Monday July 21st

Message from Tom:
I have been busy over the last couple of weeks recovering stamina and strength and trying to keep up my nutritional balance. There has been intense planning on lots of people’s parts to realise this trip to Switzerland and we are almost there. We leave tomorrow at 1 p.m. for a 14 hour journey to Nyon for a eight day holiday at paleo Festival. I have met lots of interesting people this week one of whom is in a similar position to me (c4 complete, is no movement below shoulders) but 26 years on he was teaching me lots of ingenious but simple techniques for achieving seemingly impossible tasks. I met another patient who was a 16 year old boy with a C5 complete injury who was being extremely brave.

PS We arrived safely in Nyon, Switzerland, at 7am Tuesday 22nd July and were listening to the bands at the Paleo festival by 8pm. We returned in the evening July 29th after a great week.

Strike three and the plate is out

since my last post I had bad fevers which prompted scans to check the metalwork in my neck was still stable, the scans showed an excess of air in a pocket around the metalwork despite continuous antibiotic treatment for the majority of the last 15 months.  The scans also showed that two screws were missing from the metal plate one of which was later seen in my descending colon from abdomen x-ray.  The conclusion was that the metalwork needed to be removed as it was acting as a catalyst for the infection and my body would have much better chance of fighting it without the presence of the foreign body.  I therefore underwent surgery to remove the whole of the metal plate and screws between C4 and C7.  There was another complication, the screw had created a whole in the back of my oesophagus (a fiscule) which meant that food, liquid and air could leak into my neck and cause infection.  A few days after the operation my neck swelled excessively due to surgical emphysema where air get trapped between tissues, I had a neck drain removing blood and other fluid from where the metalwork had been removed and a nasogastric tube was inserted into my stomach from my nose so that I can be fed without swallowing (swallowing was causing air to be injected into the neck through the hole in oesophagus).  The drain has been removed, swelling has reduced although it still looks like I have an egg beneath my skin on my neck.  I have been getting up into my wheelchair for a few hours today and yesterday and I’m feeling much better mentally, this operation I have managed to stay away from strong pain medication and have managed to keep healthy in terms of respiratory systems, I feel I have learnt ways to keep recovery period as short as possible through previous operations.  I will have to be fed and watered through my nasogastric tube for a little while yet while we wait for the hole in my oesophagus to heal.  I’m still hoping to be able to go to a festival in Switzerland at the end of July, something we have been planning for a long time, but we will have to wait and see.

Third time lucky?2

Monday July 7th

I saw Tom on Monday. He was in fine form, definitely getting better and eager to be allowed up out of bed. He is attached to various tubes – for nutrition, treatment, drainage and so on, but both his surgeon and clinician were encouraging about his progress and I suspect that he will be getting up today. He is doing computer programming right now to keep his mind busy, though was also able to watch some Tennis over the weekend, and Ellen, Susie, Michael, Suzie (his assistant), Louise (Ellen’s sister) and other family and friends have been visiting him in St Andrew’s ward. Thank you all for the messages.

Good Progress

De: drsusie123@aol.com
Date: 02.07.2008 03:28
À:
Objet: Update on Tom’s 3rd operation ( 1st July 2008)

Dear all,

Some of you know that I came back early from Italy this last weekend after hearing from Tom that his CT scan showed more grumbling infection in his neck, despite recent intravenous antibiotics. The neurosurgeon he saw on Friday proposed removing the titanium plate which was changed last August, to help resolve the infection.

David was with Tom over the weekend; I arrived late on Saturday, and met the 2 consultants involved with Tom on Monday before the final decision to operate.

So that’s what happened today; the metalwork is out. It was a 3-hour operation, and Mr Jamous is cautiously optimistic that the bone at the back and sides of Tom’s cervical vertebrae will provide enough strength for him to continue his rehabilitation where he left off, without putting in more metalwork. It seems that Tom may not even need to wear a ‘collar’ or neck brace this time round – this is much better than what we had envisaged.

Tom now has a beastly sore throat with lots of swelling, and is ravenously hungry after 24 hrs of starvation, but was cheerful and alert when I went to see him immediately after the operation. He stayed awake and watched Wimbledon with Ellen all evening. He’s back on the acute spinal ward for a while, but if all goes well he will soon be back on St David’s, the rehabilitation ward.

Scary times, but it was entirely wonderful to see Tom looking strong and apparently undaunted after yet another operation. It does seem worth a great deal of short-term discomfort to be rid of the source of continuing infection.

We are so grateful to everyone who has written to Tom or posted comments on his website, and of course for magnificent support for the Pavilion Fund. I am meeting the project manager David Kemp again soon, to move on from the drains and ground clearance stage – alas, no more rhubarb grove beside the walled garden – with a view to getting started on the Pavilion structure, which will house the Exuberant Trust’s grand piano and performance space, as well as Tom’s stack of computers..

More anon ..
Susie

PS .. For anyone who wants to know more about how patients survive and move on after spinal injuries, Tim Rushby-Smith’s fast-paced, unputdownable, autobiographical ‘Looking Up’ – recently published (May 08) – is a must. Our 2 copies are looking distinctly dog-eared after going round the family. Tom would have liked to go to Tim’s book launch in May, but missed it because he had not been feeling well that week, and because he didn’t then have a PA to drive him up to London. Now he does have a PA, and once the infection settles properly he’ll be even more resilient and active than before.

Under Doctor’s Orders

Tom asked me to update everyone with his latest news:

“I met my surgeon on Friday and he says the only way to get rid of the infection in my neck is to remove the Titanium plate. I am due to have the operation later today – Tuesday July 1st. Rather short notice, but it seems that it is essential, so here goes again. I am back to St Andrew’s Ward tonight. More news in a day or two”.

14.15 message from Susie “Tom is awake with a very sore throat but fine in every way. Surgeon happy. Me too”