mpsgirl
09-22-2007, 01:41 AM
I have some more updates, I hope you guys are not getting sick of my talking about this never ending sega that is my care and headaches. It is just that it is ceaseless and frustrating and I need to talk about it to survive it.
The new plan it seems is that Dr.Dickson and her team may do the reservoir implant in my brain and then do serial CSF taps to check pressures, or they may do a 24 hour bolt to monitor pressure continuously for 24 hrs. Or they may just go ahead and do the VP shunt placements - I guess I will know more after Dr.Dickson talks to her NS here at UCLA-Harbor next Tues. I told her I flat refused to have them do the reservoir b/c it would end up being 2 surgeries, they could do the 24 hour bolt but I prefer they just the shunt.
I am getting sicker and sicker with headaches and more and more problems lasting longer every week, not getting better but worse. Bc my pressure doing the LP the other day was 16 (high end of normal) they now think my pressures might be normal) but remember last month it was 26 measures above my compression and headaches always get better after taps.Also my LP shunt is working intermittentaly so of course the pressure is going to be lower at the LP site - and my compression/narrowing at cervical spine is so narrowed that very little fluid gets through so another reason why it would obviously be lower below than above directly measured from my brain.
I finally called my Genetic Counselor today nad asked her to have my Geneticist talk to the NS who did my other surgeries so i can get in to him b/c this is a never ending saga with all of my other drs. and their being so indecisive and I just need to have this surgery be done so I can have my life back and do things besides sleep again and deal with headaches. I guess I should know more after Tuesday next week - please say prayers if you mgiht for my drs. and for me that something, something gets done very quickly.
The new plan it seems is that Dr.Dickson and her team may do the reservoir implant in my brain and then do serial CSF taps to check pressures, or they may do a 24 hour bolt to monitor pressure continuously for 24 hrs. Or they may just go ahead and do the VP shunt placements - I guess I will know more after Dr.Dickson talks to her NS here at UCLA-Harbor next Tues. I told her I flat refused to have them do the reservoir b/c it would end up being 2 surgeries, they could do the 24 hour bolt but I prefer they just the shunt.
I am getting sicker and sicker with headaches and more and more problems lasting longer every week, not getting better but worse. Bc my pressure doing the LP the other day was 16 (high end of normal) they now think my pressures might be normal) but remember last month it was 26 measures above my compression and headaches always get better after taps.Also my LP shunt is working intermittentaly so of course the pressure is going to be lower at the LP site - and my compression/narrowing at cervical spine is so narrowed that very little fluid gets through so another reason why it would obviously be lower below than above directly measured from my brain.
I finally called my Genetic Counselor today nad asked her to have my Geneticist talk to the NS who did my other surgeries so i can get in to him b/c this is a never ending saga with all of my other drs. and their being so indecisive and I just need to have this surgery be done so I can have my life back and do things besides sleep again and deal with headaches. I guess I should know more after Tuesday next week - please say prayers if you mgiht for my drs. and for me that something, something gets done very quickly.