Been reading up on this disorder called, "Arnold Chiari Syndrome" Read On

Boy, you miss a day you miss alot. Okay, I admit that was pretty tacky. Please forgive me, especially you Gina.

Please however do not dismiss the larger point I tried woefully to make and that is that medical science is not infallible; that more than one discipline can yield valid information, useful information, necessary for one to make an important decision like brain surgery. If medical science would acknowledge other valid approaches and know when to consult with other professional disciplines, there would not be much of a debate here. That however is rarely the case. Just for a moment, please consider the possibility that my concern might be valid, that this condition just might be more related to chiropractic than to medicine. If that is true, it would be a tremendous shame not to at least explore that possibility before brain surgery.

To round out my edit of the original post, for all posterity I would simply like to point out the similarities between the definition ACS and what is nothing more than an upper cervical disorder involving the first vertebrae:


Description of ACS:
"The disorder known as the Arnold-Chiari Syndrome is a defect in the formation of the lower area of the brain stem. The malformation may take the form of having too small a medulla or pons, the brain stem being displaced, or some of the nerve fibers falling into the spinal canal and causing blockage. This defect in the formation of the brain stem may prevent brain fluid from passing freely from around the brain into the spinal canal. The brain stem is located between the cerebrum and the spinal cord. Typically, the cerebellum tissue extends into the spinal cord region. Because of this defect in the formation of the brain stem, which may also involve the pons and the medulla, an obstruction may prevent information from passing freely from around the brain into the spinal canal. The information that the cerebellum transmits to the body is in three areas: maintenance of equilibrium and balance, regulation of muscle tension and coordination."


Description of upper cervical disorder:
The Atlas bone is located in the lower area of the brain stem, can cause the brain stem to be displaced, can prevent brain fluid from passing freely from around the brain into the spinal canal, and being a type of obstruction may prevent information from passing freely from around the brain into the spinal canal[/b

Once again, I humbly apologize.

Hank

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

Hank, I don't think it wise to discount Arnold Chiari Syndrome/Malformation quite so easily. From what I recall, these things need to be considered:
1. General Chiros are instructed NOT to do neck manipulations on anyone with a Chiari Diagnosis ... which is quite rare considering the variety of conditions that chiros believe they can influence! They have learnt to be cautious as the brainstem/crimped vertebral artery is involved.
2. Too many mix up NUCCA's with general Chiros.
3. I was only ever able to find one link to a NUCCA and Chiari (case study) and he only talked about mild Type 1 (not the more severe types 2, 3 or 4). So there's hardly any reference, or evidence in the way of case studies, about in the NUCCA field.

And then I wonder...
If the brain stem has fallen down due to a malaligned C1, then gravity will already have caused problems. Altering the C1 may well ease the vertebral artery/alignment issues ... but would it shift pressure onto the brainstem? (I wouldn't have a clue... but I'd sure want my NUCCA to be able to tell me first). Also making it hard is the fact that Chiari diagnosis is very much hit and miss. Some live with this malformation without any symptoms... and equally some get diagnosed when the Chiari is incidental (not the key cause of symptoms). It's therefore not as cut and dried as many other conditions.

Anyway, that's my take on it all.
All the best for your visit Hank.

Lee

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

If you want to learn more about this there is 'A chiari' center at I believe North Shore Jewish Hospital in Long Island (new York). This is the only center devoted to this synrome and they do surgery for it there. You can also look under 'Heritable Connective Tissue Disorders' and find some info on all of this.

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

Hi Lee,

This was my way of opening up the possibility to some that this condition just might be less mystifying than medical science would have us believe. I know of no official stance that medical science has taken on even the possibility that upper cervical disorders could cause some of the conditions that they obviously do. I know of one instance of a neurosurgeon who, rather than referring a patient to a trained upper cervial chiropractor, instead through surgical means removed a portion of a displaced atlas bone that was causing a patient pain. For the patient to have exhibited that kind of blind devotion to medical science rather than simply drop in to the local chiropractor tells me that folks would be wise to broaden their perspectives to solving their physical problems. I would be very interested for someone with this diagnosis to pay a visit to a qualified upper cervical chiropractor to see what he or she might say. I think you will agree that the description of ACS I found in my search sounds an awful lot like a chiropractic problem.

To try to help illustrate my point a little better, here's a couple of parallel stories from history.

