Chiari Online Support Group

New to Chiari Diagnoses... does anyone have these symptoms?

#1

Hey y’all! I just found out I have Chiari like two weeks ago. I had two Cat Scans, doctor said they look mild but I have an MRI on Sunday and then I meet w a Neurosurgeon on the 26th. I had been brushed off as being “anxious” and “everything is in my head” for years because I’m 23 and all my tests came back great like bloodwork and stuff. Some symptoms I have are weakness/numbness/clumsy feeling in my arms and legs, a constant dizziness that’s like a rocking or swaying like I’m drunk or lightheaded, heart palpitations, some hearing problems, eye and head pressure, feeling like I need to crack my neck, brain fog and concentration problems. Also sometimes feels like I’m gonna walking on a trampoline? Not many headaches yet, very minor and aspirin takes them away. Does anyone have similar symptoms or advice on what I should ask my neurologist? Thanks

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#2

YES to all of the above. When I was your age (Now 63) I was always pulling on my kneck.

#3

Also, yes to all of the above. I didn’t have significant symptoms until after having babies in my early 30s - now I’m 51 and off and on have all of the symptoms you’ve mentioned, plus the headaches - often severe - and muscle spasms in my neck that can lead to the severe headaches. My daughter had a decompression surgery at the age of 6 for syringomyelia (she never had symptoms) but had a brain tumor (craniopharyngioma) prior. My son, now 18 and very much into extreme sports, is now presenting with some of the very same symptoms. We will be seeing his PCP soon to request an MRI. I have not had any surgeries due to the fact that when my daughter had hers her neurosurgeon mentioned how much more difficult it can be to recover post surgery and then need additional surgeries as the years go on. A close friend has had that very experience for years. Ask your neurosurgeon about the recovery time he/she has seen in patients and the need for repeat procedures etc. Folks on this site that have had treatments/surgeries - their testimonials can be very helpful too.

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#4

Yes same symptoms. Some days better than others even after decompression.

#5

Hey Courtney,
Welcome to the Ben’s Friends Network.
I have to say that for many of us with rare conditions, of which Chiari is one, your experience of being brushed off is not unusual. Your dr has sent you for all the ‘normal’ tests ie blood tests etc and when they comeback as being normal, often dr’s do not investigate further.
When it comes to neurological conditions your symptoms are very common. I have a neurological condition and I have been accused of actually being drunk when I haven’t touched a drop. When I’ve stated that I’m not drunk at all, I’ve gotten a response of “Ohh so you’re usually that clumsy then?” which doesn’t help in the slightest.
When I was younger, I did get headaches but most were minor, but over the years they did increase somewhat, then they operated doing a craniotomy. This was when I found out just what a BAD headache was, I had never felt pain like it. The pressure behind my eyes is often simply unbelievable. That was an education I could have done without. Very Nasty.
As for questions for your neurosurgeon, there can be many depending on symptoms. I would suggest having a read of other people’s posts here as some may be relevant, some may not. One of the more common questions often asked is the size or length of the cerebellar tonsil. Often if it is considered small some medicos may say it is insignificant or not symptom causing. My suggestion here is that if you are having symptoms, you emphasis this point. I would also suggest that you keep some sort of record or diary of symptoms and their frequency. We can often go to specialists thinking we have symptoms ‘Ohh maybe once or twice a month’ when if we actually kept a true record we find it is more like ‘once or twice a week’. Sometimes medicos may ask us to do such a diary, but if you already have such documented notes it proves you are already being proactive and may have the benefit of shortening any ‘wait and watch’ advice. We are often told to wait and watch, so do not be surprised if this is the advice you are given. Some medicos are of the opinion that if you are not having headaches, then symptoms are minimal BUT this often is not the case, especially when you take into consideration every time you have the dizzies, the heart palpatations, hearing issues, head pressure, brain fog etc. List them all in your diary.

Please know one thing, even if the dr’s minimise your symptoms or make out that “It’s all in your head” you are not alone in all of this. Many of us have been in exactly the same position, so if you need to chat, come chat to us. We know from our own personal experiences, not a university textbook, just what this is like. We are here if you ever need to chat.

Merl from the Moderator Support Team

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