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SAH experience with strange walking problems

Guest Mary J

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Hi everyone, I just introduced myself yesterday. I had my sah on lst may 2006, and was pretty good for about a month until my walking started to deteriorate. I would walk ok sometimes and then Id start to shuffle, like Parkinson’s gait, then the worst: I would sometimes start to run involuntarily. It was very scary, and also meant that I couldn’t go outside on my own. I also had problems with bladder incontinence and my neurologist had prescribed two conflicting medications, which my neurosurgeon told me to discontinue. I was told that the problems were caused by hydrocephalus (fluid on the brain not being drained naturally) The doctors said the only cure was a permanent drain being inserted and would have to be done locally as they tend to need to be adjusted quickly. After I discontinued the medication , the problem gradually went away without insertion of drain., which was a great relief. I think the worst part of all of this was that no-one seemed to know anything about , or ever have heard of “the running†When I told the Surgeon who did my operation initially about it, he turned to the Neuroradiologist and said “that’s a new one for me, have you ever heard of that†and the answer was NO! I eventually found out that it’s not that uncommon, so if this helps someone who thinks, like me that they are going mad, then that’s great!

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Hi Mary

Thanks for the info - there seems to be so much that the surgeon/consultant/gp says shouldn't/can't/won't be related to SAH when what we all experience seems to discount that. Must have been really scary though, not to be in control of your walking or movement.

I do think that the experts should listen and take seriously the experiences of their patients, i.e. US. After all, the customer is always right!

Sarah x

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