Balance after AN surgery The Centrifuge !

[Guest guest]

Compared to you canadians and aussies, I feel gyped! i never had all this fun

after my AN surgeries. Dang, they were down right boring! Marcus so you are

saying

they spun you around in a chair, blew air into your brain (70's diagnostic test)

and gave you some cow hormones, or whateverthe cow story was. hehe gee. I think

the most excitement I experienced was getting lime jello instead of orange!

down under FL

[Guest guest]

I wonder if any of you have had this before and after surgery.

Prior to surgery I spent a few days in a centrifuge.( Few hours per day not all

day ) You know those things they spin the Astronaughts in. This was part of a

research program in Sydney in 1987.

I was securely strapped in the chair and the lights were turned off. The chair

was attached to a rotor at the end of a 25 foot arm. I wore a headset, and was

able to converse with the White Coats in the control room.

There was a row of LED lights at eye level mounted in front of my face. I was

able to control the angle of these LED's using controls on the arm of the chair.

The machine rotated at high speed. It was like being in a race car or jet

fighter making a sudden turn. It was quite a strain to hold myself upright.

The idea was that as the speed increased the chair swung out like a sideshow

ride and I had to correct the angle of the LED's to a horizontal position.

This was done along with other balance tests ( swinging in a suspended chair

with my eyes clipped open ! Gross... ) before and two days after surgery. I

developed a fluid leak after the post operative sessions, and spent a week with

a spinal drain to lower the brain fluid so as to give the tissue a chance to

heal. As it turned out it worked and saved me from having a shunt.

There is humour in this story. I was actually well aware that the chair was

structurally unable to swing sideways, and that your brain just tells you what

it thinks is going on. I had memorised the horizontal position of the LED's and

adjusted them accordingly, not what my brains balance was telling me to do. So

they swung me round for hours more I could hear them muttering in the control

room. They couldn't figure out how I was in fact giving them a true horizontal

reading on their computers. They asked me to tell them ( while spinning like a

top ) what made me think that LED's were horizontal. So I gave them a run down

on how their machine was constructed and a short lesson on how the brain works.

Well I'll never forget the laughter that came through the headset.

After that I let my balance take over, and gave them the results they wanted.

Then they let me go back to intensive care for a week flat on my back.

The moral to this story is 'That you have the choice to say NO to tests that are

just related to research ' My surgeon was really cheesed of when he found out

about it. They were expecting my face to make a full recovery. I could have

ended up with a shunt. I could have died from infection due to the spinal drain

( they had to wear space suits to change the damn thing ) I also had the damn

Cow Blood from the Photo Dynamics in me, and couldn't be exposed to any light. I

was wheeled around Sydney like ET under a blanket. Kids were freaking out !!!

I was just not given a chance to recover.

What was the line in the old " Network " film ??

" I'm Mad as hell and not going to take it any longer "

From MAD Marcus

[Guest guest]

Marcus,

You gave an interesting story and I can't share your experience with the

centrifuge, but saying no to research, you're withholding valuable

information. Without research no improved or better treatments for NF2 is

possible. NF2 is rare enough since effects 1:40,000 that all available

research on the disease should be valuable information.

Mark

----Original Message Follows----

The moral to this story is 'That you have the choice to say NO to tests that

are just related to research '

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Hey Marcus,

I had this done in the early 90's. Mine was after surgery and the doctor was

doing research for NASA space program (I had never met him before). It was

just a one time thing for about 30 minutes and actually kinda neat. Mine was

all dark too with a projector swirling little lights while I was spilling in

a chair. They gave me a button to stop everything in case I felt sick but

nothing happened. The lights moved fast and slow and it felt like I was

rotating fast and slow but I think my rotation speed in the chair was constant.

He told me it takes a while for the astronaughts to regain their balance

once they return to earth. I think he was out to prove that you cannot get

dizzy without the vestibular nerves. He was keenly interested in people with

NF2 and both nerves severed. He was a great doctor to talk to and we poured

through the pictures of the NASA astronaughts posing with him in the chair.

>I wonder if any of you have had this before and after surgery.

>Prior to surgery I spent a few days in a centrifuge.( Few hours per day not

all day ) You know those things they spin the Astronaughts in. This was part

of a research program in Sydney in 1987.

