6 month post-op PFD

[Guest guest]

Hello group,

Hope all had a wonderful Christmas and/or holiday.

 

It has been a while since I posted to the group, but I have been lurking in the

shadows reading and replying to postings. 

 

I would like to quickly vent my frustration on my recent decompression surgery. 

I am 6 months post- op.  I received very little relief from my 24/7 vertigo and

dizziness. I am about 30 percent better on a good day.  My tinnitus is as bad or

worst (hard to tell).  My POT's is a bit worse because my blood pressure is

dropping lower when standing still for to long.  My heavy heart beat is still

there and worsens if I do any thing a little strenuous, such as, walk up a

flight of stairs or help take in the groceries, etc.  If fact, my heart is know

skipping beats more than a few times a day.  Still have massive floaters in

eyes. Weather pressure changes still make me dizzier and an affect my balance

tremendously. I am very frustrated!

 

What has improved?  Like I mentioned I am about 30% less dizzy on good day.  I

have had only 3 minor headaches (no migraines!!!!).  cent lighting can now

be " tolerated. "   I can sit at the computer longer than 10 minutes without

getting dizzier.  I am grateful that Dr. M and Dr. B restored my CSF flow and

possibly stopped or slowed the progression of Chiari.  Dr. M told my wife and I

if I waited another year I would have most likely died.  So now I can only pray

that in the next 6 months I see additional relief, but like many of us the

Chiari demon has beaten me to the ground, so I am pretty much giving up and

trying to except this will be my life.

 

Wishing all a happy new year!   

Guy

Chicago

Cervical C3-C6 07/2007

TCS Surg 10/2007 TCI

PFD Surg 06/2008 TCI

[Guest guest]

Guy,

I don't usually post either but always read the posts.

I have been dealing with a

known Arnold-Chiari since 1990.

I have had two decompressions since 1991. I am worse

off now than I was after my first decompression due to

complications from my second decompression. (Double

vision, balance problems, head and neck pain,

swallowing issues)

My neurosurgeon in RI in 1990 told me that the

decompression can only hope to stop the progression of

the Chiari and that there is no cure. He said that I

would probably stay with the headaches all my life.

He did the first decompression because I was losing my

vision and he was unsure if I would regain some of my

sight back at that time.

If you are 30 percent better on a good day then you

are a lucky man. You have probably stopped the

progression.

Just know that you are not alone and there are alot of

us that have been beaten down by the Chiari monster.

I hope that the New Year gets better for you than this

year has been. Don't let the Chiari Monster beat you

down and give up. There is always hope. I have seen

huge improvements in the information on Chiari and

research since I first found out that I had

Arnold-Chiari back in 1990. There are better days

ahead.......we just have to believe and not give up

and let Chiari win.

I pray that everyone here has a much better year than

2008 has been.

Take care,

Debi

VP shunt Dec 1991

PFD June 1992

PFD Revision March 2000

Posted by: " Guy Monteleone " nb8702@...

nb8702guy

Tue Dec 30, 2008 10:45 am (PST)

Hello group,

Hope all had a wonderful Christmas and/or holiday.

It has been a while since I posted to the group, but I

have been lurking in the shadows reading and replying

to postings.

I would like to quickly vent my frustration on my

recent decompression surgery. I am 6 months post- op.

I received very little relief from my 24/7 vertigo

and dizziness. I am about 30 percent better on a good

day. My tinnitus is as bad or worst (hard to tell).

My POT's is a bit worse because my blood pressure is

dropping lower when standing still for to long. My

heavy heart beat is still there and worsens if I do

any thing a little strenuous, such as, walk up a

flight of stairs or help take in the groceries, etc.

If fact, my heart is know skipping beats more than a

few times a day. Still have massive floaters in eyes.

Weather pressure changes still make me dizzier and an

affect my balance tremendously. I am very frustrated!

What has improved? Like I mentioned I am about 30%

less dizzy on good day. I have had only 3 minor

headaches (no migraines!!! !). cent lighting

can now be " tolerated. " I can sit at the computer

longer than 10 minutes without getting dizzier. I am

grateful that Dr. M and Dr. B restored my CSF flow and

possibly stopped or slowed the progression of Chiari.

Dr. M told my wife and I if I waited another year I

would have most likely died. So now I can only pray

that in the next 6 months I see additional relief, but

like many of us the Chiari demon has beaten me to the

ground, so I am pretty much giving up and trying to

except this will be my life.

Wishing all a happy new year!

Guy

Chicago

Cervical C3-C6 07/2007

TCS Surg 10/2007 TCI

PFD Surg 06/2008 TCI