Dr. Oro's poem "So I Say"

[Shane99]

I've seen on these forums mention of a Dr. Oro's poem about Chiari. I looked it up and read it.

Man, he's right on the nose with it.

Someone may have already linked it, but I didn't see it. If this is a re-post, sorry about that. I would like to have just posted the poem, but I'm not sure about the copyright on something like that, so I figure this is the best way.

Everyone on these boards, wether you have chiari or know someone who does . . .heck, maybe if you don't actually have it, this might even be better for you, to help understand what those of us that have it are going through.

Anyway, here's a link, it's really a great poem:

http://www.chiaritimes.com/ChiariTimes/Blog/Entries/2007/12/22_Imagining_a_patient%E2%80%99s_view.html

[Shane99]

Yeah, I call that my "Frankenstein picture". But once my hair grew back, it can barely be seen.

I've had several rounds of therapies for this. I've had neck muscle therapy, fall prevention therapy, visual therapy, and now I'm doing lower back therapy.

I've heard people say it takes a year or so to get back to "normal" - whatever that means. But mine was caught late and I'm showing signs of permanant damage.

I also have memory and concentration problems. Those are very bothersome, they sometime make me feel like I'm not as smart as I used to be.

[05271959]

Shane99 when i saw your photo i got chills down my spine...i figured it looked like mine but i was not willing to look in the mirror and admit i had some intense surgery.  I was diagnosed with Arnold Chiari Malformation type II and had surgery August 8th of this year.  The journey has been intense and hard but is well worth it.  I no longer have the vertigo, headaches, clumpsiness and all the other things that went along with it.  The neatest thing is the eye sight...it has improved since the surgery and things are so sharp and clear...the partthat i have trouble with is when i go to do things i did in the past and am unable...things as simple as writing my name and doing math problems.  The rehabilitation had taught me to do a lot of these functions actually has taught my brain to recall what i already knew.  But the depression does ome and go everytime i can't...just can't no matter what it is...i cannot always get to a computer and chat and there is no support group or it is difficult to explain what i am feeling to others...i am grateful for this internet support group...hey is their others out there that have been in physical therapy and occupational therapy...i tell you what i have a great group of people that teach me well...i just an't give up...so how long does it really take to get back together?????

[selmaS]

Hi...I have it copied and pasted in my journal......

[christinablue]

omg thanxs for posting this link i have not read this before but it says exactly how i have been feeling and haven't been able to put words together for