When to go to Spinal Unit

[Janet]

I'm just catching up on some replies since I was here last and hope you guys are all OK.   
The reason for starting this new topic is to ask what type of Hospital or Hospital Department do you attend and the treatment you get at hospital, those with incomplete SCI in particular. 
I've SCI C4/5 & C5/6, calfbone inserts one huge disc stuck to a nerve; the surgeon who operated 15 yrs ago said there was 1 more level and suggested an 18 month wait and see or wide cervical laminectomy but its never been discussed since. He also told me there had been descent of a pelvic membrane. Survey of the procedure wasnt glowing and some died or were tetraplegic.
In 2005 another Consultant said nerves out of neck to arms need more space but the Hospital had to admit to negligent admin procedure. At an appointment since to see the Consultant only the Registrar came over to see me, going backward & forward to the Consultant; that was when the Registrar told me about permanent damage which I had known all the while. He did suggest facet bone procedure, and I left the Hospital thereafter.   
The overall condition now is C3 to T3; bowel & bladder dysfunction slow motility. If I dont take enough fluid I get cystitis. The sweating in my head can sometimes be all day; its when the bowel is moving and most nights my head is damp, upper body and bed clothes too. Its become something I accept on a daily basis. I darent wax my hair cuz it would wax my face as well! 
I think its time to ask to go to a Spinal Unit but feel a fraud in that outwardly appearance doesnt suggest anything wrong.  Can you guys tell me what sort of patients attend Spinal Hospitals rather than Neurosurgical Units please; would I look out of place being able to walk on my own?   I hope I'm not offending anyone by these questions.

[ghoster]

hi janet, get your self to a spinal unit asap, my consultant always says "if anything changes or doesnt feel right, call us".
what spinal unit you near, i can give you a consultant name to call, or a bowel care nurse.
you wouldnt be out of place as there are approx 20% of new injuries are walkers, you are not a fraud just because you have no outward signs, thats not how it works. please put those feelings to one side and get yourself looked at, something is quite right and the spinal unit is the best place to go, yours is a complicated injury thatr needs to be seen by specialist consultants.
i am not a walker myself but know i lots of them, they are very handy as freinds coz they can reach the stuff on the high shelves!
hope this has helped.

[Janet]

hi janet, get your self to a spinal unit asap, my consultant always says "if anything changes or doesnt feel right, call us".  what spinal unit you near, i can give you a consultant name to call, or a bowel care nurse.
you wouldnt be out of place as there are approx 20% of new injuries are walkers, you are not a fraud just because you have no outward signs, thats not how it works. please put those feelings to one side and get yourself looked at, something is quite right and the spinal unit is the best place to go, yours is a complicated injury thatr needs to be seen by specialist consultants.

Hi Ghoster,  Not sure I'm doing this right so apologies if not. Very grateful to you for your reply.  My problem is where I live; IOW. No Spinal Unit as such other than I guess Stoke Mandeville. Locally I've been shuffled back into Orthopaedics and Pain Clinic here in the Island because we dont have any one with any knowledge of SCI. One GP told me the Pain Clinics in hospitals dont prescribe Class A drugs such as Fentanyl so I'm afraid they might try and wean me off it.  I'm having to pluck up courage to go to my GP who knows nothing about me - havent been to see her since she took over in Feb 2008 -  and I suspect financial issues will arise. 
Your post has given encouragement.  Thanks for your helpful advice.

Janet

[ghoster]

hi janet, salisbury spinal unit is 1 hour 30 mins from you.
ask for wendy slater 01722 429291 or rachall stowell 01722 429130, or mr trumans (consultant).
please call them, better safe than sorry.
ghoster

[ghoster]

janet, ghoster here, print the numbers off and take them to your gp - he can arrange it for you, if he says no then ring them yourself, he can also arrange transport if you need it you just need to ask.
ghoster

[cate]

Hi Janet. hope y ou are getting somew2here. my daughter is c5-6 with BSS plus a knee injury from a previous accident, she was under Stanmore, which is a bit far from you, but they do come from all over the UK, and they do have a good reputation.      She is by the way a walker also, with crutches. sometimes manages with just one if the walk is not to far., They are doing a lot of new building work at  ROH. and it is built on a hill very tricky, infact I think the slope could be used as ski slope,  they pull the beds to and from the op theatre on luggage type trolleys.  Not useful I know,   So do not feel guilty at all. as Ghoster says many spinal injuries               some are walkers.
best of luck