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[pinkcloud]

I decided to pop on here to help others understand a few steps to take had they feel stuck. And are not under the care of the spinal injuries unit.. Luckily I am now.

Survival tips
When we go home, lock the door we can feel safe..when we are in bodies that feel wrong...nowhere can feel safe..where ever we are....

Its hard to prove to your family doctor that the surgeons letter is wrong..especially a brain surgeons letter.....

Its not how long surgeons have been in the job, whats important is how many cases like yours they have successfully operated on. You have a right to ask.
Remmber that lthough they may be able to stop further injury happening, its not always possible to repair any damage thats already been done.
Its how the nerves/muscles repair themself..rememer when we are spinal cord injured..its as if battrey acid has been poured over the nerves inolved..not everybodys nerves are going to grow back in the way that they did do before.
Doctors can only help the body to heal itsemself
S surgeons work can be 100 per cent..if bad aftercare by others is done..all their hard work is undone.

Do remmber at our most drastic time..us and our loved ones may be told the news and we say 'we would survive this at any price', well sci is 'our price we pay'.
We are just fortunate say..compared to babies whom hurt as soon as they breathe their first air.

Consultants do have to discharge at sometime, they have so many new patients to see..even in the private sector your not under their care 'just in case' Heres an explanation of job roles..in basic form..

Neurosurgeons
These specialize on taking pressure off the brain and spinal cord, thats their job.
There are many who specialize in either lumbar, thoracic or cervical parts of the spine. Some specialize in all areas.
There are som who are interested in pain management. of certain conditions.
They may discharge you back to your family doctor saying the operation went great..to them it was if that pressure has gone (be it a tumour, disc etc)
Family doctors are not brain surgeons and dont unerstand much about spinal cord injury, so unless you keep going back to tell them you suffer, they wont know you do.
You may request to be referrred onto:

Neurologist
These look at the nerves and know lots aout nerves.....my be ale to explain more how stuff works and manage the pain better.

Orthopaedic surgeon - spinal as a speciality
these being orthopaedic may also look into other musle/bone troubles that have resulted from sci.
Like neurosurgeons they are not pain management doctors. They can see other trouble spinal injury/neuros cant understand in the body

Pain management
Try to get one that specialises in neurorehabilitation rather than general pain management, because they again, will have seen similar thus understand your condition better

Physiothrapy
If it dosnt work....tell the doctor who referred you it didnt work. If a physiotherapist finds something, not all doctors will listen to their opinions..
although i found they do listen whe the physio says theres nothing wrong.........

chiropractors
These dont have x-ray eyes......be careful who choose

And PALS, they are there for a reason....not happy with your care, let them know. Also you do have the right to ask to see the Consultant himself..rather than a team member...or another Consultant in the hospital..it will mean waiting longer for your appointment yet worth this.

I suffered so much abuse off nhs nurses..I remembered to concentrate on writing to always let the hospital know the nurses who treatd me with great care....the tea ladies and cleaning staff who took time to say hello, help with menus...now these ladies are very overworked and if we dont tell the hospital...no one will know.

i was left to suffer for 2 years before me giant herniated disc was found....had it been found earlier i would have just had nerve/muscle pain by the disc being on the cord a little bit......yet i looked too well, did too much activity, coped on just paracetamol as i hated medication and thought it unneccessary to take it..to be believed.A lot ike you lot..

Remember kylie minogue for example...was found to have cancer..looked well, did amazing physical stuff.....its difficult to tell in some cases when we are ill.

All this information will help to not get bitter....to get.............. even better.

And to think....we are relieved to find out we are not mentally ill - that there is something physically wrong, is a relief at frst. Thats a tragic state of affair to be in i think......

Edited by pinkcloud, 09 August 2011 - 12:34 PM.