New and looking for your experience

[Guest guest]

I'm the mother of a severely disabled young woman. My daughter can't post for

herself, in fact she can't read, write or even speak. She is severely retarded

and autistic. So anything I know about what she is experiencing can only come

from my observations.

In 2002 my daughter had spinal fusion and rods put in her back to help correct

scoliosis. Within just a few weeks it was discovered that she had pulled out

one of the screws at the base of her rods so she went back in for surgery to

repair this just about a month later. The solution was to extend the level of

the rod lower. So the rods go from her neck to just above her pelvis.

She recently has been having problems that we are certain are related to her

back. Her symptoms are the same as someone who has sciatica. It affects her

right side. When she is having a bad episode she bends over very far forward

(she already walks bent over but it is far worse when she is having an episode),

cries when she sits and only seems to be semi-comfortable by sitting on one hip,

sitting on the toilet is very, very painful, she rubs her right leg, limps when

she tries to walk and does not seem able to extend her right leg. Sometimes,

even when she is having a good day she will use a piece of furniture to support

herself and stand in place while lifting her right leg up in the air.

The doctors say she has flat-back syndrome. They also have told us that her rod

is broken and that she has pulled two screws loose at the base of her spine

again.

When she is going through a bad episode Ibuprofen does help.

All this started rather suddenly (as far as my observations - although she may

have lived with a lower level of pain for some time and just never complained).

When it first became awful was mid-August this year and lasted a couple of

weeks. Then she had a couple of good weeks before the symptoms returned. She

has since had a total of 4 bad episodes with a week or two of seeming normal

in-between. This in the span of just over 2 months.

I've talked to one doctor and asked him if he thought that one of her loose

screws could be moving and occasionally hit on a nerve, causing her this issue.

He said it's possible but not likely. That what is more likely is that the

vertebrae below the rod is deteriorating. He didn't say that he saw this in

X-ray, only that this is the more likely scenario. I question this because he

seemed to be basing his answer on statistics, not any real evidence.

I suppose I am hoping that removing he offending hardware could be the answer

but this doctor seemed to think the only answer was a do a revision by taking

the rod even further down and attaching everything to her pelvis. He also said

this was risky and she could lose her ability to walk altogether. For this

reason he seemed to think the best thing to do is to wait until she is so bad

off that she was at risk for not walking if she *didn't* have the surgery.

I'm terrified of this. I can't bear the thought of my daughter possibly losing

her mobility all together. It's really all she has. Her independence to go

where she wants to go is really her greatest asset when you understand how few

abilities she has and how independent her nature. I hate to imagine her life if

this surgery doesn't fix things or makes things even worse.

I'm planning on seeking out another opinion but since my daughter can't speak up

and tell us what is going on with her I am unsure as to how to advocate for her.

I'm hoping by listening to all of you I can gain some insight so that I can make

the best informed decision for my daughter.

Just a bit more information. My daughter is currently 25 years old but she is

very, very tiny. She is about 4'2 " tall and weighs about 65 pounds. She's

about the same size as a 8-10 year old. She also has a CP-like condition and we

were told she would never walk. But I wasn't having that, I knew my daughter

and although she was late to walk I was able to teach her. She even goes up and

down the stairs on her own. She's a very determined young lady.

Thanks in advance for your input. I would love to hear from anyone who thinks

they might be able to give me some insight.