Chiari Online Support Group

Newly diagnosed so saying hello 👋🏼 Also wondering about driving

I was recently diagnosed, last week, after 9 months of various symptoms. I was referred to ENT as I really believed it was all ear related. The first consultant told me to do exercises which actually made my dizziness worse and told me to come back in July. A different consultant then saw me and felt it was more of a neurological problem so sent me for an MRI. Well he was spot on cause it showed Chiari, only 3mm, but it explained my symptoms. Im now waiting to see a neurologist. I’m relieved though apprehensive about what will happen now and it’s all been abit of a shock. I’ve never heard of Chiari but I have to embrace it now and try and carry on as normal. I’ve had a good read over the last few days and been looking for support groups like this one. Anyway my main question is about driving as I’m a community nurse, has anyone had any issues with keeping/losing their licence. Obviously a worry as it’s my job but I have no option but to declare it now I have a diagnosis.

I have not had any physician nor testing indicate that my license should be suspended or restricted - either pre or post surgery. Of course, I did not drive as part of my job. I passed any testing required for my license with no troubles. I am sure that you will navigate the requirements as needed - hopefully with no unexpected results. One thing I would suggest is that you do not volunteer any more information than required or asked. Issues about driving licenses should not be approached with a tell-all attitude!

With dizziness as a worrisome symptom with no ear concerns, I would recommend that you try the primitive reflex exercises listed here on the site. You might even know a practitioner that can help you with them! They are great for dizziness that is more brain processing-based rather than the traditionally known vestibular/ear dizziness. Good luck in navigating your new condition.

HI Emma, glad you found the website. I find it very helpful, especially when I was first diagnosed in Jan 2017. You feel so alone, no one you know can relate to what you are experiencing. Most people never heard of it, I hadn’t either. The more you read and educate yourself, will help you to make good decisions on your care and treatment. A healthy lifestyle is important. Lots of water for your spinal fluid. Avoid activities that may trigger headaches, dizziness and pain. I wear a soft collar at night to prevent head neck and shoulder pain, and so my arms and hands don’t go numb or tingle. I don’t lift heavy items, bend over too much, turn my head too much, try not to look up or down. No jerky spinny rides! Tina from WI

Hi Tina,
I have to say, you are right on with your symptoms! I have all your issues plus a list of others. I just bought an adjustable bed so my head could me elevated. (I was gagging at night in the middle of my sleep). I did have decompression surgery in 2013 and noticed symptoms slowly coming back now. I’m on the MRI/MRA testing whirlwind now so I’m determined to see what’s going on in there. I met a local women who had 4 surgeries and she is now just starting to feel relief after the last one. So happy we have this website! It helps a lot. Stay strong :slight_smile:Carol in Orlando

Hello and welcome,
I don’t think you are required to declare it at your job, because it is not a contagious disease. As for driving, I am not aware of someone ever lose their license.The dizziness can be bothersome. Try not to look down, or up bending your head to far back. I had decompression surgery in January 2014, and my symptoms are coming back, especially the severe headaches. I have an appointment with my Neurosurgeon in two weeks. Don’t be afraid to ask others when you need help with lifting and such. Establish a healthy life style, and get rest when you feel you need. Good luck to you! :slight_smile: Anja

Thanks all. I’m quickly realising that I’m going to have to adapt my life as these symptoms aren’t likely to go away. I have answers though to what was wrong with me, you feel people think your making it up there’s that many of them. I’ve reported it now so will just wait and see. I think the biggest thing for me is stress and how much worse it becomes if I’m feeling stressed. Anyway we have to get on don’t we x

Hi Carol, I decided not to have surgery after researching. I think the risk is too great. I can function fairly well…drive, do light chores, watch my grandkids. I gag quite often too, on my saliva during the day and night, after eating. Seems worse when I over do it and don’t rest. Start dropping things too.

I’ve been in pain for over 25 yrs, so I am use to it. BUT…I’ve discovered that resting my head, wearing a collar, traction at home, limited head and neck movement, not bending over, no more alcohol, lots of fluids, getting lots of sleep, no more motorcycle rides, has all eased the pain and lessened the dizziness, dropping things, tripping, numbness, gagging, balance issues, migraines, etc.
Tina from WI

Hi Tina, sounds like we are “twins”, we have the same symptoms! Such a
relief I’m not imagining them! I can learn to live with them, but I need
to make sure I’m not leaking spinal fluid; it causes so many ailments.

Hi, how do you leak spinal fluid? From your spinal column and brain? And where does it go? I have not read much on this symptom. Is that what produces a syrinx? I read that someone thought spinal fluid was leaking from their ears. And someone thought down their throat from their sinuses. I don’t think I have a syrinx, but my most recent MRIs were only of my neck and head. Thanks for any info. Tina from WI

I haven’t had problems with my license per se but me and my kids were going about 2 miles from our house to the local grocery store and my husband called me and asked me had I got there yet and I had realized that instead of going to the grocery store I totally went the wrong way and ended up about 10 miles the opposite direction away from everyone not realizing where I was going or what I was doing had no clue to what even was going on so that’s when my husband said i needed a chauffeur