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

Revision Postponed, tentative plan...

Surgery was post-poned till Friday as Dr.Bragg had a case come in Weds night she didnt feel comfortable waiting till Friday to do so we essentially swapped. As far as what she will likely do she mentioned taking out the PS Medical valve in my TPL shunt and putting in a Medtronic Strata programmable valve again so we can re-program the valve and play around w the pressures/resistance as before we had to take everything out. I honestly dont remember if I asked her if we would leave the catheter tip to cont to drain in to the pleural cavity or not but she didnt say otherwise that I can remember from our talking this morning.

She also plans to tap the VP shunt in surgery and if this isnt working said she would swap out the mini-nav (flow control) device (similar to a valve) for a Codman programmable valve for more options in drainage.    I am unsure if she would/will leave the second (Miethke) 'shunt assistant' valve in or no.

If nothing else amazingly in this all my GI system has been pretty calm and no constipation which is nice and would be very nice if it cont's! For whatever reason my body just does not seem to like to absorb the CSF well or adapt to that drainage (or something) as ive never understood the connection w constipation (TMI, I know) other than pressure puts un-do well pressure on your brain signals maybe? Doesnt explain why it would be 'calm' now then though..

I, of course missed the 'Pain and Opioids' meeting Tues night in Milw but my Pain Mngmt dr texted me that evening later on to let me know it went well and they missed my voice to balance the 'conversation' . Today she sent me a couple more messages and said they are looking at hosting more of these as the turn-out was over 200 last night (wow!) + successful and alot of interest.  On the panel I would have sat on where an Addictionologist (specializing in people w addictions to drugs) as well as a few others including reporterdly another provider who was very fair and balanced in supporting opioid use in a well thought out combination approach.  I do hope they plan more of these meetings as I truly want to be involved and bring a legitimate voice to the table that "Yes, these medications actually Do help patients and most of us are following our providers instructions, living a "normal" life (whatever that normal IS!) and not selling our medications, diverting our meds or abusing our meds!

Hoping we are coming to the close end with this series of surgeries, who knows but maybe!?
Thanks for stopping by,
Erica