Thursday, March 7, 2013

Appt with Neurosurgeon, VP shunt (valve) revision

Add-in note as I was typing this Dr.Bragg's Secretary (Anna) called and the CT scan is scheduled for March 13th while I am already in their area for a Neuro-Opthalmology appt and then surgery itself is scheduled for March 19th, a Tues.

Today's appt went better in a way that I could have hoped; I thought at the very least I might have to convince Dr.Bragg why a codman valve w it's many more options for settings (they have 3 valves w 8, 18 and 20 settings a piece) might help us. Instead she fully seemed to agree saying she had been thinking of me alot over the past few days and how while it's not a bad thing I am in her thoughts often it is bc she tries to figure out a better plan. We both agree this Codman in place of the "non-valve" 'miethke shunt assistant' and 'mini-nav' "non-valve" wont be a full symptom fix nor a likely long term fix but we think having more options to turn the 2 shunts to a low-medium drainage setting can atleast help me feel somewhat better than I do now by allowing more CSF to drain while keeping the ventricles open better. This should also hopefully help us be able to stop the IV zofran (and thus not have my Port with the subsequent infection risk accessed all the time) and buy us time till either we explore the cranial expansion which would entail shaving some of the skull bone to create room or till we do the cardiac valve replacements and then look further at the cranial expansion. The 2 current "non-valves" sit at the proximal or top portion of the VP shunt and the other sits at my collar-bone level along the shunt line)  plus we will remove those and replace w the Codman programmable although I am unsure which valve specifically (certas, medos or hakim). She did say the downside of the Codman valves is they have to be reset by a programmer (like my TPL strata valve) then an Xray is done + then she has to re-check the setting. Instead of setting it, doing an xray and then my coming back to see her she would she said just go with me to Radiology and set the valve to its correct or new setting (whichever case ie after an MRI or if we where adjusting the drainage amount) right there. 

Her nurse or secretary will call me to schedule this surgery and she wanted  to try to do this in the next couple weeks; she is out of town the first week of April (which I think follows Easter) so I assume was wanting to try to do this before then. I am ok with that and ideally would be good if we could do it a week from Tues. Not that I even want to wait that long but bc then id not have to reschedule other appts and things I have next week. I do have the Hand surgery on the 20th of March but told Dr.Bragg I will push that back and when I jokingly said to my PCP yesterday after the Hand pre-op physical "lets see if 3rd times the charm" for this Hand surgery, she laughed and said well the shunt stuff takes precedent.  I'll get that hand surgery done at some point! Even Dr.Bragg joked and said something like your Hand surgeon is going to hate me for your having to reschedule his surgery so often! :) Still I am incredibly grateful Dr.Bragg thinks about my case so much and was also thinking something like a programmable valve for the VP shunt again to atleast help improve my symptoms for now! How many drs would be willing to do surgery knowing it likely isnt going to be a full-on fix? Not that the symptoms of the Hydro arent serious as they are but still we all know there are some drs who just wouldnt consider doing this.

She is doing a CT scan before the revision and using this to guide the VP proximal (tip) of the catheter to a better trajectory and location as she said she doesnt feel it is in an optimal location now. The CT acts as sort of a road map (or GPS is how ive described it before) and this + doing the surgery via scope gives a finer view point or potentially more accurate placement.

Will try to update soon,


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