This morning like most mornings started off rather blah and bland (my words for not feeling great) and transpired to a better afternoon. Although I hadn't thought of it when I made the Appt I had an appt with Dr.Bragg today so made my way there early this afternoon. Thankfully that timing atleast works out so I am feeling more human, I don't feel like a grouch and having a conversation doesnt feel like it is picking needles out of a haystack (my description for how difficult it is sometimes to come up with the thoughts to make conversation with someone when not feeling good)..
Because she's Dr.Bragg and well bc that's who she is she realized it was my bday and as she opened the exam door she and her 1 NP started signing 'Happy Birthday' (totally embarassing BUT really sweet of them!) =) She had this sweet picture they had printed out (she clearly knows me to well what with the cat and all) and which she and much of her Team had signed. Additionaly bc she's silly but in a good way she had this skull (LOVE IT) and these kitty ribbons - I might see if I can hot glue one of those ribbons to one of my headbands. It's good to be a little bit like a kid sometimes! I happen to know 1 niece of mine who will love these to. =)
So anyways the reason I was seeing her was really due to not feeling well, clearly even if I like Dr.Bragg I wouldnt otherwise chose to just want to see her in clinic! It's a nice enough place BUT i'm not crazy!! Alas b/c the leg symptoms have continued to progress despite my 'imperfectly perfect' shunts (they work but never well enough and over time seem to work less and less well due to the ever repeating drain/collapse/pressure builds/drain/collapse/pressure builds over and over process) she opted to tap the VP Shunt and if nothing else said she would take some fluid off to see if this gave relief. The tap went ok, initially she had made some comment it felt a little different than a few wks ago but I didn't ask what she meant by that. I know I ocassionaly will depress the reservoir to try and get CSF seeming to flow which for whatever reason helps then shortly after helps the L leg symptoms and the reservoir doesnt always seem very 'squishy' these days (doesnt seem like it refills very quickly all the time maybe?) but I am not entirely sure if thats normal and something I completely didnt think to ask her. Ironically this morning in my stupor I was trying to think of what it was I had wanted to ask her about and couldnt and now I realize thinking about it this clearly is what it was (why would depressing the reservoir to seeming get CSF moving seemingly help the leg symptoms?) Aother question for another day I guess.
I think she said she took off between 2 and 3cc of CSF (I am not enirely sure how significant an amount that is) but asked me to let her know if it helped both the headaches and the leg symptoms. I could tell a difference (which is often the case) by the time I got out to my car; it literally is like a 'head clearing', as if a bowling ball like pressure is being removed from your head AND my leg didnt fall asleep/hurt AT ALL during the drive home!! I know it's only temporary BUT this still is an Awesome, Awesome bday gift that I am REALLY grateful for!! God is soo good and my Neurosurgeon is wonderful for trying little things to even help temporarily. She asked that I update her on if the shunt tap/removing CSF helped which is easy enough, I am glad she cares =)
I am admittedly curious to see if this removing a bit of fluid will help breathing tonight and sleep amongst the other things. My Cardiologist is apparently concerned about the new/recurring symptoms but told his NP he felt I would know if I needed to come in (likely med adjustment then) or if it was multi-factorial which is what I also suspect ie shunts affect cardiac stuff, cardiac stuff affects shunts, etc. I have no doubt when the shunts are being a little/lot less than optimal heart rate is much more forceful and fast.
I know there is no easy answer for her but I also know many drs wouldnt try anything at all so I am always grateful when she is willing to try something... She talked about she'd seen her Shunt Rep the other day and they where talking about a newer Strata-like valve but it has 8 settings vs Strata's only have I think if I am remembering from my Strata days only 3 or 4 settings.
Dr.Bragg said she didnt feel this would be a great choice for me as it has so few settings which at the time talking about it I didnt think to much but I am curious now are those settings higher draining or are some of the settings able to drain low as does my current Codman valves? Whenever I talk to her next I want to ask her about this as well as about a valve we talked about a year or so ago that albeit notoriouly difficult to reprogram apparently has more setting options...
Their re-programmer for the valves I have in both shunts is non-functioning at the moment so I am hoping at the very least once that is fixed we can potentially adjust the settings on either of my valves to try and help..
On a slightly unrelated note, for sometime now i've been trying to restrict how much fluid I drink, some days doing better than others but defintiely noticing a difference the day after I have drank more or less. This is cardiac in nature but slightly aggravating as you never realize just how much you miss or want something till your trying to not drink alot of it! INR, per Cardiology this week was just barely in-range at 2.1 AFTER 2wks of near double the usual Coumadin (blood thinner med) dose I take! I about fell over when Nancy,the NP called and told me that. Honestly i'm glad it's in-range but jeesh at that dose I figured we'd be safely higher so I could reduce the amount I take every day again!
On a reallllyyyy un-related note Dr.Bragg and I where talking about her daughter and my nephew and some other things and got on to the subject of where my Parents live. Tursn out she (Bragg) is giving a talk in B.D towards the end of the month! Good that this town is FINALLY branching out and getting over their seeming insulated self and trying to better educate their Providers on various Neurologic and other issues that occur in pts! Althugh I saw a Pediatric Cardiologist in Madison growing up I often wonder had I seen someoone more specialized earlier on for some of the other issues sooner (as a Teen I started being referred to other Specialists) would an MPS dx have come sooner? I wonder this bc I look at others in the MPS I community and many don't look that different than I do nor have most had anywhere near as many issues as I have had.
Insurance Case Manager
My Insurance Nurse Case Manager called the other day, just to check in and was asking about the shunts, headaches and symptoms and how things in general are doing. I mentioned how i'd despite really not wanting to do it made an Appt to see Dr.Bragg for later this wk (today) and how I know I 'look' fine but I sure don't feel fine alot of the day and that I wished we'd find a better answer with the shunts ie a better valve or setting or perhaps the TPL Shunt causing irritation to my spine nerves just makes the overall headaches that much more aggravating to me. I don't know but I said while I in no way blame Dr.Bragg and AM grateful to her and I am certain it must be hard to her b/c I rarely present as 'looking bad' even if I don't feel great (other than times such as in Jan when the 1 shunt was completely not working).
She (Nurse C.M) said something along the line how well I seem to do keeping a positive attitude and not getting mad despite on-going, intermittent issues and that most pts she knows would not have the grace/patience. All I could think is I hope I really do come across as she seems to think? I don't think I am impatient by any means but I sure hate feeling like a nuisance (not that Dr.Bragg really makes me feel this way). ... It IS just HARD having to continually ask someone for help!
Perhaps that conversation and today's Appt are God's way of continually reminding me I should just trust more and doubt less? As i've always said, I really do trust Dr.Bragg and most of my Providers but I have a really hard time sometimes not having answers and not doubting they won't give up!
My wish to myself is this next year of being 32 is blessed and good and I grow in whatever way God deems fit, that my health may be well or that we may if it is God's will figure out these headaches at some pt and the cardiac issues perhaps stay stable.
Thanks so much for stopping by,
Erica
'Happy Birthday' (from Dr.Bragg and her Team)
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