It has actually been a relatively short few days between the last post but I did see Dr.Bragg and that Appt to went fine and thankfully we have a tentative plan. I am so grateful she never gives up.
Dr.Bragg opted to tap the VP Shunt and although she was able to remove a small amount of CSF it took quite a long time, a very slow process whereas usually it is pretty spontaneous and takes a very short amount of time to receive however much fluid is wanted. She commented in the process a small amount of blood came out while she was trying to drain CSF, I don't think that is significant but she felt the shunt is likely occluding again and probably need a revision. I'll see her in a wk but she jokingly said "maybe we should put you on the 6month plan" (for shunt revisions). LOL, though she's not really wrong as it seems to be about true. For now the valve (reservoir where she taps to test/remove) CSF does refill so that is alteast good.
When I see her next week she'll re-tap the VP Shunt and we'll decide from there about shunt revision and if so details.
While in Dr.Bragg's office we where talking about if I had anything coming up which I don't other than the Boston trip which I was thinking at the time was not till the end of April. Instead when I went back and looked at April I am supposed to fly out to Boston the 17th so the wk after Easter I believe that is? In any case Dr.Bragg had asked me to msg her later Thurs to let her know if the shunt tap relieved the headache and secondary symptoms (it did, so glorious for that short time!) so I let her know about the dates.
Thankfully I do have the 2nd shunt so that gives us time as long as the VP Shunt is working atleast a small amount.
Dr.Bragg thought we could likely do periodic shunt taps to relieve the headache symptoms once she is back next Mon. so I am hoping she may be able to tap the VP Shunt and remove some CSF indeed periodically including maybe that Weds before I fly out Thurs morning? I don't know if it's the best idea I go to Boston but I realy, really try to just live life as normal as possible in-between the medical stuff? I know I could rest as needed and it is with families and friends that get this rare disease stuff in Boston and I am seeing a dr at BCH that Fri so although unlikely if anything did come up I would know medical personnel in Boston beyond just the Genzyme folks... I would imagine maybe we could do any revision then one of those next days after I got back? I fly out that Thurs, 17th and get back late the 20th.
I truly don't want to have to do another revision but at the same time I wish we where doing it tomorrow... Hopefully things just go ok over the next wks. I am looking fwd to it being Holy Week and Easter!
Although headache symptoms where back by Fri, today (Sat) the symptoms actually once I got past this morning weren't to bad and the cardiac (heart) symptoms where pretty good - I was out and about with my Mom, Sister and nephew (Zan is by me for the night and i'll take him back to his Mom's after Sunday School and Church tmrw) and although really tiring i've also learned to just sit out some things (wait in the van) and I try to do enough to have fun but also not wear myself out so completely it isn't even fun after a little while. I am hopeful this next few wks we can do the shunt taps and make things reasonably ok for a day or two at a time which although the symptoms come back they honestly atleast the leg and secondary symptoms (minus nausea) seem to take a few days to build back up to be so bad again. Almost like the nerves get a small break, a sigh of relief in a sense from pressure? I don't know just what it seems like.
Zan loves to take my phone and take pics of relay towers, power poles, power lines, cell towers, etc when we are out and about and so days like today sometimes it's just fun listening to him and watching to see what he deems "that's awesome"! =)
Tomorrow is the last Sunday School for a couple weeks, Palm Sunday (hard to believe it is a week away from Easter!) so after our lesson I have ceramic crosses for my kids to paint/decorate and a small gift for each of the kids. Zan typically enjoys doing these crafts with the kids so although it's a mess to clean up after it is usually fun =)
Will update again sometime soon,
Thanks for stopping by,
Erica
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