5weeks post op - need feedback

October 31, 2001

Hi Everyone,

It's been a while since I posted but I really need to ask everyone for some

feedback who has had the decompression surgery.

First of all thank you to everyone for all there support a few weeks ago, it

really meant a lot.

Here it goes. My surgery was Sept. 24, I was 5 weeks post op on this past

Monday. I'm still having a lot of pain and stiffness. I'm finding myself

starting to get very frustrated and concerned if this is where I should be?

I am still on pain killers - Oxycocet ( had to switch to them cause nothing else

touched the pain) and the doctor had also put me on a course of dexamethasone

which I will finish tomorrow. With the dexamethasone it was twice a day for the

first week, then last week once a day and this week .5 a day. As I cut down on

them I'm stiffening up more again. It is such a tight feeling and it feels hard

to hold my head up. I am moving my neck and am doing things in moderation but

everytime I do something I seem to overdo it and pay for it with extreme pain

right down to my legs.

How much activity were others able to do at this point. I do realize that

everyone is different. I also recognize that I have had 8 shunt related

surgeries + this decompression since Feb 99 so my body has been through a lot .

(By the way I am going in for another shunt surgery this November)

My headaches are also back a bit this week but it is more of a high pressure

headache. My neuro opth told me I have both diseases Chiari Malformation and

Pseudo Tumour Cerebri, because my vision loss and damage to both eyes is

papallademia and that is not consitent with vision loss in Chiari Patients.

Does anyone know anything about this?

Anyways, any feedback today would be great I am going to meet with my neuro

surgeon tomorrow. They do not have a lot of cases of Chiari here so I really

would like to know what others have been told to expect in terms of recovery.

Thank you

Jenn

Ott, Canada

decompression Oct.24/01

chiari type 1/pst - hern 20cm

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