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Brain & Nervous System Disorders Message Board

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Re: Chiari symptoms
Sep 12, 2008
Hi Derrick~

The count down is on!! Hopefully soon you will be getting some resolve to all that you've had to deal with and you'll be feeling better real soon. As far as the headaches, I can comepletely sympathize with you. I have been in a bad way these day with the pain and pressure.

Up until this point, I have refused narcotics for pain because I don't want to get dependant so I've taken none. I was prescribed neurontin which is for nerve pain. It doesn't help. Neither does tylenol. I have been lucky enough to have been able to manage my pain by laying down before it gets out of control. If I stay up when the pain level is increasing, I'm done for and can't get rid of it even laying down.

I have found using Ice packs do helps. From what I've learned, the brain can only feel one sensation at a time. It can't feel pain and cold at the same time. So this is very helpfiul. But of course, once you remove the cold and you become normal body tempature, the pain does return. I have a freezer full of a variety of ice packs so I can alternate them. I even bought ones that strap on, to be used on the body with velcro. I wrap them in various positions on my head and neck. My family tease me about how foolish I look and even take pictures just to give me a hard time. My response is at this point, comfort is more important than beauty.:D

For the past month, I've really been in pain. Rainy stormy weather does me in and in the south east, we've had too much of this all summer. I finally decided I just can live like this any more, lying down all day and it affecting my quality of life. So when I get really bad, I've used oxycode, which the hospital gave me after my surgery. They're only 5mg and really just take the edge off, but they definately don't make me pain free. But I've had to do something.

So I went to my PCP on Tuesday to discuss this with him. I told him I'm at the point where I need help but expressed my fear of dependancy. He agreed comepletly that I should ony use the oxy in an emergency bad day level. He gave me a high dose of naproxin which is an anti inflamatory and told me to take this consistantly and in a month, if it hasn;t worked, come see him and he has some other tricks up his sleeve.

It has helped some, again taking the edge off. He said that I will most likely have to deal with some level of pain but if we can lessen it then we should be happy with that. So the last few days, that has been going ok. This afternoon, the pain hit me hard!! I tried to hold out but in the end, took an oxy. My hubby called me from work and I told him I'm in a bad way and sure enough, he said a storm was heading our way. So I was glad I decided on a pain pill to get through.

It's really a tough thing to deal with Derrick. And at times we cope better than others. If after the surgery, your still having alot of pain, find someone who you trust, to work with you on managing your pain. I have alot of faith in my Dr and am really glad he's working with me on this with the same feelings I have about narcotics.

But for you, my friend, I have high hopes that you will be the lucky one to go through the surgery , have a speedy recovery and are able to say in the end it was successful and you feel so much better. I'll be thinking of you on that day and will be sending you my wishes for good health to come.

Please keep me posted when your up to getting on the PC. I'll be looking forward to hearing from you soon. Best of luck!!;)

Re: Chiari symptoms
Sep 13, 2008
Hi Jellebeans~

Your question is definately not a stupid one. I remember when I 1st learned about chiari, I worried about the same things. The mortality rate from chiari is rare. Most deaths from chiari are caused from patients who have sleep apnea and are heavily medicated with opiates (pain meds) which can lead to respitory arrest. Chiari does affect our infoluntary functions such as heart rate and breathing so that is where the problems lie.

The problem with leaving chiari untreated is that it is pressing on our nerves, causing all of these symptoms to occur. If left untreated, it can cause permanant damage. TCI (the ChiariInstitute) which treats Chiari and its related disorders, say that it is best to have intervention within 2 years of the onset of severe symptoms for the best results of recovery.

From what you've discribed, you should definately look into the possibility of chiari. Alot of people experience worsening of symptoms after child birth and a head trauma ( bumping of the head). Did you have an epidural during your labor? I ask you this because the changing point in my life was when I had a spinal tap. When the pressure in the spinal fluid was disturbed, my symptoms increased. Also, chiari patients are warned not to bear down to have a bowel movement and to use stool softeners to avoid this. Well, lets face it, in child birth theres alot of bearing down. My symptoms began in my child bearing years, in my early 20's. Though they were minimal, I had alot of strange tingling, I now know that my births and epidural probobly got things in motion.

An MRI is the only test to show chiari. When mine was done, my MRI said normal, no findings. I had copys of my MRI and compared mine to a normal brain and one with chiari and found my own diagnosis. So many people go undiagnosed for years because Dr's don't know about it and don't look for it on an MRI. Unless it is an extreme herniation, it gets unnoticed. Smaller herniations can certainly cause the symptoms your describing.

I feel so badly that you've suffered for so long. And I do understand your frustration with Dr's thinking your a cronic complainer and they can't find anything wrong. I went through this myself and they made me feel like I was crazy. It was horrible. But the daily pain you feel I only know so well!! And the cronic fatigue too. I was forced to give up my buisiness do to all of this. This is real and know one will truly understand unless they walk in the shoes of a chiarian or someone who lives in cronic pain for that matter. Being 31 and feeling 100 is something I know too well:D

If I can answer any questions or help in any way, just shout out. You definately need some answers after so long you've suffered. I'm here if you need anything. But what you really need is to find a Dr who will listen. ;)

Take care


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