Chiari getting worse; Specialists in Asia?

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Chiari getting worse; Specialists in Asia?

Postby amy1021 » Fri Nov 09, 2012 10:45 pm


I haven't posted on here in a very long time, mostly because I hadn't been having many problems associated with my Chiari...which was a really good thing. I'll have to start from the beginning, so I apologize if this post ends up being really long.

Almost 4 years ago, I was diagnosed with temporal lobe epilespy after having a seizure in my sleep. Six months later I had an MRI (unfortunately, there were Long wait times for MRI's where I was living), and it was discovered I had Chiari malformation, with a herniation of 7mm. At first I was shocked, and a little overwhelemed after reading up about it, but after a while I was okay. I hadn't had any major life alternating symptoms...the most annoying ones probably being my horrible balance, headaches, and dizziness/"seeing stars" when moving my head too quickly.

Everything was fine, so I decided to take a teaching job in China and movied here August of last year. So, I've been here for two years now. Lately, I would say in the last few months, I've been experiencing some worrisome changes in my symptoms. My toes and bottom of my feet are becoming numb several times in a day...I've noticed it especially after I've rode my electric scooter to work (so, I guess my feet have been elevated or my legs are bent a certain way that it's affecting the blood flow to feet???). I have also been experiencing more back, neck and shoulder pain. I really noticed it after yoga two nights ago..the pain lasted for a day, off and on. I started doing yoga last year, thinking maybe it would be good for me, but now I'm starting to wonder if it's making things worse. My throat has gotten worse as well. I remember last year singing with the kids (I teach grade one) during class, but now I find it extrememly difficult because my throat will get this annoying "tickle" or scratchy feeling and I will have to drink a lot of water. I'm not sure if that is related, but seems as if it could be. Lastly, and finally, my headaches have been more frequent...however, I don't like blaming headaches on chiari, as I know it could be a number of things. Although, most of the headaches are originating at the base of my skull/my neck, which leads me to believe it is chiari related.

So, I want to get another MRI to see if my herniation or the syprinx (that they claimed was on my spine, but not a big worry at that moment) has gotten bigger. I've only had that one MRI about 3 and a half years ago..and I know, I should be getting them regularly. My question is: does anyone know any Chiari Specialists anywhere in Asia? I'd be willing to go almost anywhere, as flights are rather cheap from here. I'm afraid to just go to a regular neurologist here in Guangzhou, China...I'm not sure how reliable they will be.

I really hope someone can help me out. Thanks!
Chiari 1, 7mm; Temporal Lobe Epilepsy
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Re: Chiari getting worse; Specialists in Asia?

Postby smoovie0704 » Wed Feb 06, 2013 8:13 am

HI I also have not been on for quite some time, but I just read your post. I hope that you have found a specialist by now. I just wanted to say that I have Chiari 9mm herniation and severe headaches daily if I do not take my prescribed med every day. I have the cape like feeling across my shoulders and back into the neck as well. Just plain hurts. I started having the numbness and tingling in my feet also which appeared to be worse if I drove my car or when I was in the office with my feet in front of the electric heater. So I thought I may have had SM, but NL who is excellent, did thorough testing and he says it is Fibromyalgia. Rheumatologist has sinced diagnosed me with Rheumatoid Arhthritis and Reynaud's syndrome. I would say your first step would be try to get a C-Spine MRI and rule out SM. And then if that is negative, see a rheumatologist or internist.

Hopefully you are on your way to finding a good medical plan. Good luck to you!
Complex Migraine w/o Aura
CM 9mm
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Re: Chiari getting worse; Specialists in Asia?

Postby reedy » Wed Feb 06, 2013 6:59 pm

Hi Amy,
Good for you, embarking on an adventurous new life. Newfoundland to China!

Its really important to stay as active as you can, but my reaction on reading your comments on yoga is that you should be very cautious with it. I used to do lots of yoga, and I look back and think how impossible it would be now. Don't even think about inversions, shoulder stands, etc. But it probably is good to do upright poses that keep you working on your balance.

Also, the scooter sounds a bit risky too. I used to (before my SM set in) be a keen motorcyclist. However, the last time I was on a bike I rode on the back of a friend's fast rice rocket, just 45 minutes in to work, and I had all kinds of symptoms all day. Instead of my old motorcycle feeling of 'wow, that was fun', I felt a distinct 'I don't think I enjoyed that so much, might not do it again'. And I haven't.

This changes you. Pay attention to the symptoms, keep active, but don't over push yourself.
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Re: Chiari getting worse; Specialists in Asia?

Postby tennesseewalker » Sat Mar 02, 2013 2:31 pm

Wow Amy, you're sure in a quandry. Definitely NEVER do anything that increases CSF pressure. And your balance issues stem from your cerebellum, so I would see if I could find someone affiliated with a large hospital in a large city. If surgery is recommended, then you could search for a good NS to do the job.

Is there a way you could make the scooter seat more energy absorbing? Maybe a seat to put on top of the seat? Just thinking out loud.

Good luck Amy.
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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