My mother has had balance problems all her life. For many, many years she had pain, headaches, etc. When she was in her teens, they put her in a sanitarium in New Orleans and came to within a few hours of doing a frontal labotomy on her. As the time was drawing near, good old "Uncle Gurney," an MD in his own right, showed up, told her to gather her things and swept her out of that place. Of course that was in the '30's. A lot has changed since then. Right? Maybe less than you think. My mom's pain and headaches resolved after a course of physical therapy on her, you guessed it, neck, several years ago. Now she just has the balance problems. To look at her it is inescapable to the ordinary eye that her neck and spine are crooked as a by-George. About 20 years ago some medical doctor gave her a diagnosis of "Cerebellar atrophy." Ever heard of that? Probably not. Ever since, she has worn that diagnosis like a badge. Now she knows what's wrong with her. She tells everyone she's got "Cerebellar Atrophy." I believe she has no such thing. She's got a crooked neck from falling off a horse when she was 13 years old. But can I convince her that her diagnosis might be wrong? Nope. Fast forward to 2002, my wife's neurosurgeon, a world reknown fellow who studied under the best in his field, couldn't notice what is obvious to any layman who might now look back at the MRI's taken before her surgery. In the pictures her neck is in the shape of an "S." Her atlas is blatently tilted in two directions. Now I ask you, why could this world reknown surgeon not noticed this obvious disorder? I cannot answer that. But instead of looking at the obvious, he suggested surgery and gave us a reasonable chance for success. As far as I'm concerned, that surgery was today's equivalent to a frontal labotomy in the 1930's. It made no sense to me at the time; but we blindly followed the advice of this brilliant mind who turned out to be dead wrong. It's just too bad old uncle Gurney wasn't around to tell my wife to, "grab your things, we're getting out of here." Actually, that should have been my job. The more things change, the more they stay the same.

These are just two examples of how far off course we might find ourselves if we blindly follow the opinions of anyone, MD, chiropractor, it doesn't matter. This is why I say that you are your own best doctor; everyone else is merely a consultant. If I had simply followed my own instincts, my wife's life and therefore my own, would be completely different today, different for the better.

I do not say that Arnold C. wasn't on to something when he came up with this diagnosis. I do say that before we take that diagnosis as gospel, we ought to do our own diligence. It might just be another "cerebellar atrophy." Note I said, "might."

Thanks for the post, Lee. And thanks for the warm regards and prayers.

My best,

Hank

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

Hank, I'm with you about being your own Doctor. In fact, I even go further to say that when it comes to Menieres, we don't even need NUCCA's... But having said that, 'Cerebellar atrophy' is nothing like 'Arnold Chiari Malfunction'.

Cerebellar atrophy reaks of a structural problem that has crimped off the flow of the body's systems. This is not from anything more than knowing that 'atrophy' means shrinkage... and things shrink when they are starved. Attempting to shift the C1 therefore makes a lot of sense. Besides, there is nothing to lose, cept a little money. (I'm so sorry your Mum had to live with the suffering). But in the case of Chiari, the brainstem has slipped down through the C1! To my way of thinking, that means a part of the brain is actually within the joint being adjusted! And (apparently) it's not guesswork: it can actually be seen on an MRI. I believe that requires 'due diligence' before any adjustments.

So I'm specifically referring to the condition mentioned in the title of your thread as I know there are people on this forum who have Chiari. But as far as your other posts go, I think it's wonderful that you are opening people up to a very promising alternative.

Lee

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

this guy will never stop. ???

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

Ok to clarify what I mean I will say this: my sister's son was just diagnosed with Arnold Chiari Syndrome within the last 2 months... he is 9 years old and will be having major surgery next week.... also my sister's father in law died from complications of Chiari Sydrome... so poking fun in any way shape of form regarding this and suggesting this atlas at every single post for anyone that has anything going on other than needing an atlas adjustment is starting to get annoying. you need to just stop it.. you gave some very good information on many many many many threads and if ppl are truly interested they will look into it henry.
I'm sorry to sound so harsh but i cried my eyes out when i read your stupid post. just please back off ok?? thanks.

Gina

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

mnme,

I agree with the tonsils falling through. I'm not sure if a nucca could do anything about this. I am considered borderline chairi, meaning that its not causing me symptoms.

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

My next door neighbor's daughter has chiari, and surgery was done as soon as they found out. She actually was in danger of damaging her brain from doing anything too physical, because it had slipped down so far into the area where it shouldn't be. and it was waaaaaaay down there. They put it up where it was supposed to be and reinforced the space it was falling through.

This situation was apparently congenital.

The thought of subjecting that beautiful girl's squished brain to chiropractic manipulation instead of surgery fills me with horror, frankly.

There is no treatment that is a panacea. I know some people don't believe this, so it is kind of pointless to say it...but I'll say it again. There is no treatment that is a panacea.

Panacea would be a nice name for a cat, though.

