Last weeks surgery went ok, definitely has been hard since then though w very low pressure headaches. Dr.Bragg is out this past Fri to this coming Fri unexpectedly (=/) but her Partner is managing my care (we've gotten along reasonably well, this morning he was saying some things about my care/this next surgery (to place a higher pressure valve) and questioning why I needed a shunt ("b/c people with storage disorders don't need shunts" BUT I corrected this false notion and asked that he just follow what Dr.Bragg has done in the past as she knows my care and what works reasonably well. This questioning was after he even realized I had an underlying dx, as he said to me "what caused your Hydrocephalus in the 1st place?"
Fast fwd past a really, really difficult past wk spent mostly in the Neuro-ICU due to the External Drain (EVD/ICP monitor) and then after the EVD broke further down the line to this being removed Sat., my spending the day sleeping due to being sick and transfer over to the Trauma/TLC unit till a bed opens on regular Neuro-fl (D6-4).
It looks like I should get to transfer tonight so the past 2 days have been spent w very nice Nurses here including some of my former Nurses from D6-4 who now work on this unit.
Dr.Bragg's Partner stopped by this morning and their Resident just now, he is going to go w the next highest draining shunt in tomorrow's revision surgery (.5 Mininav valve) so hopefully this still allows enough drainage BUT stops the severe neck and mid-back pain I have been getting from overdraining.
I think my head doesn't necessarily mind the over draining to much but my neck and mid-spine feel like they are in agony when I am not icing it.
Of anything about this in-pt stay, infection, etc., I admittedly regret not having went back to the 2 shunts we had before. While I likely would have regretted not trying this current 0 pressure valve to see if I could tolerate it AND it was purely my decision to try it (I could have said no) I do think when we had 2 shunts it divided up the CSF draining and I just felt better body/muscle/draining wise. I am hoping this slightly higher pressure valve works but do kind of wish there was the former 2 shunts diving up the pressure flow and thus less spine irritation.
I also admittedly worry w this new valve we're putting in tomorrow will it not be enough drainage? Given I didn't have to significant of low pressure headaches and these where very intermittent I do think my body would have adapted. I do not think I could live with this to low of pressure in my spine and thus significant nerve irritation though. Hopefully if under drainage becomes an issue Dr.Bragg will help me try to sort it. I do realize why worry about something that isn't even yet an issue BUT I am a planner, a details person and it is a very real possibility.
I know this isn't a great update but will try to do better either after surgery or when I get home - believe it or not it has been 3.5wks in-pt now! =/ That is really crazy, it's definitely been eventful at times, frustrating at others.
Erica
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