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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Re: Chiari symptoms
Jul 18, 2008
Hi Dapatt~

Wow, you are very new to this. I can understand why you are in denial. Its alot to bite off and understand for sure. And saddly it is very misunderstood by the medical community. Most Dr's believe that only a large herniation can cause symptoms but infact thats untrue. How did you come to realize you had Chiari? What was the size of your herniation, if you don't mind me asking?

We can live with this for many years not knowing we are experiencing things that are related. Like the dizzy spells you had. I get that same feeling, as if my eyes are filled with moisture and they get very blurry. I used to think the things that were going on were normal and it happened to everyone. Now that I have a name for this, I'm finding out that others don't have these strange goings on as I do. I just never asked.

And laughing, I get terrible pressure from that too, but then thought everyone must have the same. I love a good laugh but suffer for it after!! And laughter is such a healthy thing to do too. So I can comepletely understand what your going through.

You asked about work and many people work and do just fine. But heavy lifting, pulling or pushing can make things worse, so be very careful. Also, if your climbing around, your at risk for falls and that can also be dangerous. So be very cautious. Head trauma can cause more damage.

I had mild symptoms since I was 22. I'm 42 now. About 4 years ago, I was rear ended in my car at high impact and it has been a down hillslide from there. So I treat my body with tender loving care these days. LOL. If its a struggle to do it, I don't. So awareness is good.

You called me the chiari guru. LOL When I was diagnosed, there was such little information here on the healthboards. I know there are others out there who are struggling and wanted to get some support and information out there for them. Its scary not knowing much about all of this. So here I am and if theres anything I can help you with, just shout out!!

Take care

Cindy
Re: Chiari symptoms
Aug 21, 2008
Dpatt,

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,
Niki
Re: Chiari symptoms
Aug 21, 2008
Hi Derrick~

September is right around the corner. Think of the surgery as a step towards fighting the battle and you'll be fine. It is a scary venture but try to focus on something besides the fear for now. I know for me, I had thought my surgery would be worse than what it was. So I was very happy that I fealt so good so quickly. The barrium is definately yuck!! Like drinking chalk. But you made it through that and you'll make it through the next one too!!


As far as lifting, Derrick, your little girl can enjoy her daddy's arms while you sit and hold her. I have neices who I used to always pick up but since I got sick, they wait for me to sit then clinb up in my lap for their hugs. Definately not something you want to miss out on. But on the other hand, when you do have to lift her, try to use your legs to lift, it takes the pressure off your head and neck. Enjoy your little girl while you can. They grow fast!!

One last note. You definately don't need to have alot of knowledge to show support here. I'm sure others as well as myself, are just greatful to have someone to relate to that understands. Its a lonely world out there. You tell people you have Chiari and they just don't know how to react to it because most have never heard of it and they just put on a baffled face. So speaking for myself, the support we can offer here is like none other. Its just nice to have a place to go to share!!

Keep us posted with any updates. You'll be in my thought!!

Cindy
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!!;)

Cindy
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

Cindy
Re: Chiari symptoms
Sep 14, 2008
Hi jellybeans,

Of course I'm in agreement with scout and cindy, but one thing that I can really say is that the chiari headache has it's own special features, and if you describe these features to your neurologist, then he may look a little closer at your scans. I told my doctor that I had intense pressure that would build up in my head whenever I sneezed or coughed, or even laughed, and sometimes it would be so intense that I thought that something was going to pop. My doctor didn't have an answer for that detailed of a decription of a headache, so he had to order my scans, and the scans showed a 1 cm herniation.

So try to be as specific as possible, and maybe you can humble you doctor enough for him to check for Chiari. It's sad, but it really seems that women have a lot harder of a time with these doctors, no one ever told me that it was in my mind. I guess that's just the world we live in.

I hope everything works out for you. And even though I don't know you, I can say with confidence, "I love jellybeans!"

Derrick





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