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Help with Chiari diagnosis
by deakle, Aug 20, 2008 06:55PM
My wife is 49 and has been suffering from symptoms for 6 years. She has recently been undergoing treatment for possible Basilar Artery Migraine disease (medications), however it does not seem to be improving after about 6 months. A recent MRI of her head and spine showed a Chiari Type I Malformation of 6 mm. At the time, her neurologist said that this may be a problem but we would need to watch it for a while and see how she progressed. We recently saw an ABC Primetime report on Sean Young who suffered from Chiari Type I malformation and his symptoms (with the exception of the headaches) really hit home for my wife. Her symptoms include a feeling of intense "pressure" from inside her head "pushing outwards", short term memory loss, sensitivity to bright sunlight, losing the ability to speak for hours at a time, confusion, difficulty walking, difficulty swallowing. If she does anything like reading a lot, having a long involved conversation, or laughing a lot it brings on the "pressure" feeling in her head. We are going to get an appointment to visit a neurosurgeon. But we wanted to ask if anyone diagnosed with CM was experiencing these symptoms without the painful headaches? Does my wife's symptoms sound familiar to anyone? Is the CM of 6 mm a definite confirmation of CM?
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These symptoms sound very classic of Chiari to me. The "pressure" she is feeling is probably from elevated intracranial pressure. It's amazing, actually, how the way that you described some of the symptoms is almost word-for-word the way I have described my daughter's symptoms.
My top five recommendations are:
1.) Educate yourselves. Do as much reading on this as possible. The more you read, the more you will be able to discern what is fact and what is fiction.
2.)Consider finding a Chiari expert.
3.)Watch the educational videos at The Chiari Institute website. These are fantastic! Like a mini-seminar on Chiari. If you would like the link, just let me know. They should be easy to find with google, but you do have to click on the "patient education" link for the Chiari vidoes.
4.)Join ASAP. Go to www.asap.org/forum
5.)Take a look around www.chairione.org for lots of great info.
I hope this is helpful info!
Blessings,
Rebecca
If you do not mind my asking:
How old is your daughter?
Does she experience the painful headaches? My wife does not (she has the "pressure") and we are unsure if you must have the headaches to have a definitive diagnosis of CM or not.
Where (what hospital/clinic) was your daughter diagnosed?
Is your daughter undergoing any treatment now? We have read about the surgical treatment but have also read about medication being used as well, but cannot find what types of medications are used.
I would definitely be grateful for any links that you could offer to the videos or any other websites. Thank you so much!!!
I pm'd you about the first post, but just saw this question. My daughter's herniation size was only 2-3mm. So, not large, but she certainly had many symptoms and was to the point of being unable to take care of herself.
The size of herniation does not correlate with the degree of symptoms, and it is not indicative of the seriousness of your condition.
I hope this answers your questions. Please let me know if I can help in any way!
Rebecca
I agree with everything youngwife said. Definitely have her checked by a Chiari specialist. Most doctors and even a lot of neurologist and neurosurgeons aren't familiar with this. Make sure you find one who is.
I'm not a doctor nor a medical expert in any way, but I find in my study of Chiari malformations that, generally, doctors don't start talking surgery until around 8mm, but that's not a fixed number. She could need surgery effectively at 0mm or not need it at 10mm.
The symptoms of this malformation can vary widely. Headaches are a good indication, but they aren't necessary for confimation - the MRI showing a 6mm herniation is "proof". A lot of her symptoms are familiar to us on these boards - I have (or had) pressure inside my head, short-term memory loss, sensitivity to bright sunlight, difficulty walking, difficulty swallowing, along with extreme dizziness and headaches. Since the surgery, most of mine have improved, but not all and not completely.
Also, understand that there is no cure for chiari. I'm not trying to scare you or anything, just stating an important fact. There are treaments to help with symptoms and they can do wonders for how she feels, but she will always need to keep an eye on things and get regular MRI's (I've heard at least every 2 - 3 years.)
Have they mentioned anything about Syringomyelia? That would (to me) explain some of the walking problems. Syringomyelia would be seen in her spinal MRI and are basically places where spinal fluids start building up. Again, not trying to scare anyone but, this can lead to paralysis if untreated.
Let us know what you find out and good luck to both of you.
Now keep in mind, I'm not an expert. There are people on these boards that have much more experiance with that side of it then I do - but as I understand it, there are certain things that can help with symptoms and pain management, but as far as I understand, these are mostly for milder cases, or at most, slow the process.