Hand Surgery, Botox injections, VBS.

The Hand Surgery went  well Weds and not to painful. I am basically one-handed other than a little bit of hand use but was still able to drive myself to Madison to the botox and labs today. Thankfully the complete arm-regional block was pretty well worn off by this morning as that was interesting and proved difficult in trying to get dressed last night! At the hospital today a random doc in the Elevator asked if I tripped and hurt my arm and then  I also stopped to grab a bite and a lady asked what I did or was it carpal tunnel and did I do a lot of typing.. (lol) I explained a little of the storage issue and this being the 3rd surgery so I knew what to expect and personally I think it hasn't been as painful because to some extent there is a lot of permanent damage to the actual nerve.  I rarely go in to a lot of detail to people as most are only semi-interested and personally although I am happy to educate new people on a new (to them) disorder as chances are they've never heard of it but I also don't want to bore people and really I don't think everyone I don't know needs to know everything about me!  She asked was the surgery painful as  she had heard  I guess that this is one of the more painful surgeries. I kind of laughed saying this was the 3rd time and a piece of cake compared to some surgeries I've had, which is definitely true this time. Funny the things people in random public places will ask (about what the Port is, do I know I have some line under my skin or what is that tubing under my skin (shunt), etc? I sometime want to ask; "No I didn't know I had a line,  what line, OOh my gosh are you kidding I have no idea what it is!?!? LOL!
 We used a regional nerve block for the surgery which worked fine and I was able to be semi-propped up as they prepped for surgery and during by leaning back on pillows in the OR (the Anesthesiologist was great about that as well as no issues w giving the Solu-cortef! (Hallelujah!) While they used the standard Oxygen and did an EKG prior to going in to the OR due to the heart issues which where also fairly standard and normal. The regional block was placed while still in the "holding" area and done with ultrasound so also was not painful.  As far as the bandage that is about 3/4 length up the arm/to elbow and first OT appt is this coming Weds. I guess the bandage will be switched on Weds but stays on until the following week (2 wks from surgery) when the stitches come out and then a splint has to be worn for another 2 weeks after that. This apparently means I  will go in to the shunt surgery/revision with the surgery (R) hand still splinted; I had misread a mychart message about this a few wks ago and not that it's a huge deal just different than what I thought till now. I assume the length of this splinting is because of the hypothenar fat pad graft, done after the carpal tunnel re-release and synovectomy (to help protect the newly re-exposed nerve as so much damage has been done from such on-going severe CT recurrences multiple (3) times now and so many hand surgeries, including the Opponensplasty (ie the thenar tendon transfer 2+ yrs ago). I imagine this must take more time to heal than just plain "simpler" carpal tunnel surgery. Not entirely sure, since I can still drive I can deal with it. Showering is a DEFINITE pain though!

The botox today which I was also trying to get done before the 2 up-coming surgeries was done by a new dr doing one time injections for my Neurologist who has been out for a few months; he commented how un-affected I looked once he figured out I had MPS. Once he started the botox w EMG guidance in the nerves he was almost speechless as he said and was plainly obvious the muscles are extraordinarily over-active (spasticity) and  especially he said for how mild I look as far as how affected. He was quizzing me about my form being particularly rare (1:500,000) so I hope he now realized not everyone who has a lot of the affects has the more standards "looks"! The nerves due to muscle spasticity literally sounded just like a very loud, stormy thunderstorm (the crackle, thunder-ish loud crescendo's) in the 30 some injections he did across neck, thoracic spine (down to bra line) and across shoulder's. I will say he wasn't to bad at the injections, no numbing spray and only one of the 30-some injections made me suck in my breath and jump! I think I wrote in the last post that I may be switching in-time for the next set of Botox (every 3 mo) to a PMR dr my Neurosurgeon and her nurse recommended. Ive talked to the office and just couldn't make my schedule work with that drs in the next 1 1/2 months so they will keep me n their computer system and I will call and schedule a new-patient appt after the Heart surgery, hopefully in August if all goes well with the heart surgery. My Neurosurgeon and her Nurse really, highly recommended this PMR dr.

We start VBS next week; someone else is teaching Monday for me and then I have Tues-Fri with class running from 9-11:30,  2 1/2 hours though Friday we have a picnic after for the kids and really the other days it amounts to only about 30-mins that us teachers have for our actual lessons. The other 2hrs area short  opening service each day, short recess, craft/snack time and then music followed by closing back up in church. We alternate between the school and church throughout the morning and I will have an assistant + about 11 kids in addition to whoever isn't registered and comes the day of (mon.) and signs up.  It looks like I will only have 2 of my SS kids and so far about 8-9 other kids based off the roster from our planning meeting tonight. I think it should be ok, and I am looking fwd to seeing "our kids" again both those in my class (going in to 3rd-4th grade ) and our other kids who are now in the 5th-6th grade class for VBS and then for SS this Fall.

Earlier this week I had 2 upper, back teeth pulled which other than having to end up icing the one side that night (they had to cut it out and place stitches) the healing has been very fine. Otherwise I have a lot =./ of cavities to get filled, most small with one bigger. YUCK! That all has to be done before 7/24, the surgery date and in-between the shunt surgery, in-patient stay plus a lot of other stuff. Yippee.

Unless something changes I am planning to head to a friends who lives outside of Chicago next weekend and go to a MPS meeting at the Zoo plus then drive back either Sat night or early Sunday morning. Our kids sing in the late (10:30) service for VBS that sunday.
Will update again when there's anything new, all including labs is set for Dr.Bragg's shunt surgery and I meet w the Cardiac Surgeon and my Cardiologist the day before (20th) at CHW.
Thanks for stopping by,

Erica