I had 2 MRI's in 2007 - both revealed Chiari 1 Malformation. At the time, we were looking for the cause of something completely unrelated. No one discussed the Chiari with me, told me to see someone about it, or even told me I should keep an eye on it. Now, in 2012, I'm having neck and head aches, dizziness, nausea, balance problems, trouble reading and concentrating, vertigo, and many other symptoms, which I suspect are related to the Chiari. Seeking an appt with Neuro Surgeons at University of Michigan, but need a new MRI first. Will be having the MRI this week. I'm scared, because the symptoms seem to be getting worse, very quickly - within the last week. Wondering whether anyone knows generally how long it takes to be seen? Is this disorder, with symptoms, considered a priority?
I hope you find a neurosurgeon and get relief quickly! I think it really depends on where you go as far as the time it takes to be seen, how long it will take you to get into the hospital for surgery. I had a similar background - my symptoms bothered me for about 9 years, then I got them looked at because it was getting worse quickly. I was diagnosed on 10/18, and had my decompression surgery on 11/23. I think that may be a pretty normal turn around...but like I said I am at Ohio and did my operation at Riverside Methodist Hospital here. I hope you get relief soon!!
Thanks for the quick reply Katrina. Are most neuro surgeons well versed in treating this disorder? Or do we need to be seen by highly specialized surgeons? I ask because I've seen online that there are several "Chirari Centers" around the country. I also ask because as I get more frightened - and it's getting worse by the minute - what I really want to do is drive myself to the nearest ER!
I seem to have hit the jackpot where rare diseases and disorders are concerned. I also have a very rare autoimmune vasculitis disease. I've been through a lot in the last year and a half, and I'm seeing rheumatologists at the University of Michigan. I feel like all of my care should be done there, so that they can coordinate, but I'm not sure I can wait - did I mention I'm scared?
You're welcome! I remember feeling that SAME way about 5 months ago! Sad thing is...the ER can't help you. It's all about patience and ensuring that you get the right doctor. One that is caring, dedicated, and willing to make sure your operation is successful. Age doesn't always matter with neurosurgeons either. I had a younger surgeon who has had more success than many of the older ones because he is more well-accustomed to the more modern operations. You just have to 'interview' the surgeon you meet....see if it's a good fit. Also do some research into the ones around you - you can see reviews online and see if they have any pending malpractice suits. It was easy for me to find a neurosurgeon who was great because my mom was already a patient at a Neurological Clinic here in Columbus for MS so I was able to quickly see her neurologist and she referred me to the neurosurgeon in the same clinic. You can visit any neurosurgeon who specializes in brain/spine surgery. If they aren't comfortable with Chiari they probably won't take you as a patient...so you don't have to worry about seeking someone specific out.
I've seen a lot of those too. They are great because the care there is centered around Chiari only, but I didn't go to one of those. WOW - with that other disease too it may be best to keep all of your care in the same place. I know my Mom does that with her MS and recently found cancer....
It's natural to be scared, Chris. That only means you're human and not made of steel. :) Just hang in there. Everyone on this site is REALLY nice and is here to support you!
Your symptoms are classic Chiari symptoms. Overtime gravity, age, and wear and tear makes the pressure worse in your head. Chiari does progress for most people. If you have a bad headache have insurence and need to go to ER do it. I wish I had before my diagnosis. You will at least get some relief for the headache. Do you have a nuerologist or a Primary that could give you something for the headaches? If you do Zomig works wonders for me. It is a migrane med.and helps me tremendously. It does make you sleep for hours when you take if for a headache. Sometimes I can head one off and take one or a half of one when I feel a headache coming on with arm pain, neck pain or dizziness and it doesn't make me pass out but stops the headache from getting unbearable. Just know you are not crazy, you deserve to get help and answers. I will keep you in my prayers.
I have some darvocet, vicodin, and percocet at home (leftovers from various past ailments). Last night I took a darvocet, and that did the trick. The pain is tollerable if I take motrin, which is what I will try to do during the day. However, the pressure, balance, and dizziness issues are harder to deal with. Sometimes I feel like I shouldn't be driving - only I don't know it until I'm actually driving. Then I feel like I'm not comfortable with the whereabouts of the cars around me. Like, when I check a blindspot, I don't feel confident that I know if the guy behind and next to me is right there, or maybe a lane over. Does that make sense? I don't know whether turning my head is causing dizziness, or if it's eye symptoms of some kind.
Several people here seem to be on really strong pain meds. Again - that's scary! Not the meds themselves, but if I'm miserable now, what kind of pain could I be in for????
My MRI is scheduled for this Friday. I'm sure results won't be ready until Monday, then I have to get a referral...... I'm sure you all know the drill....... I can't stand the thought of not even being seen by a specialist for weeks or months. If it continues to get worse, maybe I'll have to come up with a plan B.
Some people heat helps and others cold helps. I have a neck pac that goes in the microwave that I use when my neck hurts and is stiff. Cold is intolerable for me but others swear by ice. Grampa's Garden sell pacs like the one I have online. Everyone is different with Chiari for the number of people on here there are others that have the surgery and find alot of relief. You're in the worst part right now symptomatic, looking for help answers, waiting ect It's all frustrating. As far as driving I have all the extra big rearview mirror and blindspot mirrors that can fit on my car. It really helps and gives me piece of mind. All your experiencing is real and don't let anyone convince you of anything different.
ChrisG said:
I have some darvocet, vicodin, and percocet at home (leftovers from various past ailments). Last night I took a darvocet, and that did the trick. The pain is tollerable if I take motrin, which is what I will try to do during the day. However, the pressure, balance, and dizziness issues are harder to deal with. Sometimes I feel like I shouldn't be driving - only I don't know it until I'm actually driving. Then I feel like I'm not comfortable with the whereabouts of the cars around me. Like, when I check a blindspot, I don't feel confident that I know if the guy behind and next to me is right there, or maybe a lane over. Does that make sense? I don't know whether turning my head is causing dizziness, or if it's eye symptoms of some kind.
Several people here seem to be on really strong pain meds. Again - that's scary! Not the meds themselves, but if I'm miserable now, what kind of pain could I be in for????
My MRI is scheduled for this Friday. I'm sure results won't be ready until Monday, then I have to get a referral...... I'm sure you all know the drill....... I can't stand the thought of not even being seen by a specialist for weeks or months. If it continues to get worse, maybe I'll have to come up with a plan B.
I'm sorry to hear about your dad. There is much debate about whether auto-immune diseases are familial. You really have a strong family history of auto-immune and Chiari disorders! This is very frightening to me. My son was just diagnosed with type 1 diabetes (which is also auto-immune related). I can't help but think that was my fault, and that's difficult enough. I can't allow myself to think I may still pass other things on to my kids.
I have Wegener's Granulomatosis. It affects the small blood vessels. Mine seems to be localized to the "head and neck". It affects my eyes, nose, sinuses, ears, and throat. I have been treated for it, over the last year and a half. It took 4 years to get a diagnosis. In the process, I had the brain MRIs in 2007, which revealed the Chiari. The propblem now is, some of the symptoms of Wegeners overlap with Chiari symptoms. Wegener's can cause headaches and inner ear problems, which can cause balance problems, dizziness, vertigo, etc. I only realized that there was something ELSE going on, when I really began to feel that the WG symptoms were much improved, and yet, I began having these neck and head aches (back of my head and all over, whereas the WG headeaches were sinus related), with increased dizziness, etc. I somehow remembered the old MRIs, and began digging.
There was a cancellation, so I was able to move my MRI appt up to this evening, which I'm very happy about. appointment this evening for the MRI!