10 weeks post second op and hurting

[Guest guest]

Hello again everyone it's me Cez from the UK and I hope some of you

remember me???

Sorry it's been a while but I've found myself in hibernation since

surgery and life has not been very pleasant.

So let me offload and ask questions because I would like some

reassurance and to know I'm not going crazy.

First lets go over the past history.

I'm 36, born with SBO and split cord malformation which was 'fixed'

in November 2004. For my Neurosurgeon's reasons (He felt the rest of

the surgery wasn't needed), he only chose to do the 4 hour op to

release my cord at L3 and remove the bony spicule which dissected my

cord.

I spent 9 days in hospital and did NOT recover well. I don't know

what I did but something happened at 4 weeks? I think something

went 'TWANG' but it was at that point that all went wrong and after

that point my recovery started to slow to the point of nothing. In

fact I started to deteriorate again and my bladder which was going

downhill pre op was now as defunct as a grocery bag.

In August 2005, my surgeon decided for the very first time that I

was going to be his first TCS patient that he would operate on

within a year......Actually because of circumstances beyond his

control it ended up being over a year but what the heck.

In October 2005, I found out that there was a strong chance that my

trusted NS would not be available to do the surgery but I knew I was

deteriorating. I talked to his secretary and because of British

rules I had to have my surgery by a certain date and so she slotted

me in and hoped that my surgeon would be back at work by then.

Unfortunately he was still on sabbatical and so I had the scary

thought of having a surgeon I neither knew nor trusted do my surgery.

My operation took place in March. I had 2 filums which according to

this new chappie both needed detethering. My trusted chap was only

going to detether one because he felt that he didn't want to mess

about with nerves which had been left dormant for 36 years.

My operation should have taken 2-2 1/2 hours and instead took 5

hours. I should have stayed in hospital 7-9 days after lying flat

for 5 days and being on a morphine pump for 3 days. I was on that

morphine IV for 9 days and I stayed in hospital for 30 days. OK, the

last 2 days were because my husband came down with a tummy bug and

couldn't look after me so I should have only been in for 28 days!!

The problems I have had have always been pain and although I have

some more mobility in some respects, this extra mobility causes me

horrific pain and I'm not underplaying it when I say horrific.

I'm spending so much time in bed and for instance the other day my

daughter played in a concert and I knew that sitting for 3 hours was

going to crucify me. I spent Thursday and Friday crying my eyes out

in pain and I can not continue like this.

I am so frightened.

My bladder is much the same as it was which I am pleased about but

my bowels are horrible. They are either constipated or I'm having

accidents and you can imagine how embarrassing that might be. I'm

not going to say what I had to do the other day to avoid a situation

and I was at home and not even away.

I know this could be nerve irritation and I'm perfectly rational

about all of this but it's the pain I can not cope with. I'm

struggling and I don't know what to do? I've had my medications

upped while in hospital and my next PM appointment is in 4 weeks

time although I am on the cancellation list and hope to see my doc

sooner. I'm taking a lot of meds already so there isn't much else I

can take so I'm here to ask those here have been through all of this

for some reassurance because I'm scared.

I can't see any hope but if I didn't go for the surgery then I would

have continued to deteriorate so I had no choice. My daughter said

to me on Friday (She's nearly 13 and hormonal) " Why did you have the

operation, you're no better and it's made you worse " . I've got to

reassure her when I'm still trying to reassure myself.

I can't even walk properly and the physio says I'm a long way off

this and she's told me it's a long road but I keep thinking about

the last surgery and that one didn't work and this time it's so much

worse and it's easy to compare and when you do that you can see just

how bad it is so I've stopped comparing as it's depressing me! (lol)

HELP!

Cez

Not so sunny Hove UK