What my brain consultant said

I was writing about my brain haemorrhage on Friday and how I was going to see my consultant neurologist now that it is eight months since that dramatic day which has changed my life.

Well, I guess I owe you all some feedback from the appointment.

To start with, my neurologist, who always has a reassuring twinkle in her eye, said that she thought I looked “great.” I told her that I thought she looked great too.

I guess her observation was more based on science than mine was – I just like to acknowledge charm when I see it.

So that was good news – we all like to look great – she then went on to tell me, in more detail than I had received in her emails, the results of my last MRI brain scan and the conclusion she and the other members of my clinical team had made from it.

Well the blood has indeed receded from being a half a head full to a small circle of about one inch in diameter. This is, of course good news. Less blood on the brain is better than more.

Before the champagne celebration however, she went on to say that the blood was receding much more slowly than they had hoped even though the neurosurgeons had known cases where it had taken up to a year for all the blood to go.

I am, though, one of those people who usually heals really quickly – a cut usually turns into a scab almost instantaneously. The consultant observed that it was unusual for it to take so long for someone who was really fitter than average.

The inevitable conclusion is that the other possibility is now at least more likely than it had seemed last time.

Namely that I had, what the neurosurgeons say is the only possible underlying cause of the slowly receding blood, a cavernoma. That attractively Italian sounding word describes a benign lesion of the walls of the veins which may well have been the reason for my brain haemorrhage and its accompanying brain seizures which fractured my spine and tore most of my torso muscles.

It is still not definite but it is now more likely that, after my next scheduled brain scan in October, that this cavernoma will be discovered and that brain surgery will follow.

This is an operation which basically involves cauterising the lesion and, if successful, will end the problem and ideally lead to my complete recovery.

In some ways, scary though brain surgery sounds, something as definable as a cavernoma may well be a more satisfying conclusion than the still unknown reasons why I should have had that near death experience on 30th. October last year.

So far so good. Sadly the question of the most obvious sign of any brain damage that I may have incurred, my stammer, is getting worse.

Not the end of the world, of course. Stammers are merely stammers and I am sure that I can get used to it. Someone told me recently that it was in fact an improvement which made it look as it I was actually thinking before I said anything – which is not always the case.

The negative side is that there had been always an element of hope that focused on my being left-handed.

My haemeorrhage occurred in my left frontal lobe which is the normal seat of such functions as speach and the understanding of language. It had always been thought that it was fortunate that I was left handed because left-handers are usually right brain dominant which would mean that those important language skills would be centred in the right frontal lobe.

My stammer indicates that this may not be the case so the expected operation will be consequently riskier than it might have been.

I don’t know of course that I do have one of these cavernomas. There is a test that I could have to detect it, something called an angiogram which involves a dye being injected into the groin so that it will circulate through the blood system to the brain and where it will show up the condition of veins up there.

Apparently the surgeons decided not to do this now as there is a risk involved (only 1%) – small particles of matter could be sent to the brain which could result in a stroke. They decided it was better to wait and see what the October brain scan reveals. If the blood has not cleared by then, this angiogram will have to be used so that surgery can follow if necessary.

Wow! Sorry to go all scientific on you but brain damage is quite a big deal.

So the waiting game continues.

In the meanwhile, I am being weaned off the anti-seizure drugs – surely a good sign even though it will take 14 weeks to get to zero. I have to reduce the dosage by 50 mg every two weeks – a challenge for my arithmetic. The danger of coming off too quickly would be that it could spark another brain seizure.

I will be monitored for anything worrying during this period – any suggestion than I might be having seizure-like symptoms will result in rapid adjustments to my medical care.

I am coming off the drugs not just because I may well be getting better but also because Epanutin, the drug in question, is having a negative effect on my liver and blood count. I may have to go on to some other drug if my symptoms return.

I was told, yet again, that I have to rest. This time my neurologist felt the need to double stress what rest means. When I am tired, I don’t read a book, listen to music, write on the computer, twitter or practise taichi. When I feel tired, whatever the time of day or night, I must lie down and go to sleep. OK, I understand. I will stop fighting this and obey instructions.

She also said that I should try to curb my enthusiasm for things that I could do next year rather than this. “I am expecting you to be alive next year” she said with a knowing look.

To help my recovery I must not only rest but I must avoid any possible activity which would make any impact on the brain. Not only can I not go bungee jumping in the foreseeable future but must not make sudden head movements of any kind.

So, my friends, it is good news in a way. I do feel better, I look great (apparently) and there is a good chance that I am actually just getting over this thing.

A few risks apart, the bottom line is that I shall have brain surgery which could sort everything out.

So I am not complaining. I would be lying though, if a couple of days after this consultation, I was not having a few thoughts which Wordsworth should have called “intimations of mortality.”

It has been a wonderfully hot and sunny weekend. The world seems a beautiful place and brain damage allows me to celebrate things that others may see as banal and obvious. I feel liberated, excited and intoxicated by the possibilities of life and the thought of losing what I have will take me through the anxieties and force me to obey the doctor’s instructions.

Anyhow, being told you look great is more than enough for anyone of my grossly elevated vanity. When I got home, I checked in the mirror. Well, I thought, a guy could look worse – I definitely looked more of a wreck a few months ago. Maybe I am getting better after-all. You betcha!

2 Comments

  1. Hi Wolfie, I read your blog and I can understand your pain and elation – 6 years ago my girlfiend suffered from brain damage, 6 long years of rehab and pain and suffering. We are half way through her probable recovery (still can't find anyone who can say if and when she would ever fully recover). I wish you all the best in your recovery.

    Simon

  2. Thanks Simon, your good wishes are really welcome and appreciated.

    It is a difficult thing to cope with I know so I truly hope that your girlfriend will make a full recovery

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