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

Hank, out of respect for Gina, perhaps you could consider deleting your post. I know you are well meaning, but it strikes me that your post here discredits the very valuable information you are sharing about the C1 in other, more suitable threads... and that's a shame. Chiari (particularly levels 2, 3 & 4) is a whole other kettle of fish.

Gina, I'm so very sorry to hear about your nephew.

LOL Thornie... yeah Panacea is a great name for a cat.

Lee

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome"

And that’s just the problem, Hank. You are being too single minded and need to be more cautious in the advice that you are giving out on this forum.

If you feel that you know what causes Meniere’s disease, then you should submit the results of your research to a scientific publication. I am sure it will get published as long as your proof meets the rigors of the scientific method.

In the meantime, you should refrain from poking fun at people who have serious health concerns. A lot of us have suffered terribly with this disease and do not appreciate being ridiculed.

Joseph

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

Hello all,

Please see my edits in the first post above.

Humbly,

Hank

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

Hank, I do appreciate your editing the post and accept the apology... I really just wish that you would maybe find a board that focuses on NUCCA and ATLAS and chiropractic care and maybe post all your valuable information there. We here have heard all the miracle cures out there, and don't get me wrong.. I am sure that many have benefited from what you have said and have to offer, I just think that it is time to realize that alot of ppl are getting annoyed by your continuous posts regarding chiropractic care being the answer... please try to see where I am coming from.. although you did edit the post regarding poking fun about the post regarding Arnold Chiara syndrome... you still continue to post about chiropractic care, etc.

I am not trying to start any fueds here, and I do not want to have solari come on here and stop this forum.. but I was PM's by quite a few people after I posted to you stating that they were tired of hearing about atlas adjustments,etc and just quit posting because they know you will post about this subject again. Like I said earlier, you have posted many times regarding this and I know many are interested.. just try to let it lie now. Thank you.

Gina

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

Well, I am very glad for my own sake that I did not see the original post if there was any joking about Arnold Chairi malformation. This is a very serious issue that does not deserve to be slandered, and I am glad it was edited so I did not have to be exposed to it.

A MRI to rule out eustachian tumors revealed that I have Arnold Chiari Malformation category 1. At the time I had the MRI, the only symptoms I was having was with my ear, but since the diagnosis, realize that some of the little things that I just associated with aging are a result of the Chiari. Although this may be semantics, I have never see this condition referred to as Arnold Chiari SYNDROME, rather, Arnold Chiari Malformation. Also, it is my understanding from the neurosurgeon that the skull in a Chiari patient develops too small to accommodate the lower portion of the cerebellum. The lower part of the cerebellum which is referred to as "the tonsils", then begins to encroach into the spinal column and brain stem. There is no malformation in the brain stem. And, it is not the brain stem itself that becomes misplaced or falls, it is the lower part of the cerebellum which is called the tonsils. Since the cerebellum falls, it can block the flow of cerebral spinal fluid and cause problems. However, many folks are A-symptomatic and never even know they have the condition until a MRI for some other reason reveals it.

Gina, I am so sorry to hear about your nephew. I have copied and posted a link here for anyone that either has Chiari, or knows of someone that has Chiari. There are many wonderful supportive and very informed folks here that would love to support you and your sister while you are going through this very stressful time.

http://p198.ezboard.com/basap5881

After getting my diagnosis I spent a lot of time on this board reading every single post on both the ASAP portion, and the Chiari portion. The folks have been very nice and offered valuable information. I even spoke with Sarah in Paradise on the phone personally prior to my first appointment with the neurosurgeon. She was incredibly helpful and having been a nurse very knowledgeable. She has spoken to groups of neurosurgeons regarding Chiari, and is often consulted by other doctors as she has such a broad knowledge base.

I agree with the other posters that are getting frustrated with the constant suggestions of NUCCA/Chiro for every single medical condition, especially one as serious as Arnold Chiari Malformation. It is getting a little old.

