Posted 10 May 2011 - 09:15 PM
I know I've not been around much.... I've been spending a large chunk of my time at the hospital getting serial lumbar punctures (three to six of the suckers a week!) to try and lower my intracranial pressures (running between 40-60 cm of water... should be less than 15!). My local chiari surgeon is refusing to put in a shunt until I get my intrathecal dilaudid pump out of my spine as he feels that is causing my sky high pressures (even though it's putting out only 1/100th of a mL a day). Tomorrow morning (at 6.30 in the flippin morning... GAH! I don't do mornings) the nsg who placed the pump is pulling the catheter out of my spine (as well as drawing out 30-50 ccs of spinal fluid since Weds are LP days) and deactivating it for the time being.
Currently the hope is that I can have a VP shunt placed by the end of the month as these pressures are wrecking havoc on my optic nerves (they are incredibly swollen with fluid and somedays when my ICP is really high I can't even see right) not to mention the fact that I'm just miserable. Typically with pseudotumor cerebrii the first course of treatment is a diuretic but I can't take those (due to my dysautonomia my blood pressure is *very* unstable and I faint when I am upright)... I did honestly give "diamox" a try but it bottomed out my supine bp to 72/0 so it's a no go... So currently my only option is a shunt. The hope is to have the shunt placed, get my pressures to a more acceptable level and then recconnect the pump so I have proper pain control.
Would just appreciate some good vibes for the morning... This should be a simple outpatient procedure but with my body (or mainly autonomic system) things rarely go as planned. Vibes for proper post op pain control and a stable bp and hr so I can go home would be appreciated.
Posted 10 May 2011 - 09:26 PM
Posted 12 May 2011 - 07:52 PM
Surgrey went well... There is no sign of an adverse reaction due to the catheter that would cause the "aseptic meningitis"... We are thinking the next step is to remove the "icky cow" from my head and a VP shunt. I have another LP tomorrow and it my pressures are still too high I will be asking for an admission so that my chiari guy can place a lumbar drain until he puts in a shunt, as the IR doctors are no longre wanting to do lumbar punctures no me. I see Dr. Oro on Monday so we can talk shunts and the next course of treatment to bring down the high WBC in my CSF (my last cell count was 1287... should be under 10). Otherwise I've just been sleeping off yesterday's "festivities".
At this point in time I'm worried that my pressures will come down to a more normal level and then I won't have a way to make me feel better. Silly I know!
Posted 12 May 2011 - 10:12 PM
Posted 14 May 2011 - 06:18 PM
Posted 15 May 2011 - 09:30 PM
I see Oro (local surgeon in charge of my chiari and related issues) tomorrow morning... I am planning on asking him to just do an admit until he can place the shunt and leave me with a lumbar drain because I am so sick of the lumbar punctures. My cell count in my spinal fluid and my pressures are still way too high... I had an LP through the ER yesterday (couldn't see, projectile vomitting, headache from hell) and my ICP was 37 with a cell count of 149. So I'm thinking that the bad graft will probably be going as well. I won't know what the plan is until after I see the doc, and he will probably want me to go through with the scheduled LP tomorrow afternoon to see if there are any changes.
I am hoping to get an OR date in the morning and will update then. I am just so over this. My current goal is to get the shunt placed this month, recover over the summer and then get back into PT to recondition my muscles (as that is what my body relies on to pump blood as my veins don't work properly) and be at the local college by spring 2012.
If you don't hear from me then you can assume that my "wish" has been granted and my surgeon admitted to the hospital for a lumbar drain to keep my pressures down until I get a shunt...
I think I may take the ER docs advice from yesterday and play the lotto.... The odds of having all of these separate disorders are 1 in 62,500,000,000,000,000 (multiplied the incidence of each separate disorder).
Posted 16 May 2011 - 06:33 PM
Trying to hang in there... If I end up in the ER again tomorrow to be drained I will be demanding that they admit me and transfer me to CU (I have a 2nd opinion with a guy there that was going to shunt me in 2008 for an arachnoid cyst but it isn't until 6/23).
I'm not a mean person to docs but this has really been going on for far too long...
And my nsg is trying to say that I have a gluten intolerance that could be causing the inflammation and pressures... I don't really eat alot of grains and I haven't been able to eat alot the past 3 months due to nausea and vomitting... If that was the case I think that my pressure and cell count would be way down due to the "anorexia" (the symptom, not the eating disorder).
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