I think I wrote about this in my last post but she always asks about the heart stuff, honestly I think maybe it makes her a little nervous (which there's nothing wrong with that if it is the case), better a cautious, thoughtful Provider then 1 who thinks only of their particular treating issue OR just plain doesn't care about the whole picture!
We talked about the current shunt valve and the irritation this is causing + how the Codman Hakim valve even though it is imperfect as far as draining wise it is the best I feel like as far as shunt valves we've tried and consistent drainage vs this current valve seems very inconsistent and a lot of spine/nerve irritation.. That may not make a lot of sense but while it doesn't drain enough CSF (spinal fluid) when we've had that valve in the various shunts it seems to drain pretty constantly so atleast there isn't the nerve irritation and isn't intermittent issue..
I am unsure how exactly to describe what it is about the Codman Hakim valve that the other 3 or 4 or so valves we've tried over the past 4 yrs including the 1 I currently have in place on my shunt haven't done well.
She had looked in to see if there was a Codman valve (this is the brand, not a type of shunt, for instance Nike is a brand, 'Air Jordan' is the product.. if that makes sense?) that drains lower than the current valve I have but was unable to fine one. Not surprising I guess, and we did talk about would that have caused worse irritation to spine nerves, but is hard to know.
We've decided initially to take out this current valve given it is causing so much issue and to re-replace a Codman Hakim valve in the LP Shunt.
This will occur Sept 22nd, in the interim b/c I have a few things going on and wanted to try and postpone the surgery(Sun School starts a wk from Sun, Conf. in Utah 2wks from this past Weds) Dr.Bragg is going to do shunt taps to take off CSF next Thurs and the following Tues, before I fly out to Utah on Weds. I am beyond grateful to her she will do these taps! While the relief is short term headache wise the other symptoms seem to last longer (it is weird), a few days sometimes and it is awesome! It makes dealing with the headaches more tolerable.
It never ceases to amaze me but Dr.Bragg had told me when we where walking out of the Appt together if I wanted I could go ahead and call her Secretary that afternoon to get the surgery scheduled (her and I had settled on a general timeframe after looking at our respective calendars) as well as schedule the appts to have her tap the LP Shunt and take off fluid in the interim. She said something to me about "if you don't mind the drive i'll be happy to take off fluid, I know it gives you relief for a short while' (my wording) which albeit sure the drive is a bit of a pain BUT to feel better it is worth it!
I was able to talk to her Secretary that same afternoon of the Appt and Anna without even having seen the inbox message Dr.Bragg was going to send her yet scheduled the 2 appts (next Thurs and the following Tues) and scheduled the surgery (2 wks from this coming Tues) which amazes me but this is what makes Dr.Bragg's Team kind of amazing, they all communicate really well, Anna trusts if I am giving her info then it is what Dr.Bragg has ok'd to me and same goes when I am talking to Dr.Bragg's Nurse for that matter.
I definitely was relieved to have that all scheduled and sorted before the long wknd which also meant in turn I could schedule the pre-op and sort that with other things I have going on next wk. Given I have the Conf. the following I needed to get the pre-op next wk and it did work out and with my own Primary dr. thankfully which makes that appt along easier and more smooth!
I did ask her about if she was against putting in the 2nd shunt after she and I talked about the LP Shunt and changing the LP Shunt valve 1st. She isn't entirely opposed to replacing the 2nd shunt, albeit if we do that she does not want to do it at the same time as the LP Shunt valve due to infection risk and I think she wanted to give the new heart med a bit more time to have it's hopeful affect on the heart before putting my body through a tougher surgery like a VP Shunt replacement/insertion surgery.
She commented how she didn't really want to put me through 2 surgeries but overall she would feel that was safer, which I can understand. It would suck but to feel better I'd probably jump through burning hoops, so...
It seems like as I mentioned above she is willing to put the 2nd shunt back, she made a comment along the lines about giving this shunt valve change once it is done some time, maybe do the 2nd shunt later in fall? I am not entirely sure on that. Atleast she seems fairly open to the idea? She asked me what my thoughts where re where a 2nd shunt would drain ie what where my thoughts on both shunts draining to the peritoneal cavity (abdomen kind of) giving we know heart surgery is going to happen at some pt...
Basically regarding heart surgery related to the above and any shunt stuff and just what my Heart Team's thinking is, how they kind of manage decisions regarding any of it, it is a 3-6mo at a time call, I see Dr.Earing every 3mo and Echo's are done every 6mo where we re-visit a 3rd Heart surgery and 'can we postpone it some more' each time..
I see my Heart Rhythm dr in-between those visits as well and he talks with Dr.E so all are on the same page.
Given the unfortunate knowledge of heart surgery in my future and given pleural spaces (area around the lungs) are needed during heart surgeries we know it wouldn't be ideal to put a 2nd shunt if we put it back in to drain to a pleural location. That said we agreed, should we put the 2nd shunt back, both would drain to same location in the peritoneal location.
Perhaps at some pt. further down the road, after a heart surgery where over with we could move 1 of the shunt distal ends to pleural space.. While it isn't ideal having both drain to same location at this point I'd take that and probable, potential to feel some better pressure wise!
And if we're lucky this new heart med will work for a good long while and we wont have to face heart surgery for awhile..! I am hoping, I think (I know) everyone on my Team is hoping for this!
On an un-related, related note I saw my Physical Therapist today, he was impressed w how little edema (fluid?) there was today in my face and joints - joints especially and felt like he was really able to make a impact today on getting my shoulders to move better (a significant source of discomfort for me). He has also commented how in general areas like my legs, face and upper body just seem much less "puffy" (I've lost around 4pds but I don't think it is this weight loss (unintentional) that affects the less puffiness he notices. Even the heart meds (that make me pee like a sive) don't seem to touch the puffiness he has commented on from time to time.
His counterstrain/myofascial work is AMAZING though! He is like a god send when it comes to helping the muscle/nerve pain and in turn I am able to take less pain meds. We've never found a good way to effectively help the headaches but that I truly think i more b/c it is from the storage issue/MPS.
I DO think the shunt being back in LP location even if it doesn't drain enough and the new heart med even if the heart med is not yet having a significant impact on heart rate/breathing is seem to be impacting this overall puffiness. I asked Tom about it and he thought both of these (shunt and new heart med) could definitely be why he's seeing this change. Whatever the cause, if it's helping him help me i'll take the improvement!
In any case, thanks for stopping by,
Stay tuned,
Erica
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