Turns out I am unable to sleep quite yet (how surprising) anyway I was at Kings yesterday. Left the house at 7am for a 10am appointment (I hate London sometimes)
So I see the doctor who took a full history properly from me, went through everything. He told me I was complicated (I already knew that) basically, he said it is obvious that my pressures are still going crazy. He also did some crude eyes tests which show a marked deterioration in my vision since October. I am really upset about this because SGH had a chance to stop this and chose not to, that and I need my eyes.
I am had a CT scan today and he is going to talk to his boss doctor to check his plan, but basically he doesn't want to hang around with this as my sight is getting worse so quickly. He is going to get some records from SGH, and contact me in the next few weeks. He wants to admit me one day, do the LP and then if the pressure is high he will arrange a shunt to be done before I am discharged, within a day or two of the LP. Those of you who don't know I am in Southampton and my hospital is London, which is about 90 miles and so he doesn't want to do the LP, send me home only for me to have to come back up (spending £50 on travelling)
Also, my pulse has always been a little bit silly, goes very high with no reason to, pretty common with chiari. Yesterday it decided to play silly buggers whilst I was having the pre appointment checks with the nurse. Was bouncing around between 140 and 170BPM and they didn't like it, not with my normal blood pressure being about 95/50 ish. Anyway, Southampton ignored it but he sent me for an ECG this morning at the hospital and has put me on the books to see a cardiologist if the shunt doesn't reduce the pressure and make my heart behave!
So that is a rough guide of what has been going on.
I am seeing my eye doctor on Monday so will update on how my eyes are doing. Have a wonderful day!
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