>I was securely strapped in the chair and the lights were turned off. The

chair was attached to a rotor at the end of a 25 foot arm. I wore a headset,

and was able to converse with the White Coats in the control room.

>There was a row of LED lights at eye level mounted in front of my face. I

was able to control the angle of these LED's using controls on the arm of

the chair. The machine rotated at high speed. It was like being in a race

car or jet fighter making a sudden turn. It was quite a strain to hold

myself upright.

>The idea was that as the speed increased the chair swung out like a

sideshow ride and I had to correct the angle of the LED's to a horizontal

position.

[Guest guest]

Marcus,

I smell a lawsuit then. Here in the US anyways they MUST ask you to

participate in a research study and TELL you what the consequences are.

Dunno how it's like in Australia, but medical negligence? I smell a lawsuit.

Mark

----Original Message Follows----

They didn't ask my surgeon if it was OK , which

as it turns out it wasn't. He told me to tell the research team 'NO' I don't

want these things carried out on me. By that time I had the leak. I mean no

one wants a shunt for no damn good reason.

I was never given any results of the Photo Dynamic treatment. ]

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

You have a point there Mark !!

However, these tests were to much for a patient that had just had 17 hrs of

surgery and a 7 hr miningeoma removal 3 weeks earlier. They couldn't give a

stuff what happened to me. They didn't ask my surgeon if it was OK , which

as it turns out it wasn't. He told me to tell the research team 'NO' I don't

want these things carried out on me. By that time I had the leak. I mean no

one wants a shunt for no damn good reason.

I was never given any results of the Photo Dynamic treatment. My surgery was

17 hrs because they were carrying out research during the operation,

expermenting with the Photo Dynamic treatment. The surgeon came out of the

theatre at 11:15 pm angry that the ENT team had stuffed around for so long.

I can't imagine it would be good for anyone to have your head open for near

24 hrs.

It is my view that not all doctors have your total well being at heart.

The research Professor was furious with my wife and I, because I wanted to

go home and recover. He wanted the other AN removed a few weeks later. They

simply wanted to complete their research.

At the time I thought I was doing my bit for research, I was quite willing

to be a lab rat, however I have to live with the results for the remainder

of my life. My skin has never been the same since the Photo Dynamics, I have

skin cancers all over it.

You need to be very careful allowing medical staff have a free use of YOUR

body. Did you read Cross' report of medical incompetance, all the

mistakes that leave people lives ruined ?? Its worth the look !!

Research is fine as long as YOU are aware that there may be a risk involved

that may affect the rest of your life. The reults of surgery are bad enough

! All any of us want is quality of life.

Marcus

>

>

>Marcus,

>

>You gave an interesting story and I can't share your experience with the

>centrifuge, but saying no to research, you're withholding valuable

>information. Without research no improved or better treatments for NF2 is

>possible. NF2 is rare enough since effects 1:40,000 that all available

>research on the disease should be valuable information.

>

>Mark

>

>

>----Original Message Follows----

>

>

>The moral to this story is 'That you have the choice to say NO to tests

that

>are just related to research '

>______________________________________________________

>Get Your Private, Free Email at http://www.hotmail.com

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

[Guest guest]

Marcus in Surfers Paradise,

I can not believe what I just read from you to Mark. How could those doctors

treat you so unconcienably? Unreal! I became enraged reading it. Truly, I

don't believe anyone, except maybe someone who knows for sure they are dying,

should allow such a thing. My deepest regrets for all your pain and the

outcome. Didn't you also say that you have 2 boys with NF? You have done

more than your share for them as well by giving of yourself to research. Be

well. Vicki

[Guest guest]

Hey thanks Vicki.

It was a long time ago now. I don't hold a grudge. Just a memory, and a

lesson that I will never forget with my kids.

All the best to you and Ann.

Marcus from Surfers Paradise

>From: vjpcook@...

>

>Marcus in Surfers Paradise,

>I can not believe what I just read from you to Mark. How could those

doctors

>treat you so unconcienably? Unreal! I became enraged reading it. Truly,

I

>don't believe anyone, except maybe someone who knows for sure they are

dying,

>should allow such a thing. My deepest regrets for all your pain and the

>outcome. Didn't you also say that you have 2 boys with NF? You have done

>more than your share for them as well by giving of yourself to research.

