Thursday, April 11, 2013

Chromosome tattoo, Neurosurgery Fup, etc..

Tattoo of Chromosome 4p16.3 - it's a little hard to tell but but the 16 is there. :) This is where the error occurs in MPS I pts.

I saw Dr.Bragg earlier today and not a real big deal as we are essentialy doing what we've been doing since this last surgery/revision, waiting and watching to see how the shunts do and will they atleast keep functioning partially so I keep feeling atleast partially improved, partial appetite, partial headache relief? She asked if the double vision was still an issue and honestly sometimes it is, sometimes it isnt? With the stronger lenses this has helped atleast be able to help see more clearly and surprisingly (atleast based off what the Eye doc had thought) it took next to no time to adjust to this new lense strength.. I can tell as he said it's still not strong enough but it is better which is better than nothing! (the story of my life!) Probably in 6 mo i'll get it increased again unless would have shunt troubles sooner. If I can make it and we can keep the shunts working I wont have to see Dr.Bragg till June. We can hope! :) Not that I mind seeing her but just the fact of the matter would be nice if shunts stayed working atleast as they are! She did say just to call if I started having any worse problems and we have a little wiggle room with the VP shunt valve adjustment (setting) yet. I completely forgot to ask her and have been meaning to since the last surgery (could email, not a big rush yet) on how will coumadin daily, which is a blood thinner affect our shunts and future revisions we do as we sort of figure when the heart valve replacements are done and I am healed from that we'll probably do something else w either the shunts or other things we've talked about though anything could of course change between now and then.

I am also putting on hold likely till after the valve replacements the 3rd carpal tunnel release and synovectomy/fat pad transfer surgeries on each hand but will get my Cardiologists opinion when I see him in 2 wks if he thinks  I should do it before the valve surgeries or wait given the coumadin will definetly make future surgeries more difficult.

Went to the 1st Pediatric Hydrocephalus Foundation Support Group mtng tonight - hosted by a family ive recently gotten to know a little and who is the Volunteer President of PHFSG. There where just 5 of us there tonight which made it nice actually and pretty informal.

Otherwise I leave for Boston Sat, we have a dinner at Genzyme Sat night, are doing a group thing sunday and lunch sunday + dinner w the family I am staying w + Jessi (my runner), then a breakfast on monday morning also at Genzyme and the race right after. :) Should be busy but fun!
Thanks for stopping by,


1 comment:

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