Today, I saw my PCP for the pre-op physical for Dr.Bragg's shunt surger(ies) and for the Hand surgery and kind of had to laugh; I knew from the start (and was ok with) that my new PCP knew pretty much nothing about MPS before she had met me but she did some research/homework before our first mtng and atleast knew what the big issues where going to be. (her doing that research alone proved she was willing to learn.). Today she commented that this should be the last time I needed to see her for a pre-op appt for the shunt stuff for a long while and we shouldnt ever have to do a hand surgery pre-op again given this surgery (3rd time in 10yrs for R hand) was going to be so extensive. I am unsure if she (probably) just thought I was kidding as I laughed and said something along the lines of "I am sure we'll be doing this again in a few yrs for the hand stuff" the reason being for my saying that of course is carpal tunnel in us MPS pts isnt the same as CTS in non-MPS pts/general population as for us it is caused by GAG accumulation and inflammation and doesnt matter how extensive of a surgery surgeon do it will recur and the surgery is more to preserve nerve function and relieve symptoms. My concern all along with this Hand surgeon has been I dont think he really gets the MPS factor and I think he thinks (it seems like) he can make it go away for good this time by doing the additional things and protecting the nerve with grafted tissue post-release. I am a lot hesitant and more than a little reluctant how this will go. =/ ?
Weds Nov 21?
I saw Pain Mngmt for fup on Thurs and she of any of my providers knows me very well and we where talking about the carpal tunnel and associated surgery in Dec and I made the comment I thought maybe I should get a second opinion from my former Hand surgeon (switched bc of Insur but he did the 2nd releases on each hand and at same time the tendon transfer on my R hand.) She made the comment in all these years she has known me now (5 or 6) and through all the surgeries she has seen me through (more than 2 dozen in that time) she had never once heard me express concern about if the surgery/surgeon was doing the right thing and she strongly felt I should get a second opinion if even it just means the 2nd surgeon (probably my former) where to say they agreed (or not) with the plan currently set to be done mid-Dec. which is more extensive... I gave her copies of the c-spine MRI and she made the comment my headaches could be caused by the severe narrowing at multiple levels below my previous fusion since the headaches (different than the shunt headaches) are much worse anytime I bend my neck.. I did talk to my Ortho-spine surgeon in Mn's nurse and sent up my MRIs and Flex/Extension Xrays from the past year and recent as well as surgery notes to them and should hear back in the next week or two what they think.
Family pics from Thanksgiving ... Thanks, Jenn! (sis-in-law)