Well i'll come back to it and update how the Hand Surgery went last Thurs. but first some other unexpected shunt issues began Monday might.
I'd been having slight increase in Headaches over I'd say the last week or maybe more BUT nothing that was so bad I thought 1 of the shunts would quit working. I still was somewhat optimistic this revision done in Nov. was the best I'd felt in a long while which believe me was nothing short of exciting!
Sunday I'd taught Sunday School, visited my parents a bit and went to a Church committee mtng Sunday evening followed by getting dinner w 3 of my Church friends, all feeling pretty fine minus the mild inconsistent but consistent headache that wasn't really new.
Monday was ERT (infusion) day which ran a lot longer than normal due to our continuing to try to figure out the best ramp up and final rates to run the drug over 5hrs. In total infusion ended up lasting 6hrs but I was still able to get home about 7:30(after leaving my Apt about 9-9:30. I think I put my PJ's on and sat on the couch probably watching TV or zoning out or something due to being tired! Pretty much out of nowhere around 8:30-9 I started getting a really bad headache that is one that just nothing I did would ease it. I think I gave up and laid down around 10 before getting u take Zofran and then a bit later a 1/2 a dose of Ativan followed by the other 1/2 not to long later.
I managed to sleep on and off a little but by the wee hours of the morning I was throwing up very frequently. I think I must have done that for about 4-5hrs on and off trying to stay warm (due to chills) and keep ibuprofen and adivan down (with pretty much no success but I kept praying I'd feel better by morning. Needles by around 7:30-8 I called my Dad and asked if he'd come pick me up and take me to the local ER in BD. I still wanted it just to be the flu or something even though I knew it was something shunt related in all reality.
At the ER between throwing up in their bathroom next to the registration desk the Nurse (former HS classmate ironically) I was taken back to the ER within a few mins, an IV started through the Port (as miserable as I felt I could have hugged the Nurse for being so open and willing to use the Port thus our not having to fight with terrible veins. Once that was placed they did fluids and more Ativan + I think a pain med and Zofran. Not to long after the doc peeked in, asked who my Neurosurgeon was so she could do whatever Dr.Bragg wanted or find out if she (Dr.Bragg) just wanted me to transferred to UW. In total although the morning is a complete blur I don't think I was at BDCH's ER for more than an hour or so. The Ambulance came, was transferred to UW and I have to admit I remember pretty much nothing of the rest of the day.
Once they tapped the VP Shunt we knew it wasn't working so Dr.Bragg went back and forth between doing emergency surgery that night (but having to manage to high of an INR) or waiting till Weds for surgery and giving multiple (3 I think) bags of Plasma to bring the blood thinner (INR) level to a safer range. Surgery I couldn't even quite tell you what time it was at but Dr.Bragg did say with their using the Lightascope (sp) went the best she's seen it go in a long while. For surgery if I remember what she told me even remotely close they exchanged out the old valve but used the same Codman (I am not sure and haven't thought to ask her of she opted to stick w this valve bc we've had reasonably good luck w it (clearly not the best but atleast I feel semi-human with it most of the time) or bc having been a unplanned surgery did she not have the newer valve she'd talked at the Appt about on hand.
She did tell my Parents after surgery they ordered and will keep on hand now an extra set of each of my shunts (VP Codman Hakim and LP Codman Hakim which they use in the Thoracic spine) to prevent the delay they had during this surgery.
She did say they had a problem w a tiny part of the shunt (a connector piece maybe, cant remember for sure) so they had to call their Codman Rep who was 1.5hrs away and have her bring a whole new shunt Codman Hakim shunt and in the mean time they just kept me asleep on the table + Dr.Bragg and her colleagues just kept watch while waiting in the OR room.
I think once they had the new shunt system they took off the piece they needed and where able to finish the shunt part changes. She didn't really say why she thought this occlusion would have happened so fast and so (for me) severely but commented that was the worst she'd seen me since 2 Christmases ago when I'd gotten released the afternoon prior to Christmas Eve day and then was brought back that same night also by ambulance. It definitely makes me wonder why some occlusions are so much worse than others, other than perhaps when I am able to go longer w headache and related symptoms the VP Shunt must be workin minimally whereas this time it was completely failed? Not sure but was TOTALLY unexpected! I was actually somewhat optimistic we'd make it longer, maybe even a few more months or something the way I'd been feeling the closest to normal I'd felt in a long time!
Non-the-less I am more than grateful my Dad could come pick me up Tues morning, that the local ER calls and works w Dr.Bragg to come up with a transfer plan without really a second guess or my having to ask them to.
I don't feel as good as I had after Nov's revision but am hoping maybe in a day or two I will. I am really grateful to Dr.Bragg and her Team, to my Family and friends for the huge outpouring of support and concern and that this surgery now to is done and over with!
As far as the Hand surgery that minus some mild disagreeing with the Anesthesiologist
over whether the stress dose steroid needing to be given or not I think surgery went well. He didn't come talk to me after surgery so any info I have is whatever he told my Dad.(that always gets on my nerves when Surgeon don't bother to talk to the Patient and explain their thoughts or what they did).
He told Dad I guess the carpal tunnel was definitely severe again (the last release, done for a 2nd time was performed by Dr.D in Milw. about 5yrs ago). That was a pretty extensive release but this time was done even more so and along w the tendon thinning (I think that's what it is) Dr.Bliss did what is called a 'fat pad graft' where they take hypothenar fat (I guess) and use this to protect the newly released carpal tunnel area due to the other surgeries.
I was supposed to have the 1st f/up to get the splint changed on Tues but due to the ER and getting transferred to UW that appt was rescheduled to Thurs (today) but I again had to reschedule. Now i'll follow up next wk., they said if I got out to let them know and they'd fit me in early in the wk but given it's ONLY to change to a new splint and I go back to get stitches out (the splint stays on for a few more wks) on next Fri I may just see both the OT and the Hand Surgery P.A. on the same appt. We'll see.
Right now I am just hoping the headaches improve some more and I get back to feeling closer to prior to this VP Shunt fail/occlusion!
Will update again soon,
Erica
P.S on a more positive note the Foundation I work part time for asked if I'd like to go to the WORLD Lysosomal mtng mid-Febr again (this yr in Orlando) so my plane ticket, hotel, etc. are all booked and planned! It is a good mtng with a lot of info on not only MPS but the related disorders and most if the drsa patient might want to talk to all under rook!
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