Spastic Paraparesis

LC in UK · #1 (**permalink**) 10-20-2007, 04:03 PM

Hi Mark and Fireyangel
Still a bit shellshocked despite all the research I did up front.
It's cord compression and he mentioned myelopathy. I asked about ADR and he said it's too far gone for that. He said he's writing to my GP.
Apparently the money doesn't follow the patient in the NHS like it's supposed to he said - hence the wait but I will see what my GP has to say about it all.
At least there was no umming and ahhing from this guy like the neurologist, he straightaway said my symptoms were caused by the cord compression and said my reflexes were "jumping" in my arms and legs.
He also said they would do the pudendal nerve tests.
Will be in touch again when I know more.
Thankyou for your support and yes I will look forward to being able to walk round the shops afterwards Betsy!!
Regards
Lynette

mmglobal · #2 (**permalink**) 10-22-2007, 07:09 PM

Too far gone for him? Too far gone at his experience level? Ask him to explain what is too far gone and what the risks / problems are.

fuzzy · #3 (**permalink**) 10-22-2007, 10:26 PM

Second opinion on the ADR question is worth it before you concider a fusion surgery. Don't rush. Be careful with your neck and you will be ok until you can make an educated decision.

LC in UK · #4 (**permalink**) 10-23-2007, 08:25 AM

Thankyou Mark and fuzzy.
Not getting a good service all round here with neurology whether private or NHS it seems.
Saw my GP yesterday and he didn't seem very proactive on the waiting times or on seeing another neurosurgeon.
Said he will write when letter from neurosurgeon arrives and get "creative with the symptoms". Think myelopathy speaks for itself.
I asked for physio to help get fit for surgery and was told physio's wouldn't take the risk with me because my condition is too precarious.!!!!
Definitely have to do a lot of groundwork here and will try for other opinions .
Be in touch
Lynette

LC in UK · #5 (**permalink**) 11-17-2007, 05:10 PM

Sent a letter today to the chief executive of the hospital asking him to explain why I have to wait 4-6 months for surgery to free the spinal cord.
Told him my legs are getting weaker, they nearly gave out yesterday and that my GP and ortho consultant have written stressing the urgency.
These letters obviously haven't seen the light of day.
I came home this evening to a letter from the neuro clinic changing my first clinic appointment from January 7th 2008 to ................................
March 3rd.............They cannot be serious??
Gloves are off now and I have a lot of fighting to do. How depressing.

fireyangel76 · #6 (**permalink**) 11-18-2007, 06:57 AM

Lynette,
I can't believe you have to wait so long! So sorry you still have those wobbly legs! I'd say to keep bothering them and complaining and maybe you'll have some luck that way. There just has to some way to move that up! I just don't understand the NHS and the fact that private pay go first and see the same Doctors! Just seems like a huge conflict of interest!
Don't get depressed....just keep the pressure on them!
Good luck and I'll be pulling for you!

LC in UK · #7 (**permalink**) 11-18-2007, 07:46 PM

Thanks a lot Betsy, someone needs to get a handle on this and quick because it's official complaints and MP next.
This is becoming neglect pure and simple. Difficult not to feel down but the more proactive I can be the more chance I'll have of staying sane!!
Hope things are good with you?
Best wishes
Lynette