I'm BAAACK!!

[Guest guest]

Hi all,

Those of you who remember my last two times on the list may know me better

as gregh with the address chows@... before.

I hope not to annoy you for too long but just thought you might be

interested in the tale of me to date:

1993 - I suspected a heart attack, had it checked and found it wasnt and

later in the year finally had to quit work as I could barely walk up a small

incline on my better days and on my not so good ones had to ring my wife to

come rescue me from work as I couldnt walk uphill to get to the station a

quarter of a mile away. Jan 1994 after consultation with a sleep disorders

specialist, it was confirmed that I had sleep apnea. So far, that is not

responding to any treatment whatsoever and looks highly unlikely to do so in

the future. Even the standard tracheostomy wont work with me due to trauma

to my jaw causing arthritis so bad that the muscles of the neck actually

contract and block off the windpipe when asleep so it will naturally close

over then inserted end of the pipe as well. Yes, this had all been looked

into by the sleep disorders specialist and a maxillo specialist.

Last year, a friend of mine in USA who I met via our common love of the

breed of dog called " Chow Chow " sent me a really hilarious email, so I

thought. I knew she was sick and asked her about her health now and then to

see how she was doing and she asked after mine, knowing I had sleep apnea. I

forget what I told her but she replied with, in part " Stick your finger down

your throat and tell me what happens " or words close to that. I am one of

those types who loves a good joke and was in the mood to have one played on

me so did so. I stuck my hand in as far as I could get and could feel the

dangly bits at the back of my throat but otherwise nothing happened. I let

her know nothing happened and she replied that I should have gagged and

start looking up Chiari. I thought about it and decided that yes, I should

have gagged so looked into Chiari. Well, I have Aunts and an Uncle who were

more likely to put on a dying duck act than not so when I read about Chiari,

I immediately denied it was part of what my problem was, wouldnt countenance

it and said, politely, " thanks but it isnt me. No way " . She told me " OK dont

believe it is you. Just try to prove it isnt you " and of course, liking a

challenge, I thought I would prove that very thing to her in my own smug

secret way. The upshot, as you can guess by me being here, was that I proved

the likelihood was greater than 75%, in my mind, that I actually *DID* have

it. Well, as you probably all did, I scratched my head, got a little

depressed about it but decided that hey, the sleep apnea may only be a

symptom OF the real problem so I may be able to get rid of the two things

ultimately and away I went on a hunt.

Since I started that hunt, I have been to 2 Australian Neurologists, 1 of

whom is recommended on the WACMA list I must say but really shouldnt be (no

offence meant but read on as to what happened to me). I saw the first

neurologist (the list recommended one) and what he wanted to do to ascertain

the presence, or lack, of Chiari was send me for a simple x-ray. I had a

veritable SHEATH of printed data thanks to WACMA ;-} and pointed out to him

various things about Chiari symptoms that I had (in fact, almost all) and I

also pointed out that current " cutting edge " American neurology thought was

that an x-ray isnt really that accurate and that an MRI is the best and

requested that I be allowed that. He stopped, snorted like a bull about to

charge then let out a sigh like an old steam train letting out too much

pressure buildup. Then, he said to me " 20 years ago, I would have demanded

your medical qualifications and had a knock down, drag out fight about this

with you but now, you can HAVE your MRI " leaving me flabbergasted. As luck

would have it, I was still laying on his examination bench and he just about

turned and walked out to the other room of his office and left me there.

Naturally, without thinking and wondering what the heck was up his craw, I

got up too quickly, fell over straight away with overwhelming dizziness and

sick feeling, finally got enough ability back and walked out to him where he

had written out the MRI request form, threw it at me and announced he doesnt

think I have Chiari. Well, I went for the MRI and took it back to him and he

proudly announced he was correct. Feeling less than happy that this guy was

interested in my wellbeing more than his own pride, I rang my sleep

disorders specialist and asked him to recommend someone and send me a

referral. He did that.

