I was diagnosed and never followed up. I literally just didn’t go back after my MRI. I saw my results online and thought, “Chiari? 6mm? What the heck is that?” I’m a full time RN student with recent cognitive problems. I’ve managed amazing grades but I’m at a loss for words, literally, in the middle of a convo. I have stort term memory loss, I can’t walk or run on a treadmill anymore without bounding off the hand rails. I’ve been to audiologist a who say they have no explanation for my ear pressure or ringing. So I’m here to ask if anyone has these symptoms, if it can get worse in a couple years, or if this sounds familiar.
I too also have memory problems with the chiari. I also had the fullness and ringing in my ears but after decompression surgery all symptoms have subsided besides a little memory problems and trouble getting out what I want to say at times. I know what I want to say by sometimes can’t get the words out.
I have the same kind of word-finding difficulty. I also often produce the wrong word, for example saying, "I'll frost the pizza" instead of "I'll sauce the pizza." I've also fallen into the closet when trying to hang things up. I was diagnosed in 2002 and this had been worsening gradually since then...until in December 2015 I lifted something heavy, got a horrible headache and nausea, and never fully recovered. Now I have a constant mild headache and nausea and my word-finding problems have worsened. So, yes, this sounds familiar and it can get worse after a couple years. I had wanted to do without surgery but now seriously considering it.
For me it's like my mind sometimes stops in the middle of a sentence. I had terrible memory broblems around 5-6 months ago when I was under a lot of srtess when my health was getting worse and I couldn't work anymore and it was hard to communicate to doctors, because everyone thought I had depression. I saw a psychiatrist who eventually admitted my symptoms aren't caused by depression. Now my memory is better, but all of the other symptoms ( fatigue, occasional pain, terribly sensitivity to sounds, extreme sensitivity in the back of the head to steps, even small vibrations, pressure in head and others) are the same or worse.
Cand this get worse? Yes. But it also can get better if you see a neurologisat and a neurosurgeon. It is often the case that a problem that can cause permanent damage can be treatet and the damage can be prevented. I'm not a doctor, and I will not be able to explain this correctly, but I'll try anyway. Chiari can cause nerve damage in two ways that I know of. One is by a syrinx. The other is by putting pressure to the optic nerve, which can cause blindness. And that can come in a few weeks time. The syrinx can cause pain and mobility problems, in severe cases paralysis. The syrinx can be left unoperated on if not causing symptoms. If it is causing symptoms, and the surgery is done too late, the patient may be left with whatever permanent nerve damage causes. Both of these very bad outcoms can be prevented by a competent doctor following your condition. and intervening surgically if needed. If this is scary- I know, I've been there, but also, I did not mean to scare you!
Anyone, correct me if I'm wrong!
Don't be afraind of what you don't know and go to a follow up! Your health is the most important thing! You can also go for 2nd or 3rd opinion. I think it's important to find a doctor with whom you get along and you feel you can trust them in long term.
Best of luck!
Fugu is right, follow up. I had no idea what Chiari was when I got diagnosed having an 11mm. But I was also told that if not managed and or watched that one day it could paralyze me.