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Ans And Neck/head/brainstem


mkoven
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just curious how many hear think there may be a neck component to their ans issues--anything from chiari, to cranial-cervical instability, to some other upper--spinal issue. i've just been diagnosed with mild brainstem compression and wonder what role it plays in my many symptoms. mine is from small chiari (4mm), cranial-cervical instability, with a retroflexed odontoid and a small clivo-axial angle, so that I'm pinching my brainstem when I flex my neck. I also have eds and had previousl been told that it was my poor vascular tone that causes the ans issues. now i'm being told that the link to eds is that eds weakens tissues, causing chiari and cervical instability. don't know what to think.

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Hi Mkoven,

There really must be something to this, because I posted a very similar post today. I have a pinched nerve in my neck that was seen on an mri when this first started, right after I had side to side whiplash. I have asked many doctors about could my problems (before I knew I had pots) be from my neck, and they always would say they don't think so, and such. Here is an interesting article on some of the neck muscles. I found it interesting as they related many problems to these muscles. And if you have compression on your brain stem that would only make sense that it would cause problems with the signals from your brain to the rest of your body.

http://saveyourself.ca/articles/perfect-spots/spot-04.php

I definatly think there is a connection.

Suzy

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Both can cause the ANS dysfunction.

I'm told I have all that you mention, but my so called chiari is only 1mm. My problem is more a small posterior fossa squeezing the brain stem along with an enlarged vertebral artery------AND of course we have the instability, and my orthopedic surgeon said it's kinking the enlarged vertebral artery on the right.

The left vertebral artery is missing, so the right one is enlarged making up for the missing left artery. It's congenital.

I also have poor vascular tone, and have the blood pooling, and I think this is poat of the OI issues. The most crippling for me is the difficultly with gravity. It's so crippling to feel like your on the verge of collapse, like you weigh a thousand pounds. It actually feels like the ground is trying to pull me down on some days. It's like a switch turns on, and I'm done------------just done. I'll be functioning one minute, the next I need to rest. Depending on the day, and my strength, a short rest will do to get me by, and other days I'll need to take the rest of the day, or several days.

I also have congenital cervical spine stenosis, as neurosurgeon told me in 2002. He was the first brave doc who had the courage to look outside the box and investigate things further. I had surgery, a decompression of c5, 6, and 7, and the area healed well because he fused and added a titanium plate. Unfortunately, neither one of us knew I has eds, and about six months later the areas above and below it started to become unstable. I think he's a great surgeon, but unfortunately some of the patients he did surgery on had EDS without knowing it, as they weren't diagnosed yet. Some of them developed complications. It didn't matter what surgeon worked on them, if they didn't know they had EDS and what precautions to take, complications can happen. I have a close friend of mine who had abdominal surgery, she ended up having awful complication with the wound, but eventually it healed. This is when I told her she should get checked for EDS. She did, and found out she has it.

I don't know who the responsibility belongs to, but surgeons need to be educated on EDS, just like other co-morbid conditions like respiratory, or heart disease. It's not fair to the surgeons going in there blind, and it's not fair to the undiagnosed EDS patients who don't know why thier wounds won't heal.

I think you should find out by your docs if your ANS dysfunction is secondary, as some of the treatments for your POTs can aggrivate your other conditions. i.e.----------->drugs to increase blood pressure could work too well, and cause complications in someone who has block CSF flow, and increased pressure on thier brain. Very cafeful management needs to be in place for patients who have CCI, Chiari, blocked CSF flow, spine instability, and EDS along with their ANS dysfunction. However, I'm finding out this isn't always possible, as this is way over the heads of a lot of doctors. Unfortunately if you know more then they do, they can be very rude and abusive blaming the patients accusing them of all kinds of ugly things.

I'm in the midst of trying to get careful management with neurological care, but they don't get it. I have a nice orthopedic surgeon, but I still need careful neurological management. I don't think my issues should be dismissed as benign much longer-------------especially with the right side of my head feeling like it's going to explode with the slightest strain, or too much gravity--------------and now I have the buldging in my neck on the right side near my clavical. No explanation for this...........Hmmmmmmmmmmm. I can bet the Cleveland Clinic will not have a clue on this. If they get arrogant, rude, and dismissive with me, I'm going to have to give them a very stong message for all of us. Tune in later for this. I'm not at all worried about looking any dismissive surgeon on this square in both eyes and let them know their missing the ball, and they need to take a step back and learn from their patients, as we employ them----and we can fire them. Unfortunately they usually fire us first. But that doesn't mean we can't go out kicking and screaming. I dare them to put "a psychological issue" in my file.

Your case sounds very simular to mine, and I pray you don't have the same type of issues I have had getting the proper medical care. I have another friend who I have talked with many times on the phone who has almost the identical issues we have. She was a commercial artist in Calf. who is now on disability. She has been all over the country, and still struggling to find the right help.

Maxine :0)

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I echo everything Maxine posted.

I wanted to add though, in re to finding health care professionals that are knowledgeable & not intimidated or annoyed by the informed pt, I have learned it is quite helpful to post of forums of specific conditions seeking doctor and posting a criteria of sorts.

I have found excellent doctors this.

I do have to travel quite a bit to see them and because Ava has many many health issues, we see many.

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