Re: some additional questions for you

May 17, 2012

I seem to recall your other post said you were going to TCI on the 21st. Put

this on your list of questions for them.

I sounds like you already know a few things that cause trouble like bending over

to pick something up. Until you talk to TCI, I would include no bouncing

(trampoline or horse) or exertion like running. You can still have fun with

your son and stay comfortable, with some adjustments.

Pre-decompression I used to get sick if I exercised. No one believed me and told

me to push through, exercise harder. But, after a run or workout, I would be

sick, with nauseau and headache. Dizzy which would leave me disoriented, like

having to touch a wall to walk without stumbling.

Once I talked to a Chiari specialist and got a well analyzed diagnosis, I found

out why exercise bothered me. The neurosurgeon did not miss a beat when I asked

about it. He said that my CSF flow was blocked and any exertion that increased

my blood flow, also increased CSF flow. The example he told me was like a

clogged sink that very, very, very slowly drains, one drop at a time. My CSF

was the same way. With exertion, my CSF would back up, then it would take days

and days to normalize, like one drop at a time.

I did not know this until I got a well analyzed diagnosis from a Chiari

specialist, from TCI in NY. I had been to Hopkins and to NIH. I almost

qualified for the surgery at NIH but they required also having a syrinx, which I

did not have. My extra damage was caused by repeated bouncing of my head. I had

erroneously been going to chiropractors since I was a child. I even remember

the first chiropractor telling my mother my head was jammed down onto the neck,

or something like that. He never should have adjusted me, but he did, over and

over and over. (But that is a whole 'nother story.)

I used to dance a lot. But I was always sick for 2 or 3 days after. Same thing.

CSF backed up then took days to normalize.

I am 10 years post-decompression. They were not able to fix everything

(between chiropractic and being miss-diagnosed over 30 years, there was damage)

but the neurosurgeons fixed enough that my life is more than 80% improved.

I don't miss the dancing because I really love having day after day that is pain

free, clear headed and active. I am walking, talking and working. I take care

of my Chiari leftovers as well as other body/aging stuff. I know my limits and

I know my strengths. I can exercise now but I have to pay attention. If I see

signs that that I might be doing too much, I back off before it causes trouble.

My friends and family know my limits and my strengths, and we all adjusted.

You will get there too.

Hanna

To:

From: ballanml008@...

Date: Thu, 17 May 2012 10:50:03 +0000

Subject: some additional questions for you

I was wondering if any of you had any advice on which types of activities

to avoid. I said earlier I have a 4 year old that is EXTREMELY active, and it

stinks that I can't do (or i should say when I do certain things with him) I

feel worse and it's worse for days after I run with him, lighly bounce on the

trampoline with him, do anything that requires me to bend over. I hate that I

don't have the energy or the tolerance for the pain to do these things with him.

Can you guys give me advice on what I should or shouldn't do that you have

experienced in your journey with Chiari? How about horseback riding? I love

riding but Im scared of the consequences. Any advice would be helpful. Thanks

again,

May 17, 2012

Yikes, when I sent the previous email, all my formatting and paragraph returns

went away. I know long blocks of text are hard to read. Here is it again,

hopefully the pargraph returns will hold.

I seem to recall your other post said you were going to TCI on the 21st. Put

this on your list of questions for them.

I sounds like you already know a few things that cause trouble like bending over

to pick something up. Until you talk to TCI, I would include no bouncing

(trampoline or horse) or exertion like running. You can still have fun with your

son and stay comfortable, with some adjustments.

Pre-decompression I used to get sick if I exercised. No one believed me and told

me to push through, exercise harder. But, after a run or workout, I would be

sick, with nauseau and headache. Dizzy which would leave me disoriented, like

having to touch a wall to walk without stumbling.

Once I talked to a Chiari specialist and got a well analyzed diagnosis, I found

out why exercise bothered me. The neurosurgeon did not miss a beat when I asked

about it. He said that my CSF flow was blocked and any exertion that increased

my blood flow, also increased CSF flow. The example he told me was like a

clogged sink that very, very, very slowly drains, one drop at a time. My CSF was

the same way. With exertion, my CSF would back up, then it would take days and

days to normalize, like one drop at a time.

I did not know this until I got a well analyzed diagnosis from a Chiari

specialist, from TCI in NY. I had been to Hopkins and to NIH. I almost qualified

for the surgery at NIH but they required also having a syrinx, which I did not

have. My extra damage was caused by repeated bouncing of my head. I had

erroneously been going to chiropractors since I was a child. I even remember the

first chiropractor telling my mother my head was jammed down onto the neck, or

something like that. He never should have adjusted me, but he did, over and over

and over. (But that is a whole 'nother story.)

I used to dance a lot. But I was always sick for 2 or 3 days after. Same thing.

CSF backed up then took days to normalize.

I am 10 years post-decompression. They were not able to fix everything (between

chiropractic and being miss-diagnosed over 30 years, there was damage) but the

neurosurgeons fixed enough that my life is more than 80% improved.

I don't miss the dancing because I really love having day after day that is pain

free, clear headed and active. I am walking, talking and working. I take care of

my Chiari leftovers as well as other body/aging stuff. I know my limits and I

know my strengths. I can exercise now but I have to pay attention. If I see

signs that that I might be doing too much, I back off before it causes trouble.

My friends and family know my limits and my strengths, and we all adjusted.

You will get there too.

Hanna

To: chiariconnectioninternational

From: hannatet@...

Date: Thu, 17 May 2012 09:35:20 -0400

Subject: RE: some additional questions for you