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Brain & Nervous System Disorders Message Board

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Re: Chiari symptoms
Aug 21, 2008

Hello, I was diagnosed with Chiari 10 years ago when I was 18. I had my craniectomy in 2005 and did GREAT until I was in a car accident and was rear ended. I was in my husbands brand new truck (not even 2 days old) and she was going so fast that she actually ended up with the front of her car under the truck past the rear tires. It was not a fun time. Since then I have not been able to work and I am still fighting to get disability. I was a social worker and was in the field driving a lot helping people who where disabled and on medicaid.

I get a lot of pressure when laughing, bending, stretching, etc. Even when I tilt my head to try and put on my makeup I get pressure build up in the back of my head where the skull was removed. I still can not lay flat on my back at night and I have found that when the pressure is too much I will sleep in a recliner and that helps ease it some. I do not regret the surgery in the least; my husband does not think that I would be here without the surgery; the pressure would build to the point my blood pressure would sky rocket and my nose would start to bleed. I even stroked out one time from the pressure making my blood pressure go up. This is not good for the body. The Dr stated that the minute they opened the cranium my blood pressure dropped and from that day since I have not been on blood pressure medication. It is amazing what can and can not be related to Chiari. I would be careful with straining; this can lead to problems. I fell going up the stairs (yeah, going up) because my stability is poor right now and I caused a small bleed on the brain and strained my occipital nerve. So be very careful!

I know that this may sound cruel but I got a good laugh, so I hope that you will too........ The last time that I fell and had the bleed on my brain my husband went and bought me a bike helmet as a joke. I laughed so hard that I did give myself another headache. Don't get me wrong there are days when nothing is funny and I whine but there are times that you just have to see some kind of humor (even if a little twisted). It can help you out a lot.

( removed ) Just make sure that you stay up to date on things. I keep a daily pain journal to help me and my Dr figure out what has to do with Chiari and what does not. This has really been helpful. And always listen to your body, it will tell you if you are doing something you should not or if something is not right. Trust yourself and your judgment and do not push yourself; it can be overwhelming at times!:)

Take Care,
Re: Chiari symptoms
Sep 14, 2008
Hi Jellebeans~

It is heart breaking to hear how we can be treated as human beings by the medical profession. And its horrible because so many people like you, give up and are left dealing with this all alone. Your not alone. You have us here and we understand!!

Let me tell you about my 1st neurologist appointment. Of course you wait so long to get in so when you finally get to see them, theres hope that you'll get help. At this point, I had no tests done and had only seen my PCP. This guy ran some blood work and then handed me a script for lyrica. I asked him why he was giving me this and he said for the pain. Then he danced around the idea that I had fibromyalgia.

I asked him how he could diagnose me until he ruled out other diseases and asked him to do an MRI. He said that theyre costly and he wouldn't waste money on them. I became so emotional and started to cry. He slammed his pencil on his desk and told me to go see a councelor. Because I had shed tears, he was blaming this on depression. It was horrible.

But when I got out to the car, it got worse. I was ranting and raving about this guy and my husband calmly looks at me and says "maybe he's right. You have been under alot of stress lately" I was so mad and hurt, I wouldn't speak the whole ride home. Now that I have a diagnosis I;m finally believed and its such a relief. Of course, without the MRI, I never would be diagnosed. I never gave up and found another dr. I fired that 1st guy that day:D

But you need a place to let this out and I can understand how you keep quite for your partners sake. But what about you? Holding this all in is not good. Come here and vent when you have to. Thats what these boards are good for.

As far as the MRI, I looked up on the internet a brain with chiari and printed it out for comparison. A normal brain, in the back sits up high, straight across. A chiari brain has tonsils as they call them. The brain is crowded and the brain is being squeezed down into the spinal cord so it kind of slopes at an angle. The tonsils are in turn, putting pressure on our nerves in the spine. When I compared mine, I took a ruler and could see a definate slant. I hope I've explained it so you understand. If not, just ask and I'll be glad to answer any questions. If you notice something with your own eye, you can go from there.

Let me know how you make out

Re: Chiari symptoms
Sep 17, 2008

I forgot one more quick note. If the brain is being pulled down and your brainstem is looking flattened, you could have a tethered cord. Theres not alot of information out there on this. For me, I had alot of pain in my legs. It fealt like I had elastic bands tied around my legs and they just didn't want to move right. I had alot of pain and weakness in my legs as well. Also severe bowel issues and incontinence too.

When they detethered my cord, the surgeon said it was severely tethered and its like cutting an elastic band and the brain springs up, not being pulled anymore. Since my surgery, my bowel and urgency to urinate have improved greatly!! My legs move like normal legs now. Its amazing how much it did help. My pain in my legs have improved too.

I still have alot of unresolved issues. My head pain is still bad and I get stinging burning pain all over my body. So I know I need more surgeries in my future. But theres hope!!

Take care


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