mpsgirl
10-08-2007, 05:04 PM
Well todays Appt. was a waste of time and energy and well was a disaster by all means, Dr.I and I did not get off to a good start b/c of a screw up in registration and then I got sick while he was making calls which he accussed me of taking something or being depressed or making myself that way which just pissed me off - so regardless of how well he may be known and liked by others he won't be my NS. When he accussed me f taking something I sat up and started yelling at him, not screaming but vehemntly telling him what I thought - i'll fill that in little after I take a nap but grr he was such a jerk to me.
I did talk to Patti my Study dr at Harbor UCLA and she is setting up some things with her Neurosurgeon/Neuroradiologists to do either the Cisternal Tap next week or a 24 hour Bolt pressure monitoring. She still really wants to get to the bottom of this and get a VP shunt in. Which by the way the NS I saw today says I don't have Hydrocephalus - I have Pseudotumor Cerebri and I should be thankful I am not over draining (Ooh but it is such a jpy to throw up every day even from something as simple as walking, :order: :ohno ) He says he does not deal with Lu,bar shunts but he wouln't ever put a VP shunt in me either - and the C-spine compression/cord flattening/stenosis not an issue to him - just completely blew it off not that I wanted him to be looking at it, but in the scheme of things the LP shunt is what makes it as bad as it is!
I also talked to my old NS's scheduler and she talked to him, he now wants to see me and so i'll do that this week or next (depening on schedule with Dr.Dickson - if i can get back from her by Thurs. the 18th will see him then otherwise this week will see him the 11th.) I'll just explain to him if he's not comfortable doing the actual shunt, then if he can help us with testing and shunt management and be my surgeon here. So it is all very complicated as usual. He had told my Geneticist nad me he did not want to see me, then he told the NS when they talked today on the phine something different and so I guess atleast I am glad I can go talk to him even if I will not ever completely trust him again. Maybe time.
I did talk to Patti my Study dr at Harbor UCLA and she is setting up some things with her Neurosurgeon/Neuroradiologists to do either the Cisternal Tap next week or a 24 hour Bolt pressure monitoring. She still really wants to get to the bottom of this and get a VP shunt in. Which by the way the NS I saw today says I don't have Hydrocephalus - I have Pseudotumor Cerebri and I should be thankful I am not over draining (Ooh but it is such a jpy to throw up every day even from something as simple as walking, :order: :ohno ) He says he does not deal with Lu,bar shunts but he wouln't ever put a VP shunt in me either - and the C-spine compression/cord flattening/stenosis not an issue to him - just completely blew it off not that I wanted him to be looking at it, but in the scheme of things the LP shunt is what makes it as bad as it is!
I also talked to my old NS's scheduler and she talked to him, he now wants to see me and so i'll do that this week or next (depening on schedule with Dr.Dickson - if i can get back from her by Thurs. the 18th will see him then otherwise this week will see him the 11th.) I'll just explain to him if he's not comfortable doing the actual shunt, then if he can help us with testing and shunt management and be my surgeon here. So it is all very complicated as usual. He had told my Geneticist nad me he did not want to see me, then he told the NS when they talked today on the phine something different and so I guess atleast I am glad I can go talk to him even if I will not ever completely trust him again. Maybe time.