Today was the last appt with Dr.Bragg, ironically apparently I WAS her last Patient she would see in clinic ever here in Madison.
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Myself, Dr.Bragg and her Nurse (Laura) where talking about 25 different things so while I felt sad thankfully the mood was light while in clinic with them. Lol, I only started tearing up on my drive home, thinking about some of the things we talked about, the MRI results (see below) and in general the uncertainty in 1. will the new guy really be good (get that my issues are less than straight fwd) 2. Worrying a little will he have some idea of what Dr.Bragg and I have all done/tried and that no matter who has managed my shunts (1st Nrsgn, Dr.Bragg, etc) it's never been a simple 'we do this and the shunts will last', bc they shunts just don't unfortunately.
Basically as I've said before I've worried more in the past 2.5-3 or so months than I have in probably 32.5yrs prior! =/ It still seems hard to believe Dr.Bragg really isn't going to ever be there again.
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I often think back to an email from Dr.Bragg the fall after I started seeing her (started seeing her May 5yrs ago around this time) she commented how reading past Neurosurgery records was very similar to the issues we where already dealing with (and would con't to deal with since then). I have been praying so hard the new doc will having a caring bone in him and be an atypical Neurosurgeon - in the sense he listens, isn't a jerk and wants to try and help/work with the rest of my Team. I think she will but I pray also Dr.Bragg really will stay involved.
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I think Dr.Bragg said something today, if I remember right she hadn't had a chance to write a summary of what we've done/tried or my history hydrocephalus wise and while there to I didn't think to ask her about this at the appt (I need time unfortunately to process things at appts, I am not one of those people whose quick on my feet to think of questions related to information I am given). - Anyways so I didn't think to ask her/can't remember if she said she'd have a chance to write this up before she leaves. I am praying she will though, would make me feel a lot better! She leaves Sat. so I'm not sure?
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Maybe I shouldn't given I know the new guy once he comes in Aug/Sept could likely call her in AZ but I AM worried some if I don't have a summary from her/run down on things we've done, little things like how she's best managed pain post top/anesthesia (was always nice she just paid attn. and knew what the Anesthesia people needed to do/use so I rarely worried. If they didn't want to do something she'd step in and make sure it got done) - I worry some starting this all over again even though the Anesthesia people at UW are familiar/have each others notes.
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Frankly I am worried to much probably about stuff I shouldn't but I worry this new guy won't be open to taking on my care (as in really taking it on, wanting to help vs some drs take you on but then do nothing).
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The other thing is though thankfully we didn't need to do/use them often when we did need to use EVDs (external drains, basically, essentially external shunts) the settings I needed to do well with them was very (VERY) low (-5) which is apparently very uncommon and the Nurses and sometimes the Residents in the N-ICU would freak out till Dr.Bragg stepped in and just changed the setting herself.
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She'd let me take off the crappy turban after the 1st night and just use the same turban material fashioned in to a headband of sorts to hold the drains in place and as well let me stand up and 'dump' CSF with the drain open as I drain best that way. Both things that freaked the Nurses out on N-ICU till Dr.Bragg would talk to them. Frankly whether a dr liked it or not I'd do these anyways but is always nicer when a dr realizes your not doing something willy-nilly/careless.
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I am praying she does do a summary and can includes little details like this (or if it really came down to it and we needed to do a drain at some pt. I'd advocate till I turned blue for both measures). It's a small thing I'm sure to most and odd to worry about but literally things like that make me want to crawl out of my skin (sensory I suppose) and the low drain setting is no different than my shunts both being set to drain at the very bottom. I am just that person who likes things planned ahead I guess, versus waiting till there's a problem then trying to get someone new to understand..
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Quick Brain MRI
We did do the quick brain MRI today, which maybe it's a good thing we did, not that anything came of it but results seem pretty telling to me. - my ventricles almost NEVER change in size and when the shunts are working ideally my ventricles are basically collapsed (which isn't ideal but I feel better). - Today's imaging showed per Dr.Bragg that ventricles where a more regular size (not enlarged but not very narrow) which Dr.Bragg was happy about (something to the affect 'then I won't worry your shunts are going to fail' - which made sense.
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Thinking about this and many other things on the way home though, could this normal ventricle size when my vents are normally slit like and I am having worsening symptoms including the irritated lumbar and mid spine region/nerve symptoms down my leg (like last yr. when that shunt wasn't working ideally for months either, we only found it incidentally) and on LP Shunt tap the region was so, so irritated during (but survivable - just hugely uncomfortable, I just had to keep moving my legs as much as possible and then as the day wore on the region got seemingly worse despite headaches being better). As well as morning nausea/some mornings throwing up be related to vent size being "normal" compared to my usual normal? I don't know but do wonder and wish I'd have thought of this at the time. Honestly I don't blame Dr.Bragg for thinking it's a good thing they where regular size, that's what you want ventricles to be but I do wonder now.
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Perhaps I am nuts and not as if it matters bc I don't have anyone to help me for months now anyways that I could try to convince to investigate the LP Shunt further.. (Dr.Bragg moves this wknd, today was her last clinic day. She did arrange I can work with the clinic NPs over the summer for intermittent symptomatic relief till the new Nrsgn comes) . Ahh shit, right? Fricken shunts, SUCKS that Dr.Bragg is gone! =/ Is all enough to make a person NUTS!
If second guessing where a job I'd rock at it!
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In any case, that's all, if you believe in prayer say a prayer the next few months pass quickly and by some miracle (seriously) someone could figure this shit out - who that might be now I don't know. =/
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Erica
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I see Cardiology and Heart Rhythm docs next week, Botox tomorrow - hopefully the botox can help muscles in spine a little. They seem OVERLY irritated the past couples wks (from shunts?)
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