'GPS' guidance system but her partner thinks it is ok so we watch
I am so tired from not sleeping overnight I di...dnt think to even ask many questions other than this catheter placemennt she mentioned w/ the revision. Sad that it already seems like eons ago and was just yesterday. ... We wait and watch for next couple days.. CT scan this a.m showed ventricle had collapsed
whereas it was enlarged before surgery (due to failure) so a sort of no win scenario but it may correct itself when pressure builds up from inside outward causing ventricle walls to re-open but hopefully not occlude. (Thinkn of a straw in jello I guess vs a straw in water one is much easier to suck through/drain through).
I know many of you wonder why "we cant get it right" but its not a simple answer - MPS causes the brain to be less compliant, the
ventricles to be stiffer and less able to respond to pressure changes (thus partial cause of occlusions) and shunts in general in a non-MPS, more typical Hydrocephalus pt have a 60% failure rate regardless of surgeon in the first few months which tells you something... I hate the surgeries to but admittedly the second guessing is kind of hard bc I know its so much more complicated than I could ever all share here and especially for non-MPS people it's just not straight fwd. And even most MPS kids (I dont actually know to many adults w MPS w shunts likely bc there are so few of us) dont seem to have anywhere near the issues ive had or seeming complicating picture. I truly appreciate advice and support but is hard when people suggest the Neurosurgeons are doing something wrong as they really arent and are working w their medical engineers and Neurologists ("mathmeticians") to figure these issues out and truly thinking outside the box as a team to find solution one step at a time.
MPS is a complicated disorder and Hydro/shunts are a far from perfect science so taken together it can be very discouraging seeming but you have to pur your faith in the one person who knows your outcome "God) and your trust in the specialists you entrust your care to be able to go fwd as simply as one step at a time some days and one day at a time many weeks.
I have to re-post sometihng my sister-in-law wrote on my fb wall - I am lucky to have such great sisters:
Please keep my dear sister-in-law Erica Thiel in your thoughts and prayers today. Battling a rare disease, she just had a 5th surgery in the last month. She is such a beautiful person inside and out. Always thinking about everyone but herself, Today is a day to think about her