Be well. Vicki

[Guest guest]

Hi ,

I can't completely remember what the reason was for my Centrifuge

experience. But they sure put me through the full wash cycle.

They were really excited about having an NF patient .

Not excited enough to offer a little cash incentive though.

It seems my whole life was going round in circles back then ( he he )

From the Revolutionary Man Marcus

>Hey Marcus,

>

>I had this done in the early 90's. Mine was after surgery and the doctor

was

>doing research for NASA space program (I had never met him before). It was

>just a one time thing for about 30 minutes and actually kinda neat. Mine

was

>all dark too with a projector swirling little lights while I was spilling

in

>a chair. They gave me a button to stop everything in case I felt sick but

>nothing happened. The lights moved fast and slow and it felt like I was

>rotating fast and slow but I think my rotation speed in the chair was

constant.

>

>He told me it takes a while for the astronaughts to regain their balance

>once they return to earth. I think he was out to prove that you cannot get

>dizzy without the vestibular nerves. He was keenly interested in people

with

>NF2 and both nerves severed. He was a great doctor to talk to and we poured

>through the pictures of the NASA astronaughts posing with him in the chair.

>

>

>

>>I wonder if any of you have had this before and after surgery.

>>Prior to surgery I spent a few days in a centrifuge.( Few hours per day

not

>all day ) You know those things they spin the Astronaughts in. This was

part

>of a research program in Sydney in 1987.

>>I was securely strapped in the chair and the lights were turned off. The

>chair was attached to a rotor at the end of a 25 foot arm. I wore a

headset,

>and was able to converse with the White Coats in the control room.

>>There was a row of LED lights at eye level mounted in front of my face. I

>was able to control the angle of these LED's using controls on the arm of

>the chair. The machine rotated at high speed. It was like being in a race

>car or jet fighter making a sudden turn. It was quite a strain to hold

>myself upright.

>>The idea was that as the speed increased the chair swung out like a

>sideshow ride and I had to correct the angle of the LED's to a horizontal

>position.

>

>

>See what's happening for NF2Con 2000!

>http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

>

>

[Guest guest]

Hi Marcus,

Oddly, the doctor that did my 'spin' gave me $10 for my time. It was a joy just

to talk to him. I used a cane all the time when I met him but he had me walk

around and said I did not need it. Now I only use it in the winter when we have

snow. I told him I wanted to donate the $10 back to his research project.

However, he insisted I take it.

Hi ,

I can't completely remember what the reason was for my Centrifuge

experience. But they sure put me through the full wash cycle.

They were really excited about having an NF patient .

Not excited enough to offer a little cash incentive though.

It seems my whole life was going round in circles back then ( he he )

From the Revolutionary Man Marcus

[This message contained attachments]

[Guest guest]

I feel gyped too . I have never been to ride the fuge or any other cool

experiments. American medicine is just too tame.

Jeff

Re: Balance after AN surgery The Centrifuge !

Compared to you canadians and aussies, I feel gyped! i never had all this

fun

after my AN surgeries. Dang, they were down right boring! Marcus so you are

saying

they spun you around in a chair, blew air into your brain (70's diagnostic

test)

and gave you some cow hormones, or whateverthe cow story was. hehe gee. I

think

the most excitement I experienced was getting lime jello instead of orange!

down under FL

See what's happening for NF2Con 2000!

http://msnhomepages.talkcity.com/DeckDr/earld/nf2convegas2000.html

[Guest guest]

Ah ! its simple !

You need to sign up for the full Disney package when your admitted to

hospital ! I took an option on the fully integrated COW package, and got the

'Centrifuge' on Fly Buys..

Marcus

>

>

>Compared to you canadians and aussies, I feel gyped! i never had all this

fun

>after my AN surgeries. Dang, they were down right boring! Marcus so you are

saying

>they spun you around in a chair, blew air into your brain (70's diagnostic

test)

>and gave you some cow hormones, or whateverthe cow story was. hehe gee. I

think

>the most excitement I experienced was getting lime jello instead of orange!

>

> down under FL