Spastic Paraparesis

[LC in UK]

Hi all
Just to say I saw the neurosurgeon this afternoon and he says I need a 3 level fusion from the front, putting spacers in and other things I think , can't quite remember.
Will be done at Kings College Hospital in London but there is a 4 to 6 month wait on the NHS.
Just have to continue taking things easy while I wait but he says if things deteriorate I must let my GP know.
So there we are!!

[fuzzy]

I WISH you could go to Munich get second or third opinion there from neurologist Baumbach and also the ADR surgeons there, Zeegers, bertagnoli etc. ADR sounds so much better to me then a 3 level fusion.

Baumbach found me to have a problem in my neck in addtion to the known problems in my lower spine. This problem seems to be compounding my problems caused by my lower spine.

Neuro says neck surgery, Orthopedic surgeons (2, both in Germany) say fix the "obvious" lumbar (MRI, pain history) problems first. Confusing, to say the least.

Sometimes there is no simple answer. Get second and third opinions.

[fireyangel76]

Hi Lynette,
Good news to hear you are finally getting some long needed diagnosis of your wobbly legs. So sorry to hear about needing the fusions.
I am holding my own with my c6-c7 problems. I have a wonderful physio team. My legs are very stable and I will try very hard not to follow in your footsteps!
Hope your wait for surgery is not too difficult for you. Just think of all the shopping trips with your daughter you'll have when your are steady on your feet.
glad to hear it wasn't the dynesys! Keep me updated on your spirits and all while you await surgery!

[mmglobal]

I'm not sure I understand... do you have actual spinal cord compression causing balance/coordination/strength problems in your legs? Are they talking about myelopathy, myelomalacia or other things that may be related to spinal cord compression? If so, waiting 4-6 months may come with additional risk. Ask him what the risks of waiting are??? If you were his wife, when would your surgery be??? When do myelopathic symptoms rise to the level of being more urgent than "go to the end of the line"?

Mark

[LC in UK]

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]

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]

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.