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

Hi Gina,

I'll take my lumps when I cross a line, which I did; but now let's be real. Have you ever heard the old Henny Youngman Joke about the guy who goes into the doctor's office . He say's, "Doc, it hurts when I do this." The doctor said, "Well don't do that." Really Gina, if you or anyone else do not want to know what I have to say, "don't do that." Don't read it, dear. I'll tell you right now, I love all of you; but I am not content for people not to know that they can do something non-invasive that has a strong chance to help them. That does not mean that they have to follow the course that has helped me and helped many folks out there who have tried it. That is completely up to them. But right now, there are people who are getting better from having been exposed and taking the initiative regarding what I have posted on this forum. No one, however, is getting better from taking valium. No one is getting better from simply maintaining their misery. Honestly, it does not interest me to read commiserations on this site. I am not here to commiserate. I am here to be positive. I am here to tell folks what very well might work in the majority of MM cases, maybe not yours. But yet I expect that you will never know if it could help you because you have to be the one to spearhead the treatment. From what I have read from your posts, I do not expect that you are presupposed to do that. Furthermore, it may be that any surgery you had in the past might also detract from your prognosis. Perhaps not. I do not know. But the idea that you are somehow going to have the plug pulled on me is, well, maybe its time for an apology on your part. That's a little over the edge itself. Let's just make a deal here. Let's agree to try to help others in our own way. If you do not like my way, just don't left click. And if any of you guys want to private message yourselves about me, hey, that is your business. It does not affect me in the least. I have never voiced this; but I can't help noticing that everyone I know on this site stays anonymous...everyone except me. I can't vouch for the motivations of others; but I do know that I believe in what I say, I back up what I say and I take responsibility for what I say with my own name and contact information. Everyone knows how they could reach me if they desire. I am willing to do anything in my power to help anyone on this site. I have offerred financial assistance to folks. Anyone else out there do that? Not that I have read. So yes, let's cut the feuding. Let's get back to trying to help each other. At this point, I'm sort of glad this happened. It helps to clear the air every once in while to push the envelope with folks. Who knows, I may try it again sometime.

Good health, to you and all,

Hank

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

Hank, I read your post because you titled it "been reading up on this disorder called, Arnold Chiari Syndrome".... and it had to do directly with a family member of mine... WHY WOULDN'T I "LEFT CLICK" (AS YOU PUT IT) when I thought it was going to be a post that might have some good information regarding this horrible syndrome that I could pass along to my family... but instead I find your VERY cruel poking fun at this and then going on and on about this Atlas adjusting again.... and that it might not be Arnold Chiari Syndrome.... when I myself was THERE when the neurologist gave my sister the diagnosis and saw the MRI film in black and white...  THAT is the only reason I got mad.  as far as your other posts regarding NUCCA or Atlas adjustments... yes I have read them and have you ever seen me comment????? NO ... I left it alone cuz I figured it was good information for those that it might pertain to.. I only replied to your ignorant post regarding Arnold Chiari syndrome because it hit a very hard spot with me... forgive me for having a heart but even though you acknowledge what an ass you were for saying it you still continue to press the issue. I was merely just trying to point out that what you had to say was rude and offensive and that others agreed. I, like yourself, have not remained annoymous because I am not afraid to tell you how I feel... others don't like the conflict and neither do I but someone had to say something so you would stop posting on most threads regarding this.  What I am trying to say Hank is that almost every time someone comes on here and posts a thread regarding MM you are pushing this Atlas, Nucca, Chiropractic, etc... and it's getting old. If you start a thread that specifically says "ATLAS, or adjustments, etc I don't read them anymore because it doesn't pertain to me.. I only read the original post because I was quite amazed at the title having the same thing my nephew was just diagnosed with and was hoping to find some good information.. that's all... enough already??  please.

Gina 

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

I came back to this thread and saw that it was going south. I see sorrys have been said and that is a good thing. Perhaps maybe this thread can end on the note that we will not all agree with what has been said, but that we are valued here for our own stories and thoughts on our illness.

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

Hank -

Please be careful when you say things like this. Not everyone is anonymous. Many of us use our real names. We don't use our last names for security reasons. I used my full name originally, and most everyone here knows who I am.

Many of us help others financially and in other ways. We just don't feel the need to broadcast it.

Many of us have been helped in different ways, and we share that info on this site. Nobody is all right, and nobody is all wrong.

We appreciate that you are positive and are trying to help, but please don't state that others on this site aren't.

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Version

I agree 100% with you Gina. And this is coming from someone who personally saw a close co-worker suffer for years with what eventually was diagnosed as Chiari Malformation. He, too, had chiropractors diminish his condition and claim that thier "work" could fix his problem. Well, guess what? they didn't. This man had to see countless neurologists until one trained eye saw his MRI and was able to determine his Chiari diagnosis.

ENOUGH IS ENOUGH.

 

Re: Been reading up on this disorder called, "Arnold Chiari Syndrome" Edited Ver

You know what this board would benefit from?

An "ignore user" button.

Such a button would allow us to effectively 'block' those members whose messages we don't want to read while still reading those from members we do want to read. I know there is one for PMs but what I mean is one for the boards themselves, for the threads.

This board isn't moderated either, is it? Please forgive me if I've overlooked any 'moderator' monikers.