Chiari Malformation Type 1: Recent Diagnosis
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Hi,
I am 28 years old and have recently been diagnosed with Chair Malformation Type 1.
I have had symptoms for coming up to 2 years; severe neck and shoulder pain, ahcey joints, pins and needles in hands and feet, trapped nerve type feeling in my arms and legs, dizziness, blurred vision and I've recently started suffering with headaches.
I'm currently waiting for an appoinment to have my eyes checked as have swollen optic nerves and blurred (ish) vision. After that I will likely need to have ICP monitoring too.
All of this was a bit of a shock, I had convinced myself I just needed phsyio.
Has anyone had the ICP monitoring, and if so, if it shows increased pressure, do you know what the next step is? I've done lots or research but I think speaking to people who have been through it will prove to be much more informative.
I've had to infrom the DVLA about the Chiari diagnosis, has anyone had there license revoked because of Chiari?
I work as a dental therapist, so my working life is very difficult as my working position heightens the symptoms in my neck, shoulders, arms and hands massively. It's looking very likely that I will have to change my career very shortly as I can't continue to put myself through this daily grind.
I'm would really appreciate any advise/knowlegde that anyone can offer 
Thank you
0 likes, 3 replies
Linleel sr1988
Posted
It sounds like you have several symptoms. Chiari Malformation is not going to go away. The eye problems may be due to the Chiair. You can treat symptoms with medications, painkillers, etc. but they will not change the anatomy- the skull is too small for the cerebellum and as a result the cerebellum is being pushed against the brain stem and the tonsils are pushed through the hole in the skull where the spinal cord goes out. I didn't have an ICP. I had a Cine MRI which showed Cerebral Spinal Fluid Blockage. If your symptoms are making it difficult to work and do daily activities, you will probably want to get decompression surgery, which cuts out part of the skull in the back and opens up room for the cerebellum. I had mine done June 2.
Not sure how you can do your job unless you can sit in a chair or something. If you can't do your job, you can apply for disabililty. Or you can obtain some drugs to help with pain and other symptoms (see a Neurologist).
I would suggest Research everything you can find; obtain a copy of MRI and any other test results so you can study them and understand them and all; Research any tests they suggest; Don't let the DOCTORS push you around. This is a RARE disorder and most NS and Neurologists have limited experience with it. So they tend to look for certain symptoms and ignore other symptoms or try to suggest other symptoms are due to something else.
Good Luck!!
sr1988 Linleel
Posted
Linleel sr1988
Posted
I was in the hospital 4 1/2 days. I had a 5 hour surgery where I was prone on a table with my face pushed through a hole in the bed. As a result I had a swollen lip from where a breathing tube went down my throat. At home, I had trouble at first from Nausea from the painkillers and had to take dissolvable drug for that before I could keep any food down. I had a walker to get around with, which was dispensed of after the first week. I was able to go on an airplane trip to Colorado after 3 weeks. It takes a bit to get your energy back and your leg muscles are pretty tired. I had ice packs on my incison and hydrocodone for the first week or so. But gave those up for tylenol and alleve. I took it pretty easy while in Co. for the week. After that, it was just a slow/steady journey.
I haven't had a burning sensation on top of my head. Bear in mind that there are a whole slew of symptoms you can have, not just the short list Doctors tell you. Your cerebellum is being squished against the brain stem and against the skull. So it makes sense that a few nerves and tissue will be damaged.
Immediately post surgery, my vision returned to perfect and I was no longer dizzy and umbalanced. So that's something to look forward to! Good luck!!