Chiari Online Support Group

Hello! Newbie here!

Hey All! I’m 34 year old Mommy from Northern NJ. I was only “diagnosed” with Chiari recently after being injured in an automobile accident this past November. It’s still, up in the air, whether or not Chiari is truly the culprit of my symptoms, but it seems to make the most sense. (Both to myself and my PCP). If anyone has any suggestions as to a good Neuro or NS - please send them my way! (I say “diagnosed” bc so far my Chiari has been disregarded as congenital and an incidental finding on MRI. SMH)
Since November, I have been suffering from a headache and neck/shoulder pain - daily. It can vary from slight pressure to debilitating pain with nausea/vomiting. My face is constantly tingling as if Novocaine is wearing off. It’s quite annoying to say the least. Even more concerning is severe weakness and my right leg - and now most recently my right arm. I constantly have a limp and have to frequently use a cane on my “bad days” where I’m quite literally dragging my leg behind me. I actually have to lift my leg with my hands to get into my truck or over the side of the bathtub. Now, I have burning pain in my right arm that is seriously effecting my grip strength.
Anyway - enough of my rant! Thank you all for being here. I’m sure you all feel the same way I do: It is really nice to know there are others who understand what you’re going through!!

<3

Hi! Your the second person I’ve met on here that found chiari after and auto accident where doctors aren’t sure if that’s the cause of your pain. Finding a good doctor is hard. I still haven’t been able to find a good neurologist but I had a really excellent surgeon named Dr David Wells-Roth. He’s located in Morristown and he did my surgery in saint barnabus hospital. I’m from Essex county so hopefully he’s close enough to you. I reached out to a dr Neil Feldstein in ridgewood I believe but his main office is in the city and it’s a little difficult in my opinion to get an appointment with him. Not sure if he is good or not, but when I researched him, it did say he specialized in chiari malformation. good luck to you!!

Hey, Dachmosgirl,

My Chiaris was also triggered by ‘car issues.’ I could have gone to my grave with no symptoms, I suppose. But, it was while I was working in the 3rd world country of Papua New Guinea, our national driver loved to careen down the potholed ‘highway’ - and the incessant jarring of my skull down onto my brain stem provoked disabling symptoms.

That’s interesting you say you drag a leg around on your bad days. Does it happen to be your right leg? Even after decompression surgery in 2012, I still have reoccurring paralysis/weakness every 4th day. The first symptom I get when I start going ‘bad’ is that my right leg - and my whole right side - stops functioning! I start walking around like a drunk. Soon - if I don’t have a cane nearby, I will topple! My Neuro-doc did mention that it’s the right side that goes first. But, he didn’t explain why that is. I’m down here in NC - and I traveled to Hendersonville where Dr.Rosner does nothing BUT Chiari’s surgery. I know that’s a bit out of your way. But, at one time, I was considering going up to NY to the Chiari’s Institute. Seems finding a specialist is worth it - since we have such a ‘specialized’ disorder!!???

Thanks for your reply! It is absolutely my right leg! Everything is right side - leg weakness, burning arm pain and weakness. I’ve started to get tingling and burning in my left arm as well, but not nearly as bad as my right.
I’m not far from the Chiari Institute in NY. In fact under an hour. Unfortunately I’m running into insurance issues, as I am being treated under motor vehicle insurance, and currently don’t carry medical insurance. I have yet to find a doctor that will even consider that the accident has made my Chiari worse / brought the symptoms on. The headaches, facial tingling and weakness have been going on since November '16. I’m so so afraid that if I’m not treated soon they are going to get worse or become permanent. :frowning:

I know you wrote that even post decompression you are experiencing weakness as well. Did the surgery alleviate any of your symptoms?

BethR
August 25
Hey, Dachmosgirl,

>  My Chiaris was also triggered by 'car issues.' I could have gone to my grave with no symptoms, I suppose. But, it was while I was working in the 3rd world country of Papua New Guinea, our national driver loved to careen down the potholed 'highway' - and the incessant jarring of my skull down onto my brain stem provoked disabling symptoms. That's interesting you say you drag a leg around on your bad days. Does it happen to be your right leg? Even after decompression surgery in 2012, I still have reoccurring paralysis/weakness every 4th day. The first symptom I get when I start going 'bad' is that my right leg - and my whole right side - stops functioning! I start walking around like a drunk. Soon - if I don't have a cane nearby, I will topple! My Neuro-doc did mention that it's the right side that goes first. But, he didn't explain why that is. I'm down here in NC - and I traveled to Hendersonville where Dr.Rosner does nothing BUT Chiari's surgery. I know that's a bit out of your way. But, at one time, I was considering going up to NY to the Chiari's Institute. Seems finding a specialist is worth it - since we have such a 'specialized' disorder!!???

Hey, not sure if your reply was to me or not,

I did have relief after my surgery, for about 2 years actually. I can’t jump on trampolines or ride roller coasters that are too jerky, or turn too quick and I can’t prepare for it, but I never really liked roller coasters anyway. The issue came in when I started working out and trying to take better care of my body and get in bette physical condition. I have numbness and tingly down my right arm, starting around my neck area/right shoulder blade. it also goes up to my head, near my right eye and my forehead gets tingly and my right eye hurts real bad. Definitely a scary scary thing. I’ve tried so many things, seen so many doctors to try and help me. Nothing’s worked so far and the last doctor I saw recommended I go back and see my surgeon. I see him in a week and a half, so I can keep you posted as to what happens so I can give you a better understanding of what’s going on with my body 4 years post-op and if this is normal or not. You should really look into insurance if at all possible. I know it can be expansive but my surgery was 50k for just the neurosurgeon before insurance. You can either find a dr in network or find a doctor that’s willing to work with you to figure a way to get the insurance to pay. I ended up paying less than 800 bucks for the surgeon, the anesthesiologist, and the 5 day hospital stay. I’ve heard that even if you go through the auto accident insurance, they only cover up to so much. And they’ll try to do the very very bare minimum to help you. Unfortunately, I believe chiari is definitely not something to take lightly just because it’s not very well known and paralysis can become permanent(from what my surgeon says). Don’t settle for an answer that doesn’t make you feel comfortable about your future. I’ve seen plenty of doctors and have tried so many medicines that I refused to continue because 1 they didn’t help and 2 the doctor was just trying to get me out of the office and wouldn’t believe how I was feeling. I hope this helps!!! Let me know how everything goes and what ends up happening!

Aimee.