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After I returned from a holiday in France at the beginning of September, I received a letter for a final appointment with my neurosurgeon. It was for 10 September, and was to ask a few final questions. He told me that the waiting list was between two and four months. Imagine my surprise when I received a letter telling me that the surgery was scheduled for 6 October - less than one month after the appointment. I had told him of some of the deficits that were advancing rapidly.I had to attend on the Friday beforehand to "have bloods taken", according to the letter, so off I went, and arrived at 10:30 for an 11:00 appointment. I expected to be back well before lunch, as the letter said it was just to have blood taken. At 11:45 a doctor came along to take my blood, and told me that I needed to pop down to the EEG department to have a couple of tests done. A porter arrived … with a wheelchair. Having walked onto the ward, I was then not allowed to walk any further, it seemed. So off we went, with me having the experience of a wheelchair user ….. everyone looking straight over the top of me at the porter, and no eye contact with me. Quite an experience. Although I was feeling like a real fraud, being pushed in a wheelchair when I felt quite capable of walking, it was a long way, so when I realised just how far it was, I was quite grateful. My walking had become difficult at that point, and I would have had to stop several times along the way. So we arrived at the EEG department, and they asked me to go into a room and roll up my trouser legs. They attached some electrodes, and started to send electrical impulses down my legs, making toes wiggle, and making muscles work that I have never been able to work in my life. The tester told me that the responses were being measured so that they would have a comparison when I was in theatre on the Monday. They were going to be monitoring my nerves all the way through the operation. This was something for which I was very grateful, having heard that sometimes this is not done in the States. It is important so that they can tell which nerves do what, because in spina bifida the nerves are usually fairly messed up. When the tester had finished with me she said that I would see the Neurology Registrar next, and there was little wait before he arrived to escort me to his consulting room. He did further tests with electrodes on my legs, then asked me whether I would mind if he did more tests which meant putting needles into the muscles of my legs and passing an electric current through to gain further information. Not being worried by needles, I agreed readily - the more information they had, the better would be the chances that unnecessary nerve damage was avoided. Whilst this was a little uncomfortable, it didn't hurt. After this, the Registrar showed me on a map of the body which nerves were deficient already, mainly from the surgery I had at birth, but some from the subsequent deficiency from my tethered cord. As with many spina bifida people, the nerves which supply my body from the waist down are not always the usual ones, and some inconsistencies are there. He had finished with me for the day, so a porter was called to return me to the ward, where more lay in store. This time, I managed to persuade the porter that I was able to walk to the ward, and he left the wheelchair behind. We arrived at the staircase leading up to the ward, and the porter said that we had to take the lift, so we waited for the lift, and waited, and waited….. Eventually I said to him that I was quite capable of getting up the stairs, and had done so earlier. He said that he had to take me up in the lift, so we waited again. At last I managed to persuade him that I would not trip, slip, tumble, stumble, flounder, fall, slide, wobble, topple, capsize, stagger, totter, teeter, lurch, or anything else he cared to think up. So we ascended the stairs in half a minute, having waited for the lift for more than ten! The next consultation was with one of the Senior House Officers (SHO), who "clerked" me - asked me about myself. By this time it was well into the middle of the afternoon - and the letter that had called me said that I was to attend just to have blood taken. Having expected to be there for half an hour or so, I hadn't brought any lunch with me, so I asked him if I could pop down to the shop to get a Mars Bar to keep me going. He agreed, and off I went, using the stairs that, apparently, I was incapable of using! When I returned I ate the food I had bought and waited for the SHO to come back. He did, and he asked me many questions, tried to obtain a reflex in my ankles (everyone I saw tried this without success) and examined me very thoroughly. He performed various neurological tests of his own, and said that a ward round was taking place which he needed to attend, and that the Consultant would see me soon. So I waited, becoming a little down for a while, until the Consultant appeared with an entourage of about eight others. Once more, I was examined and displayed, then the room became empty as I was left to wait for the return of the SHO after the ward round. I awoke to see the SHO beside me. I had dropped off to sleep for a few minutes whilst I waited. He continued, and eventually we came to the consent form. I read it, and saw that it said that any surgeon chosen by my Consultant could perform the surgery if necessary. I had come to trust the Consultant utterly, and didn't want anyone else to do the surgery, so I didn't sign the form. I wanted to discuss it with the surgeon first, to tell him of my worries if anyone else should take over. At last, at 5 o'clock, they had finished with me and I went home. |
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