I was admittedly nervous for today's appt. but it wasn't bad. We sort of are at a wall as far as what to do/try so she (Dr.Bragg) is going to go back and talk to her Codman Rep again I guess and, see if there isn't a lower profile (in thinking about that after I am not entirely sure what that means?) Codman valve we could try. I am not sure if there isn't another brand of valve (non-Codman) that might work but am guessing not if she hasn't suggested it.. She just asked that I call her Nurse or Secretary next week and ask them to have her call me.
Dr.Bragg did opt to tap the VP Shunt which if I got it correct the flow wasn't great but there was spontaneous flow? She isn't concerned that it is obstructed is what it comes down to.. It's good that the shunt is "working" but admittedly (not that I want surgery, I DON'T!) I also know I'd sure feel better as I know with absolute certainty it is a shunt issue and has something to do w/ how well the shunt is or is not flowing. Sure when we do revisions we may not get 100% H/A improvement but what we do get atleast gives
me somewhat better energy, better appetite and I don't feel so tired so much of the time..
In a way I wish it would just have been clear cut or even better yet more than about anything I wish the shunts would just work optimally! I have zero doubt the shunt is atleast partially occluded as these symptoms mirror every other time I've had shunt obstruction/partial obstruction. Super frustrating!
As far as after tapping the (VP) Shunt we opted to reset shunt to the lowest setting (30) which she was hesitant to do but I think she also wanted to try offer some relief.
I can almost always tell a difference within a 30-60min period if it is going to offer any relief and whether it was b/c she took a bit of fluid off when she tapped the shunt (I am not sure if she did) or it is from actually lowering the VPS setting from '40' to '30' but there is a bit of a difference. The only problem with this is we usually run in to problems the lower we set this shunt as it seems to drain, collapse, pressure builds forcing it open more frequently. Who knows hopefully it would last for some time? I am sure hoping though never hold my breathe (that may sound negative but just being realistic).
I am supposed to go to a Meeting in Minneapolis tomorrow and then fly home Sat. night, the meeting is for Lysosomal Storage disorders which is usually informative (mostly geared to Professionals so isn't dumbed down). I admittedly do wish I felt tip top, even with the shunt adjustment I don't think i'll feel as great as I do when the shunt(s) are working fully. Anyways, I often think I try to go about my life as normally as possible
including the things I am involved in or have planned and sometimes just take extra breaks to nap or rest a bit. In any case I sometimes wonder, does going about these things hinder getting care (ie do Providers think if you can still do something like a mtng. you must not feel to bad (and it is true if I where really, really continually sick obviously I wouldn't go) so thus you don't get taken as seriously? I don't really know the answer to that but do wonder?
Because there's always something I forget to ask I forgot to ask if she had been able to talk to her Study Coord. about the potential to try to get IT approved at her hospital. She even asked if there was any other questions, I guess it just doesn't matter my mind gets a little overwhelmed remembering everything. I am just curious if this is a complete not going to happen idea or if there is any update..? I guess if I do talk to her next week I can ask her this then..
One of the other things Dr.Bragg brought up, which we've talked about before and I've written about here was the skull bone thinning (cranial vault expansion) and is something we circle back to frequently.. I think still we are at the same time trying to cross off or look in to any other options to help first.. Her thinking behind that is to create a bit more space for the CSF to circulate and thus help the shunts work better. I don't think it's even that rare of a surgery (actually in an MPS fb forum I just saw a little boy diagnosed w MPS I whom is having craniosynostosis surgery which I think may be similar as his Surgeon(s) are trying to avoid the need for a shunt and create space..
On an un-related not (I have lots of those) =) I've always written this blog as a way to share my experiences with MPS (and the related issues) with other families and secondarily as a way (in a way) to have a place to go back to to be able to look up a detail or past surgery info fairly easily. I never write with the intention that Med people might read it but apparently some do (that's almost a little intimidating) based off what the Cardiac Anesthesiologist had written in an email she wrote to me last year and what we talked about at todays Appt.
I don't really know who reads this or if all the time but even knowing a Provider(s) read it some is I guess in a way a good thing(?); a way for Med people to see we are human and not just our issues? Thankfully my Providers do seem good at the "whole picture" vs. 'Patients as just a diagnosis' but non-the-less I guess this is one place where I really share my truer feelings (good or bad?) on things.. I don't share a lot of my non-medical life on any forum but there are glimpses of it in some updates and in pictures here. Just is something I guess I've rarely thought about(who is going to read it) and maybe should more when I write appt/medical updates?
Anyways I am hoping whatever it was that helped a bit today really lasts as I want to go to the Mini-WORLD Lysosomal Mtng in MSP Tmrw/Sat! The Foundation I work for is sending me with the 1 request I take notes on anything that might be of interest to MPS I/research.
I am hoping to feel reasonably ok????
Erica
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