Tuesday I saw the new Hand surgeon and while at first he didnt actually realize I had an underlying diagnosis he told me he has had a few other patients who've had a 3rd carpal tunnel release surgery and so while we both know it isnt going to restore lost muscle and tissue it can help with symptoms; that is good enough for me. I asked him if it bothered him that it would likely re-occur again and he just seemed to look at it like we'll deal with it as it comes which is what I also think, no sense worrying about that now.
He recommended a 3rd release and a tenosynovectomy (cleaning of the tendons in the hand, my fingers are not affected) and additionally he would like to do a fat pad graft in which he will take fat/tissue from the side of my hand (in this case R hand first) and use whatever he can get (as he put it there isnt alot of fat to begin with there as I have so much muscle loss and thin to begin with) and then use this to "pad" the nerve which has now been cleaned and released 2x's already and a 3rd time will leave very little protection/cushion especially given my amount of previous damage (prior to 1st CT releases which where pre- MPS dx. That is then splinted for 5-6 days and then bandages changed and I think re-wrapped plus stitches removed at 10-14 days + follow up in 2-3 weeks after that. I will wait till that is completely healed to do the other hand. Other than the tendon transfer in my ring finger to thumb (a pulley like system now that goes from wrist to thumb now) which was 2 yrs ago this surgery will be bigger than a typical CT release but he said still only take about an hour for the actual surgery.
I see Dr.Bragg tomorrow and hoping either the MRI gives us a clearer answer or she has thought over the things I mentioned here last week as these symptoms seem to be happening more and more frequently and progressively worse/longer lasting. It is almost like the pressure headaches and then to top it off the c-spine/upper neck into skull headache. =/ YUCK!
Sat I am volunteering at a Walk for Hydrocephalus at the Zoo in Milw in registration and the kids area and then going to my brother and sister in laws who are moving that day to an place about 30mins from the Milw Zoo. Should be fun if it doesnt rain and really is in the 60's as predicted - I sincerely hope it is a good day!!!! (especially symptom wise it is sooo un-predictable.)
Below was written monday monday after getitng home froma long day in Milw and at ERT (infusion).
Thanks for stopping by,
Erica
Monday Oct. 9, 2012
This morning I was at ERT and up front getting paperwork from the secretary after coming back from across the parking lot/walkway of our clinic building (Pharmacy Children's Hospital, infusion is done in Genetics clinic not an infusion center) and after stopping back up-front before heading in back my former GC (genetic counselor) happened to also be standing at the desk talking to several people and she commented to me: "You look really great, Erica!" - this was the first morning ive felt semi-energetic (bouncing off the walls a bit actually) in probably a week (feeling particularly mind-numbingly bad on/off this past week) and so it was kind of nice actually to have someone think I looked really good when in fact I still hadnt combed my hair this morning (the hidden blessing I guess of naturally wavy, shorter hair) and no makeup, no nothing special on! I love when even when you do feel like garbage run over and really havent done anything to look good people still think you look good probably bc of your mood and they dont see the fact that you dont feel good! I actually do not much like talking about how I feel (a product of too many drs maybe) and so days like today when I was feeling "better" but still hadnt done anything in particular are (perhaps selfishly!?) mini mood boosters, reminders that what I have or am feeling doesnt have to get the best of me! =)
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