Mark home again

It's two weeks since I updated the blog and those two weeks have passed in a blur. We've had the keys to the house and we've spent the last week trashing it, or so it seems when I look at it now. A bit more trashing today and we should be on the putting back together from next week. Hoping to have enough done to move in early May.

Mark has made some progress at Pinderfields, namely he has identified the action that sets off the severe pain, so knows to avoid it, unfortunately that action includes actually pushing his wheelchair, so he has to limit that and will probably have to change his wheels for assisted ones at some point. The Psychologist sent her report to Mr Raza (consultant at Pinders) and it couldn't have been a better slap in the face for him, it stated quite clearly that Marks state of mind was extremely good considering his situation and that it was obvious to her that his problem was medical and not in his head and she strongly advised seeking a second medical opinion because if they didn't get to the bottom of the problem that could cause a longer term negative mental attitude. It couldn't have been better if we'd written it ourselves!!

While he was at BRI he had some of his meds changed, which helped a lot with the associated pain when his back went mad, when he got to Pinders they didn't know most of the new drugs, and this is a dedicated spinal centre!! Although nothing surprises me anymore. So now we're still waiting for hear from Birmingham, that could take months. No carers, even though they've been requested for a week, so it's all down to me now .... I put on weight while Mark was in hospital, all that sitting around doing nothing, but with house decorating and now doing all Marks care I'll be a a bag of bones again in no time.

Now Mark is going to be spending some time at the house, terrorizing everyone who is doing any work and generally behaving like the control freak he is ...... I should be grateful he is up to it .... or should I????????

Moving on in some areas .....

Later in the day that I wrote the blog last week we got notice that our boat had sold. That came with really mixed emotions. Intellectually and logically is was absolutely the right thing to do and we're relieved it went quickly. Emotionally, it was the last nail in the coffin of our old life, it was a serious meltdown point for me and Mark and I were very subdued the next day. We've all made major changes to our lives and sometimes those changes are upsetting, may leave us angry and with some regrets, but the difference is we MADE those choices. When a major change that wasn't our choice is forced upon us it leaves you with a feeling of helplessness, the inability to control so many aspects of your life. You feel like you're at the center of a whirlwind, everything is whizzing around you but you can't grab hold of anything. Now the boat has sold, the physical link with our old life is well and truly broken. The brilliant friends we made have carried us through the trauma and they will stay with us. Going forward .... here's Marks new house ...

now our efforts have to be looking forward, workmen making a mess and paint brushes ... making a home is the new challenge.

Mark is still in Pinderfields, he's spending some time each day up in his chair, but still spending way too much time in bed still in pain. His Consultant has finally written a referral to a consultant in Birmingham, but it could take another week before it actually goes. Nothing moves very quickly in the NHS!! While he is up he has been able to do some exercising in the gym but has to be careful with some movements that set off the severe pain. His consultant still thinks it's in his head we're convinced of that. The Physio's have seen it happen now so they know it's clearly physical not mental. He's fed up not being able to get to the house and get on with things, he's frustrated being constantly in pain and he's angry he can't get on with his life, but amazingly his spirits aren't too bad considering. I don't think I would be handling it as well. Having said that, Mark messaged me this morning saying if it was the other way round he wouldn't be handling things very well and would probably be living in a box!!

A week of mixed feelings

I feel we're having a schizophrenic week. The lows of Mark back in Pinderfields and what should be a high of successfully buying a new house. On almost an hour by hour basis I can feel the satisfaction that we're finally moving on by finding our base to do so and the depression that Marks current problems have set us back. Mark, understandably, is more focused on the set back. The frustration he feels not only with his physical pain, but the real difficulty of dealing with his Consultant who is skeptical that there's anything seriously wrong with him. It's hard enough that you're going through such severe pain, but not having the one person who can do something about it writing you off as having unrealistic expectations is depressing.

Mark started his stay with a very heated discussion with Mr Raza and Mr Raza (in Marks words) threatening to throw him out and have nothing more to do with him. So now that they're at rock bottom in their relationship where do they go from there?? Well it did improve a little with Mr Raza reviewing Marks notes, sending him off for another x-ray of the area that Mark is indicating the pain is coming from and agreeing to sending his notes and scans to the syrinx expert in Birmingham. Mr Raza is still adamant that's not causing the problem, and Mark is now inclined to believe him but he's keen for someone else to look at the problem as a whole and maybe have an alternative view. The x-ray was inconclusive, Mr Raza had a thought that one of the screws in the fixture might be the problem, but none of the scans indicates that. I think the fact that Mr Raza has the spotlight on him by outsiders, has maybe mobilized him to some extent. His behavior still confounds us though, after insisting Mark see a Psychologist he seems reluctant to read her review - is that because really he knows it's not in his head? He is also adamant he doesn't want to speak to the Physios who witnessed and documented one of these attacks while in BRI. It seems collaboration is not a discipline much used in the NHS. Luckily, I use the word not in a positive sense but a practical one, Mark has had one severe onset of this back pain and subsequently spent all yesterday in bed and had a dysreflexia attack during his toileting time. I used the word luckily because we need the professionals at Pinderfields to witness these sudden onsets of severe pain to encourage them to try and get to the bottom of them. Our hopes are that they eventually do just that.

