Update-Blindness ACM Related?

April 18, 2010

Hi To Everyone,

Well other then the post I sent last night I haven't posted much due to many

ER and hospital admissions lately. I've been admitted to the hospital 9 times

and been to the ER 8 times. No brag, just fact.

I've been too sick to spend a lot of time here. I was diagnosed with a PE.

Then I had to have emergency surgery for a large abdominal hematoma. If that's

not enough, now I'm loosing my vision. My peripheral vision is totally gone.

The LORD knows what we can and handle. He never gives us more than we can deal

with.

The rest of my vision is trying to leave. I've had terrible HA's with this

vision loss. I've had 3 LP's. the first one I was told by my home health nurse

was 23. I did get relief after that tap. The next LP a PA did it. I've never

had a tap where they do it an inch above your tail bone in the Sacrum area.

OUCH!! that hurt!! For two days I could barely walk because of the pain.

The last tap was really low too, like right above where my Sacrum begins.

Those two don't count as far as I'm concerned. No one thinks high pressure is my

problem. I can't take Diamox due to a bad reaction. It does get rid of my HA.

Neptazane doesn't help. They put me on a blood pressure med to see if that

helps. I don't " see " a significant improvement at this point. I've only been on

it for a couple of days though.

Last time I went to TCI, Dr. Kula, made it abundantly clear they don't do LPs

and that they don't do shunts. If ICP is my problem, I'd like to know for

sure, I don't want to go blind.

I've gotten so many varying opinions. More Dr.s lean toward it being ICP than

not. Then they start to vacillate.

So anyone want to tell me if you think this is ACM related? If so how? Please

share your experiences.

Hope you all are hanging in there. Keep your chin up.

Take Care,

Regina

ACM1 11mm SM C6-T1

Decompressed 2001

TC Surgery @TCI 2007

PFD Revision/Fusion @ TCI 2007

" ...the joy of the LORD is your strength. " Nehamiah 8:10

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