The end is near

Finally after 5 months in hospital I might just be going home.

Obviously I am disappointed that the doctors have never been able to figure out the cause of my paralysis, but I was told from day one that the inflammation in my spinal cord was so pronounced that any damage would be permanent.

But aside from the medical angle, it will be great to be out of a hospital environment and into the real world.

Jay and I now have a one bedroom flat with an adapted bathroom. It is really tiny but the good thing is that the kitchen has been lowered so I can do the cooking and there is a decent ramp leading up to the front door. The flipside is that it is filthy, has no flooring and the kitchen has nothing in it so there is a load of work to be done before we can move in. Jay's folks have volunteered to help us get set up and hopefully can take some of the pressure off Jay as she is working up until xmas.

My wheelchair is in the process of being delivered and my GP is writing up my prescriptions for the 15 odd drugs I take daily and for all of my catheters and that kind of stuff. It is going to cost a fortune but I have already started harassing the people here to get me a prescription exemption.

The only real problem I have at the moment (ha ha - apart from being paralysed) is that I suffer from really bad spasms and in the mornings I simply cannot move and have to be strectched into shape before I can get up. Hopefully an increase in drugs will make my legs get 'floppy' and mean that I can get in and out of bed and the car without fighting my spasms so much.

So hopefully we will be in situ at our new spot before xmas and I will have to get used to being in a wheelchair in the real world. London is pretty crap to wheel around in as the pavements are all at an angle and only the Jubilee line is wheelchair accesible so I need to get a vehicle organised pretty quickly. The chair my local wheelchair service is giving me is basic and pretty heavy so I need to but my own chair pretty soon. Would you believe a basic lightweight chair costs £2500? You can buy a decent car for that price.

But it is all looking pretty good to be fair and I can't wait to get out of hospital and away from some of the moaning patients I share a bay with. There is nothing as galling as hearing a fellow 'inmate' complaining all day about how hard the physios are pushing him when he can walk, albeit with a slight limp when some of us will can't even use our stomachs to sit up straight.

I volunteered to give him a head injury to even things up and he has started to keep quiet recently.

My mate Stuart, who cannot use his arms and legs and is on a ventilator for life as a result of a rugby injury, hit the nail on the head when he said that is always the people with the comparitively more minor injuries and disabilities who complain the most.

So whilst my stay at Stanmore has been beneficial and the staff have been excellent my fellow patients have begun to piss me off big time, which is a sign that I have been here for too long.

I will let you all know what is happening when I leave.

Thanks for all of the messages and support as usual.

Bruce

Nobody knows

Sorry for the silence for the last three or four weeks but the old ways of the NHS are hard to figure out sometimes.

I was told sometime in October that I would be going to the National Hospital for Neurology and Neurosurgery in Central London for investigations 'in a couple of days'. That weekend myself and Jay were going to spend the weekend at the Graham Hill unit, which is a purpose built flat for wheelchair users. We were the both excited as it would be the first time we could spent time together in 110 days.

You know what happens next.

I was told I had 1 hour to pack and was transferred to the other hospital on a Thursday and over the next 4 days had one blood test and met with my consultant once, so there was hardly a rush to get me there.

I was also told the only reason I was there was for a 'couple of tests'. 3 and a half weeks later I returned to Stanmore.

The doctors at the hospital itself were extemely switched on. My consultant Dr. Manji was excellent and referred me to several specialists in various areas.

Obviously the first issue was the ascertain the growth of the lesion and when the operation was to take place. I went for a PET scan which is the latest, greatest scanning method and involves radioactive isotopes being injected into the body to highlight areas of inflammation. It showed that I have inflammation of the spinal cord, which we all knew months ago. Bit of a waste of a £1000 scan but at least there is no inflammation of the brain.

So the registrar, consultant and the surgeon, Mr. Casey http://www.uclh.nhs.uk/GPs+healthcare+professionals/Consultants/Mr+Adrian+Casey.htmall met and decided that surgery is not the answer.

They said that there was no clear evidence that the lesion had grown to such an extent that surgery was necessary and unavoidable and that I should be scanned in a few months to see what has happened in terms of growth. The surgeon said the risks of further spinal surgery were so great that surgery should be a last resort.