Today I pick up the keys for the new house .... at least getting cracking with some painting and adaptations for Mark gives me something positive to do. On the other hand getting started on anything when Mark is not there to tell me I'm doing it wrong is seriously frustrating him. I'm walking an emotional tightrope and its slowly beginning to sway.

Send positive thoughts to keep the sway under control, she cries!!!

Next week some piccies of new house.

Mark back in Pinderfields

Carrying on directly from the last entry .... Mark spent some time in his wheelchair on Tuesday with no immediate problem. Through that night he was back on Morphine every 2 hours for the pain. Wednesday in pain most of the day and when the Physio came to get him up, he was in too much pain to try.

Thursday morning and finally a visit from the Consultant in charge of Mark while he's in BRI. Mark was supposed to discuss his sending Marks notes to the expert on syrinx in Birmingham, but the conversation got railroaded with talking about sending him home. Somehow, don't ask me how, I wasn't there, they got onto the subject of more Physio at Pinderfields. Well that got some action, Mr Taggart (BRI consultant) rushed off determined to get him back into Pinderfields. Think Mark was left a bit open mouthed, he's not used to not having the last word!

Thursday afternoon he had another visit from the Psychologist, she had just arrived before me at visiting time. We discussed the difficulty of getting Mark referred for further investigation, particularly Mr Raza's reluctance to refer him to a specialist in Birmingham who is 'the man' for anything to do with syrinx. She understood there could be professional rivalry or ego involved, yet again the patient is not at the centre of any decisions needing to be made.

Thursday afternoon. The Physio came back to try and get him up again and Mark agreed. It's not like he wants to be lying in bed day after day, week after week. So they get him up in his chair. He was in less than 5 minutes when it happened again. Excruciating pain in his back. This time with medical professional witnesses. They poked around his back and they all concluded it was coming from exactly where Mark has been saying all along and that's in the area at the bottom of his fixture. However much I was upset that Mark was in pain again, I had to see this as a good thing, someone who couldn't be ignored had now witnessed it and documented it. More morphine for poor Mark.

Behind the scenes, Paul Smith, CEO of Spinal Injuries Association had a long chat with Mr Raza (Pinderfields consultant) while they were both at houses of Parliament, trying to argue against the closure of Pinderfields Spinal Unit. Although Mr Raza is not altering his opinion on getting a second opinion about his syrinx, he is very much aware there are a lot of people now watching how Mark is treated as a spinally injured person. Maybe, just maybe it might have a positive outcome as to how others are treated when this is all sorted. It patently clear getting anything other than basic help in our NHS is not working. With the changes now coming in, it's only going to get worse as everyone protects their own little fiefdom.

8.45 last night he was packed up and sent off to Pinderfields, one of the ambulance guys took him from Airedale(where he was in ICU) to Pinderfields, another was on duty, taking him from Hewenden to BRI TWICE. We did have a giggle about that. He was finally settled in bed just after midnight.

Will be interesting to see what happens now that Mark is in front of Mr Raza and Mr Raza knows there are a lot of people watching the outcome.

One year on ....

It's difficult to describe how I feel one year on. Mark still in hospital and our life seems in limbo. Sometimes it seems the last year has passed in a blink of an eye, sometimes it seems like our life has always been like this. We're nearly owners of a house again, and nearly not owners of a boat, both fairly major things but in comparison with Marks health and rehab, it's so minor. I watch life going on around me and wonder when ours will start again. We had a visit from an SIA peer support person when Mark first moved to Pinderfields. One of the first things he said was ... it would be two years before we start moving on with our lives ... I was shocked and taken aback. One year on and I now understand exactly what he was saying, but it was hard to take that in at the time.

Over this last week, he has thankfully shown some improvement and is having less bouts of the really serious pain. At the same time his consultant at Pinderfields and the Registrar at BRI have pushed him to see the pain team again and see a Psychologist. They think it's all in his head. So he's seen the pain team had some of his meds changed, it's not evident that they've made any difference yet, he's also spent time with the Psychologist. After an hour with her she said it was evident he doesn't need a Psychologist, whatever was wrong with him it wasn't in his head. So he's jumped through all their hoops, but because they've decided there's nothing more they can do for him so they're sending him home. We're both very tired of trying to fight the system. It's down to me now to look after him, no-one is interested in trying to get to the bottom of the problem.

