positives in each day. I have recently been approved for a spinal cord stimulator. That is what led me here. I am hoping to find other Chiarians with SCS experience. I hope you are well and life is good on your end.
Diane

Well right now i have had no improvement in terms of symptoms. And while they know i have a chiari/syrinx i also have a herniated disk and they are still telling me i have MS. I go see tomorrow in fact a specialist for the MS and i will be bringing up the chiari as one of my questions . As far as the MS aspect of this there is some research that says its connected other that says its not so now its a legal battle while my treatment is in limbo. So at this point i don’t know whats connected and whats not.

As for your whiplash i have read that car accidents can cause chiaris but much like my situation there is little way to prove it. I am told i was “probably” born with it.

On a off topic subject Diane I went to school for CJ and had plans on being a police officer cant run to save my life so after failing the PT test 4 times on the run i gave up. and went into trucking.

Anyway hope you do well with SCS (first time i have heard about it but going to look it up)

Take care

Ivan

I hope your appointment went as expected today. It seems I read somewhere that MS and Chiari are similar but I dont know how. Im sure online searches can be overwhelming to say the least.
I went through the academy in 1992. I cant imagine being a young officer now. I know theres so much technology in a cruiser now that I dont think I could even start the engine!
Its interesting that you chose trucking for a career. I dont know which is harder on the body. I have many family members (young and old) that are over the road. It seems that is hardest on the body wear and tear. I know I dont miss getting hit in the head for a living. LOL
I hope you got some information that was helpful today. Im sure your mind is going in overdrive. As far as the spinal cord stimulator, I am curious to have the trial but I know better than to imagine that is a cure-all.
Take care and have a great weekend.
DK

How did your appointment go a few weeks ago? I go see PM Monday to order the trial on the stimulator. I’ve decided I want a new model from www.stimwave.com it’s wireless and the battery unit does not get implanted inside the body.