I went to the second guy with the MRIs from my first and he saw the name of

the first on it and immediately clammed shut. He said that whatever the

first said would be the case though he had a look at the MRIs and decided

that I had no evidence of Chiari. I asked him what was his opinion on what

would be considered Chiari and he said about 5 CENTIMETRES of protrusion!! I

told him that the latest American thought was 2 millimetres or less can

trigger the symptoms and he basically laughed at that and acted as if I was

telling him the tooth fairy was real. That was the end of that.

Time goes by....I dont work because I cant stay awake past about 3PM without

massive strain on my body which requires me to do next to nothing for arond

a week afterwards and in this time, something else is added that I didnt

have before. I start feeling like I am, for want of a better term " phase

shifting " , eg, as if I am moving in and out of reality. Sounds odd doesnt

it? I get dizzy, feel like everything around me is unreal and I am quite

stuffed. It passes after a while and most definitely chocolate helps to

shorten the time it takes to pass so I thought it may be some form of

diabetic problem. Nope, wasnt that. I just decide to file it away with the

rest of the symptoms. The problem with that was that it was more like 2

symptoms in one. There was the dissociation with reality type feeling

brought on by dizziness but within days, when I got used to the feeling

coming on so would sit down to limit the effect, things would start to move.

That is, I would be sitting still and feel JUST like something is moving. I

would feel like the whole chair I was sitting in or the bed I was laying in

had been possessed and was moving of it's own accord. I couldnt feel MYSELF

moving in any way that could cause the moving but still it is there.

There are many reasons I have to find out what to do about this problem but

unfortunately in Australia, we still dont appear to have the right people to

handle the job. Add to that the cost of getting to America then the cost of

the American health system with no insurance to cover it and you can see why

going to USA is out of the question for me. So, I am back to read and learn

from you, maybe add something I know about if that ever turns up but

hopefully wont be here a long time, just for a good time. Every year around

now I catch a cold which I have done already and it doesnt leave me for

longer and longer periods. Last year was middle Dec when I got rid of it

(our Summer) and it really was bad last Nov for me just from a simple cold.

Also, like many of you may do, I feel totally useless. My wife catches a

train 2 hours each way, each day, to work while I dont have a hope in heck

of getting a job or holding it even if I did so I do what I can around the

house for her and even that gets less as time goes by. I *WANT* to do more

for her or even bring in an income to make things better. Hopefully, with

what I read from here, I can find an Australian Neurologist/Neurosurgeon

with sense enough to know that to learn more, they have to look OUTSIDE the

country as much as INSIDE it. Maybe if that isnt possible, I can at least

learn enough from here to make an Aussie Neuro* realise that more has to be

learned and benefit from that.

Sorry if this sounds just like a big whinge but I am, as you can guess,

totally disabled even from just a sleep apnea only perspective but it isnt

recognised as a disability in Australia so I dont get a red cent in Govt

assistance. Added to that, the Fed Govt here has plans to make the disabled

work for a living or at least prove they are really attempting to get a job

and if they cant, lose their entitlements. So, I either get better and work

or sit at home and sponge off my wife. I dont choose to sponge but I didnt

choose to get sick either so I choose to try and educate the Neuro* people

over here so I *CAN* get better and I dont care if that gets me a bad

reputation amongst the Aussie Neuro* community. I need to start learning

more before I can do that, though as every single new thing that comes up as

a recurring symptom on me is already noted as a symptom of Chiari yet

according to the " I know better than you " medicos here, I dont have it.

Imagine me sitting on a hard place with a rock just about to slam into me

from above! ;-}

Hey I have one thing that might help some of you who have trouble going to

sleep - I turn on, on low volume, the CD " Deep Forest " and especially track

5 of it. If you have trouble getting to sleep, this may help.

chows@... Australia

Chow Addiction Society Founder and Lifetime Member #1

Are you OLD when you enjoy a good headbanger song with others over 40?