He has got up in his wheelchair today, a move forward thankfully and now the Physio at BRI is trying to get his new chair to make sure it's right for him. Clearly the support provided by his chair is going to play an important part in not aggravating whatever is wrong in his back. We've come to realise the majority of the people we have met in this journey of Marks rehab are of VERY average intelligence and it's seriously hard work dealing with them.

Another expert ... another door closes

Mark is still at BRI and his condition continues to worsen.

Mr Timothy's team in Leeds has seen Marks CT Scan and MRI along with the Radiologists report, so has Mr Raza at Pinderfields. We have a copy of the report but as you can imagine there is language and phrases that we do not understand. What is clear is the way Marks problem is manifesting itself, has not been relayed to Mr Timothy.

An extract from the report by the radiologist under the heading 'Impression' ...

CSF density intra-medullary legion posterior to C7 and T1 vertebral body. Appearances are consistent with post-traumatic syrinx formation.

AC - Urgent Finding: Urgent clinical review is suggested in light of the radiological findings as detailed in this report.

Reported by DR A S Lowe

Consultant Radiologist

We have no idea if that clinical investigation has been carried out, it certainly has not been carried out with any input from Mark, which you would think would be fundamental to getting to the bottom of the problem.

Mr Timothy's team at Leeds has come back and said from what they see on the CT and MRI they don't want to see Mark as his position, in their view, is not of a critical nature. Their only suggestion was the implant of a pain blocker under the skin above his fixture is C4/5. The door has been firmly closed, they're not willing to discuss it any further even with Mark.

We had a visit from the consultant anesthetist this morning whose contribution was to change his drugs to manage the pain and see a psychologist. What's causing the pain is not his department, there's nothing more he can do.

Mr Taggart at BRI can do no more either, it's not his field of expertise.

As you can imagine we're becoming frustrated and concerned as no one seems willing to explore what's causing the problem, only cover it up with more pain medication. We're at a loss as to know what to do next.

I've emailed the Chief Exec at Spinal Injuries, who has been very supportive and has emailed Mr Raza at Pinderfields to try and get him more involved again. I've copied that email to our local MP and Melanie Sykes at the Times. The MP responded and asked if there was anything he could do to help, this was my reply ......

Dear Philip

Yes you can help, at the very least by asking questions as to why my husband is being failed by the NHS on a number of levels...

firstly that no-one is taking the situation regarding his problem seriously

secondly,why I have had to take crucial drugs in from home because they couldn't, wouldn't or had forgotten to order them from the hospital pharmacy

thirdly, that a spinally injured patient requires specific help with bowel management when they are bed bound, which requires a practice that has been outlawed everywhere other than spinal wards (I understand why it was outlawed, however, sometimes a common sense approach is surely required)

It has become very clear to me since my husband was admitted, that the care of the patient now comes a poor second to everyone protecting their back, from at a minimum a ticking off, at worse being sued.

Regards

I also copied that to Melanie Reed at the Times.

We will not give up trying to get Mark the help he needs and deserves, but every setback requires more and more energy to bounce back from.

Definitely not going to Leeds

Mark had his MRI Monday this week, we got the results Tuesday and they were sent over to Leeds. Mr Timothy(Leeds consultant) viewed them, had a discussion with the consultant at Bradford and told him he wouldn't be seeing Mark because he didn't think the arthritic growth was causing the problems, therefore it wasn't appropriate to do anything about it. He didn't know what was causing all the pain, it was possible it was the syrinx (the bubble of fluid that builds up around the trauma area) lower down his spine, it could have moved a tiny amount to start making a difference, but he couldn't be sure. His only suggestion was to implant a tens system on the vertebrae above the arthritic vertebrae. This is a system that passes electrical pulses between two points and stops the pain signals getting to the brain. His consultant at Pinderfields is not keen on this idea as the area where Mr Timothy is suggesting is very high up - C4 - and it's a very dangerous area to operate, if anything went wrong Mark would be paralysed from the neck down. We really need to know more about this. I collected a copy of Marks scans this morning and took them down to his consultant at Pinderfields as he hasn't seen them yet.

We both felt very low and abandoned yesterday, it seems no-one is really interested in trying to help him. His consultant at Bradford has been great. He's organised scans that Mr Timothy and Mr Raza (Pinderfields) have requested and tried to get everyone talking to each other but beyond that he can't help, it's not his field of expertise, so there's no more he can do.

So what next.....

We're being passed to yet another consultant at Bradford who does the implants, to discuss options, understand side affects and see what he recommends. If he really thinks the 'tens' system is best for Mark we're going to ask if we can try that with an ordinary externally operated Tens machine first to see if it makes any difference. Mr Raza is also going to discuss the implant option with him and he'll also have some input. So we're no further on and very frustrated.

As time has gone on we're finding out just how broke our NHS must be, in addition to taking Marks drugs in from home because they can't or won't order them, I now have to supply towels for Mark now cos they don't have enough on the ward. Lets see what next Monday brings.