So as it stands they are not convinced the lesion has grown and don't want to operate. I will have an MRI in a few months to see if there has been any change.

The other issue was whether the inflammation was caused by an infection.

I met with Prof. Chiodini http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Pathology/Professor+Peter+Chiodini.htm
who is a parasitologist and we went through the bilharzia angle. I finished taking all of the bilharzia drugs and they didnt seem to make any difference. He thought the dose I took was way too high but said that if any parasites were in my body they were definately dead now. I had loads of blood tests to look at other infectious causes. I also had a lumbar puncture which didnt come up with anything revelatory.

So most infectious diseases have been ruled out, but as there are thousands out there I will continue to be tested.

I also met with D. Scott http://www.uclh.nhs.uk/GPs+healthcare+professionals/Clinical+services/Infectious+diseases+(Hospital+for+Tropical+Diseases)/Infectious+Diseases/Dr+Geoff+Scott.htm
who specialises in TB and it was decided that I continue with the TB treatment until it is finished in January.

On a brighter note, they seem to have ruled out cancer and they are convinced that it cannot be MS.

After being the subject of loads of tests and investigations, the doctors at Queens Square decided they don't have a clue what is wrong and optimistically told me to wait and see what happens in terms of my body.

I haven't made any improvement whatsoever and the doctors have done as much as they can so it looks like it is the end of the road in terms of diagnosis so I need to focus on my rehabalitation.

Otherwise I am happy to be back at Stanmore and the next step is to organise a place to live.

The Wandsworth Occupational Therapist went to the house at Lucien Road and decided I can live in the front room until a suitable property is found which is not ideal as I will have to eat, sleep and s**t in one room for god knows how long. So that is next big hurdle for me to overcome.

This is a scan from August after the surgery - you can see the damage surgery has done to my bones and tissue and how the inflammation has reduced in size.

Unfortunately it has now grown again.

MRI scans

This is a pic from the MRI I had when first admitted to hospital. You can see the tumour/swelling/lesion/mystery guest in my spinal cord

All bets are off

Just a quick message to let you all know that the operation scheduled for yesterday morning was cancelled as some spinal fluid tests from a lumbar puncture are still outstanding.

In the meantime I am going to give the Bilharzia treatment a go for the next two weeks and see if that works. Pretty much every doctor seems to think that it is a waste of time but I have nothing to lose really.

My surgeon at St. Georges and the one from Queens Square had a meeting last night and seem to think that surgery is inevitable due the growth of the tumour/lesion so I will have to have excision surgery at some stage unless it miraculously disappears.

Thanks for your messages/emails/texts.

Update

Thanks for all of the messages and support over the last couple of weeks.

The situation so far is that the doctors seem to think I have a tumour as MRI's have shown that the lesion has grown considerably and my spasms and pain have increased dramatically over the last few weeks.

Doctors who Jay and my family have been in contact with seem to be of the opinion that a tumour is the most likely cause of the paralysis.

This means that I am due to have emergency surgery where they hope to excise the tumour or worst case scenario perform another biopsy. This is obviously a pretty major setback to my rehabilitation as further surgery will completely remove aany chance of recovery. However, leaving a tumour can potentially be very damaging to my body.

I am being operated on tomorrow at the RHOH (Stanmore) so more of the same really but at least I get to have more morphine on tap...

I am sorry I haven't been able to personally reply to your messages but there simply aren't enough hours in

This is the zip in my back from the operation and is where the lesion or growth in my spinal column is.

That scar is six hours worth of surgery and still hurts like a bastard.

Woo hoo

In the spirit of trying to make me feel better my physio took me cycling today. Basically I sit in my wheelchair close to an electric cycling chair and the machine does the work.

Obviously my legs don't work so my feet get strapped into moving pedals and I sit in horror and the machine and my legs cycle away while I pretend I am actually moving my body.

The whole experience is surreal as I haven't moved my legs in over 60 days and to see them moving was pretty gutting as I knew that the machine was doing all the work.

Apart from that little bit of excitement it was another day of wheeling around the corridors of the hospital in a vain attempt to find a bit of action. I don't mean to find prostitutes or a fight but something to do. Hopefully I'll get a digital camera that works so I can post some pictures.

Until then it is back to the internet to find out what developments have been made in stem cell research or what the going rate is for a pair of limbs in cambodia!