"The truth is rarely pure and never simple" (Oscar Wilde). -- This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder.
Thursday, January 31, 2013
Potential change in surgery plan...
Dr.Bragg stopped by earier tonight and surgery is scheduled at 10-to-3 (2:30) until approx 5:00 although that isnt to say the surgery will or wont take that long. She actually had a differnet thought after talking to her partner (see below) so we may end up doing a short procedure or the longer revision depending on what we decide in the morning.
She talked about getting the cardiac anesthesiologists for the surgery (vs neurosurgery anesthesiologists as then less likely to place the lengthy arterial line and better understanding of how my cardiac issues affect the surgery. She mentioned how she can now tell the Anesthesiologists what they need to use if they have questions and is able to describe the aitway structure + the intruments they need to use and describe the airway issues,
She also talked about how we would be having to do cardiac surgery in the future and she really wants to get this shunt stuff figured out in the mean time + she didnt want to do anything to cause me problems but be able to try and figure out how to help me without causing adverse issues.
Her partner is recommending to Dr.Bragg that we do ICP monitoring but blind the results to either Dr.Bragg or myself so Dr.Bragg could get an idea if my headaches where sporadic as far as ICP (intracranial pressure) levels or pretty consistent at one general #when I am having the headaches? Either way I guess she would then take this information after a couple days of monitoring and either find a better valve for the shunts or consult w the Neurologists in her dept and see if they had any med suggesitons. Ive talked to (via text) my Pain Mngmt dr tonight after talking to Dr.Bragg and she is happy to talk to Dr.Bragg and share the numerous meds we've tried + what we've done so we dont re-create that wheel. It seems she may be willing to try what we originally talked about w the other valves first but is going to stop by in the morning after her first surgery so we can talk more and go over any questions she thought up and any questions I wrote down + make our decision. I did send her an article I found on 'negative pressure hydrocephalus' which seems like it may be our issue as it talks about revising shunts, they fail, revising again sometimes even w new mechanics and fail yet again repeatedly. From what I understand in negative pressure Hydro the key is to drain below atmospheric (negative) pressure amd certain positioning.
I feel conflicted, I want to figure this shunt stuff out and on the other hand I just want to be done and go home already! Dr.Bragg talked about how they have a few other pts w similar shunt failure issues and symptoms and are constantly trying to fgure these pts out as well but so far didnt have a great answer how to help.
I sort of feel like we should stick w the original plan and try replacing the TPL valve and tapping the VP shunt to see if its still flowing or do we need to replace that valve to and see if replacing the valve w a programmable type might help since we've done this much already. On the other hand maybe we should dothe ICP monitor and get a good idea. I am tending towards leaning to trying the valves though first and will see what Dr.Bragg thinks in the am.
Stay tuned,
Erica
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