Photo by KasugaHuang
I had to have an MRI scan today, it was needed to rule out any other possible causes for my hearing loss, but they are almost certain it is caused by nerve damage. Robbie offered to come with me but I said I would go on my own, after all it was no big deal. I didn't really like the scan. I had to remove all the metal on me or on my clothes, then I had to lay down on a narrow bed with a special area for my head to help me hold my head still. The machine was very noisy so I had to wear ear protectors, but I declined the option of listening to music. The bed was gradually moved into a narrow tube, it made me think of a coffin being buried, so I closed my eyes and thought about my family tree instead. It was incredibly noisy, I didn't like that but I knew it wouldn't last long. The whole process took less than ten minutes, but I felt very dizzy afterwards. It was certainly not as bad as a mammogram but I'm glad it is over.
Robbie and I were rather anxious when we went to the hospital to see his consultant yesterday. We were surprised to find that we didn't have to wait very long until Robbie was called into the consulting room. The consultant explained that the MRI scan had been worthwhile because they were able to get some good pictures of Robbies spine and the pictures had been reviewed by a specialist at Oxford. As expected there was clear evidence of the damage caused by his spina bifida and they could see that his spinal cord was significantly longer than normal with less smaller branches coming from it. The good new was that there is nothing on the scan pictures to suggest that there is any tethering of the cord at the moment. There were words of caution too, Robbie should never have a lumbar puncture or any procedure on his lower back because it could cause serious damage. So the messsage was to keep walking, to accept the falling over and the pain as just part of him and to take great care of his lower back because if anything goes wrong with it they will not be able to put it right. It sounds a bit grim and it would have been nice if we could have found a way to stop the falls and to deal with the pain, but we didn't really expect that. I think we just have to be grateful that the news was as good as we could have hoped for. So now he just has to learn to bounce when he falls over and hopefully he will try not to fall in front of a car or a train!
Robbie scares me sometimes. On Tuesday evening he was watching How to Look Good Naked, he and Sam love watching it, I can perhaps understand why a 13 year old boy would be interested in women taking their clothes off, but judging by the giggles and the school boy banter, Robbie is still very much in touch with his 'inner child'. On the program the woman's photograph was put on one of those huge advertising posters on the side of a building. I was just thinking that I couldn't imagine anything more embarrassing, when Robbie announced that he would love to have a photo of him naked turned into a huge poster like that. As far as I am concerned that would be grounds for divorce! Can you imagine walking out of the station at New Street or Euston to encounter Robbie larger than life grinning down at you in his birthday suit. It would cause mass hysteria with people fleeing in all directions.
Talking of hysteria, there was a fair bit of that going on yesterday evening. Robbie went for his MRI scan, he was very anxious about it and he got himself in to quite a state before the appointment. Afterwards he was very pleased with himself, to hear him talk you would think he had survived torture. I listened for a while, then I reminded him that it didn't involve any pain, nothing was poked, prodded or pressed. I suggested that if he'd survived a mammogram or certain other intimate procedures I would be much more impressed. At least it is done now and he doesn't need to worry about it anymore. We will not get the results for a while as we have to wait for his consultant to contact him.
I took Robbie to the hospital for his tests this morning. I was asked to go in with him which turned out to be a very good thing. He had to take off his shoes and socks and pull up his trouser legs, then he had to lie back on an adjustable chair like the ones dentists use. The tests only took about fifteen minutes and I don't think Robbie found it too painful, but it did make his legs jump about a bit. The conclusion was that the nerves in his legs are not too far from normal, well normal by Robbie standards anyway. He likes being unique and his legs are no exception, one is longer than the other and one foot is four shoe sizes bigger than the other, so I think 'unique' just about sums it up. They have concluded that the problem is probably the result of nerve damage in his lower back due to his spins bifida, and this is preventing the nerve messages reaching his legs. They wanted to do an MRI scan to get a better idea of what is going on, but Robbie said he couldn't cope because he is claustrophobic (allegedly). I intervened at this point and Robbie finally agreed that they could arrange an MRI scan, after all if women can cope with giving birth and the many other indignities we encounter, I am sure he can cope with one MRI scan. He will just have to close his eyes and imagine that he is on the bottom bunk of the sleeper train!
Robbie was upset afterwards because it is very unlikely that there will be anything they can do to stop him falling over or to ease the pain, and it makes him frustrated. I think it is always better to know, and it has ruled out a separate cause for the falls so we are a bit further forward. Now we have to wait for the MRI scan appointment and in the meantime Robbie will continue to act like superman to prove that he is OK, but don't worry I have warned him that wearing his pant outside his trousers would be taking it too far - it would be more Homer than Superman!
Robbie went for his hospital appointment yesterday, to find out why he keeps falling over. The consultant wanted to do an MRI scan to find out what was going on, but Robbie suddenly announced that he suffers from claustrophobia and could not possibly cope with an MRI scan. Instead he has to have a CT scan and some other tests.
I was surprised to hear of his claustrophobia, he has never mentioned it since we have been together and I felt that if he had coped without it for this long, he should be able to cope for a little longer in order to have an MRI scan. He has showed no sign of claustrophobia when travelling on the sleeper train, in fact he is very keen to repeat the experience! When I challenged him about his new found phobia he was insistent that it had bothered him in the past. He claimed that once years ago when he shared a tent with the Wild Woman from Walsall he felt claustrophobic. Silly man, that is not a phobia, it is a perfectly natural reaction, I feel claustrophobic if she is in the same county!!
