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Brain Stem stuff needs to be taken more seriously?

Guest Julia59

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Guest Julia59

I was just thinking the last few days about what Dr. Bolognese said at my recent trip to the Chiari Institute.

He confirmed Dr. Heffez's diagnosis of the congenital cervical stenosis/chiari. But he also said cervical/cranial instability----AND THAT A LITTLE PIECE OF MY C1 LOOKED LIKE IT WAS RUBBING ON MY BRAINSTEM.

I don't know if traction would be the right thing---if my cervical/cranial area is so unstable---especially if I do have EDS.

Wouldn't my brainstem get injured? That is my fear---as this would cause autonomic failure-----or more serious issues. If I already have compression and now added friction from something rubbing it-----------i'm thinking I should be NOT MOVING MY NECK AT ALL!

Here's the thing-----------lately, just being upright, weather in be sitting or standing is too much on my upper spine/neck.

I have been wiped out all week----probably due to the heat. Temps in the 80s and humid in Toledo. I just can't handle heat at all. Just walking from a parkinglot to a building is too much. I can't believe I made it four five hours at the Kerry/Edwards event. My son and husband were fanning me and spraying water---plus I had a small area of shade in additon to a hat. Otherwise, I don't think I would have made it.

I couldn't believe I made it through because the heat just wipes me out. Maybe i'm paying for it now---as I have not been doing well at all since the event on Aug 1st. I have been in and out of my car a lot this week going in and out of buildings. The car is so hot when I get into it before the Air conditioning cools things down. The sun is the worst part for me. I can take the heat somewhat if there's shade------no way in the sun.

I'm sorry to ramble on----but the brainstem is nothing to fool around with. And i'm gathering that issue alone would make heat intolerable for me. I have been so wiped out----I don't know anymore. I called into Dr. Bolognese and left a message. I have a lot of instability period.

The same thing with my joints----unstable all over and getting worse. Now when I walk my hip clicks in and out. Two days ago my where my arm and elbo come together was slipping if I put my arm straight. I had to keep my arm slightly bent. How could this stuff be happening so fast? I know I had very flexable joints in the past, but this is getting crazy.

I wouldn't be as concerned if it was my cervical spine only, but this cranial/cranial instability---brainstem involvement is something that has to be watched a little closer---don't you think?

Especially scared tonight, because as we drove home from my brothers house the pain in the back of my head was nothing I have ever felt before. Felt like a giant razor blade just cutting through my lower brain. NO KIDDING----THAT's WHAT IT FELT LIKE!

Julie :0)

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Julia, It's not likely that you'd actually feel pain emanating from your brain stem, as the brain tissue itself does not have the type of nerve endings needed to send those signals--hence, they can poke and prod at your brain with you fully awake (if you've ever watched when the do mapping of brain areas, they do exactly that). Here's a good description of the brain structures w/ good graphics and cross links:


The structures that DO have nerves that can send pain signals include all the musculature that holds up your skull, wraps around the skull, the skin, etc.

I always remember Lloyd saying things like "when you hear hoofbeats, look for horses before looking for zebras". (If you know who Lloyd is, you're a old veteran...yeah, I'm calling you old! I'm old too! ;) So, when you feel head and neck pain, first look for the obvious--nerve issues or muscular spasms. Since you've had your neck muscles cut (me too, as you know), spasms will always be a possiblity. Mine don't always give a pulsing sensation, but feel like a stabbing or ripping sensation.

Additionally, it's more likely that pain you're feeling the result of a nerve root irration than brain stem rubbing on anything--not that the brain stem is not an issue for you. See NIH/NINDS for chiari information, as the symptoms from a brain stem compression would be listed here:


The most important pieces to take from the NIH page is that the headache located predominantly at the back of the head, but intensified upon movement/straining/coughing. There are also eye symptoms--you may recall that our mutual friend Dorothy has these. You would typically have elevated ceberal spinal fluid pressure that when treated may help alleviate some symptoms ("may" is really being loose here--my friends who've had meds, shunts and surgeries often have limited relief and have required multiple revisions). So, for example, you'd feel really good after having a spinal tap. Also, I don't ever recall Dorothy describing her pain as stabbing or slicing in nature--you could always write and ask her--her email is the same as it was when she spent more time on NDRF's forum. Another friend described hers as throbbing and made her head feel heavy...and she vomitted all the time too. Before her first surgery, she had the classic eye problems with involuntary downward movement. She later required a shunt, which resolved all her problems.

Have you tried putting your hard brace on for bit? Does it help at all? When I have really bad headaches, that's the first thing I do, even before looking for tylenol. Hope you feel better.


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I agree that it sounds as though they should look into this more and figure out what would be the best solution for you. I'm with you on the heat thing...I just moved to FL (talk about humid!!) and walking around outside is tough. But at least you have a good memory of the Kerry/Edwards event, sometimes it feels good to know that you CAN do it ;)

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Guest Julia59

Thanks Nina and Jessica,

Doctor Bolognese said my spinal fluid is not too bad in the Anterior part of my cervical spine, but posterior is slow according to my MRI. They did a type of MRI that also measures spinal fluid flow. They put this thing on my finger that does it I guess. Some of this stuff is magic to me---how they would ever measure the flow of spinal fluid like that........?

I have headaches in the back of my head all the time, but I am so used to them. When the cutting or jabbing pain started---it gave me a little jolt of fear. And the pain does get worse with movement/exertion---straining and so on. I feel a little better today, but the usual pain in the back of my head is worse, and my head feels like i'm under water. Nina, I think your right that a lot of nerves can be irratated up there causing all kinds of fun for me. One of the things I never understand is how horrible my right clavicle/shoulder/arm and upper back feel. My right arm is useless because if I use it for anything---even typing---I pay a big price.

I also notice my balance is getting worse--like my feet can't make contact with the floor---or i'm going to fall backwards. My legs feels very heavy. This is all worse with exertion. If I lay around and do nothing----I feel almost normal---unless I lay down after over doing it---then it takes a while before I feel normal. I don't nitice any eye movement other then the usual twitching or vibrating sensation I get which usually comes with the pain----the more pain i'm in---the more twitching.

This morning my POTS symptoms were pretty bad, but this afternoon, things smoothed out a little. Maybe the heat is making things worse. I'm going to contact Dr. Bolognese and tell him my concerns about traction. My neck is so unstable up there! It gets stuck all the time now---even when I just move it slightly back. I feel like i'm whining here----but the things happening to me lately are so weird. All this stuff with my joints----everything, just seems like a bad dream.

Jessica, I tried the hard collar, and it does help with some of my upper back/clavical pain, but causes more pain at the base and back of my head. Every move I make there's popping all over my upper back. It is so hard to describe. I've never been good at describing my problems. You should see me in Dr. Grubb's office-------God----I can't articulate my thoughts well at all about all of this.

This morning Dr. Davis called me---he the psychologist that Dr. Grubb sends some of his patients to if they want to get a little help coping with all the crazy stuff Dysautonomia has to offer. I could not get my words out straight in my conversation with him. He called and asked about the support group flyers that I take to both Dr. Grubb and his office. My words were so jumbled and slurred, I was so embarrassed. He was so kind and understanding---and not at all patronizing.

It's got to be the heat..............

I'll check out that link Nina. Thanks so much for the information....

And yes I remember Lloyd--LOL---Short and to the point........LOL..

Julie :0)

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