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)
Nov 26th - Happy Birthday Lis! (my niece)
My Insur Case Manager called late this afternoon and was a nice call; while we dont always agree on everything we talked about the Hand surgery ( I had emailed her about what my PM dr and I where talking about) and our thanksgivings and I generally feel a bit more settled when I can just hear other people's opinin of what I am thinking about/wondering about and in some cases worrying about. I have gotten a little better at asking for advice although I still if I dont feel comfortable with what someone else might think will stick to my feelings and sort through things on my ownmore often than not, I still dont quite kmow what to feel about this hand surgery but the surgeon himself seems to come recommended albeit my concern as ive stated before I think is what does (or more likely does he not) know about MPS and how that affects CTS and the other procedures he is doing and although I actually in reality dont mind if someone else does the follow up it does still make me wonder howi nvested is a surgeon in his pt if he isnt interested enough in doing his own fup t at some point?
Monday is the surgery with Dr.Bragg to externalize a portion of the 1 shunt and let it drain outside the body for a few days to see if under-drainage is part of our problem and then if so/if this works well we will go back in and re-internalize the shhunt in to the pleura (chest) I guess. I will be happy when it is over. I dont actually know how many days we will drain over but wouldnt think more than a couple days and then re-internalize it but should call and ask about that I guess. I really want to get the night and mornings with these shunts figured out as I think we are so close but I am just not enthused about this (not that I am about any surgery but this one especially I think) but I guess it's the price yah pay and I do think we are doing the right thing as the 2nd shunt has helped but just not like w the external drains and that is what we want to understand or figure out what is different.
Since I have ERT on Fri and surgery is next Monday one of my infusion nurses who is also on the access/Interventional Radiology team at CHW agreed to re-access my Port on Fri so I will just have it in for a few days on not a entire week but also wont have to have Anesthesia deal with accessing it. Much better to have nurses do it ahead of time then have Anesthesia try to convine me they can just do a peripheral IV or wait for access team at UW.
My Sunday school kids sing the following sunday (9th i believe) and would like to be there. :) I have class this sun (The birth of John foretold) and then the 23rd which is a Xmas Party for each of our classrooms so should be a fun time with the kids and probably figure out a activity and a craft to do during the hour that day.
I actually am atleast 3/4's done with Xmas shopping and the hardest 2 (My Parents!) are done - I just have part of my sisters, my nephew Quinn, part of my niece Alissa's (b-day and Xmas) and part of my other nephew Jordan's + cat toys left! I am waiting for 2 things I ordered on ebay for my nephew Zander 1 of which my parents and I split the cost on which is nice so then being he is my Godchild I could get him something else to. :) Ive had alot of fun w Xma shopping this year and ebay has definitely helped to!
I want to add that although I didnt write anything for Thanksgiving (this has been a week-long post in progress) I am very grateful for my family, for my nephews and nieces and especially my sister for letting me have Zan whenever I want basically and as well to the family I work for (I love this job) and those people in the past year who have helped me in various ways. I really appreciate all that people do and as well for those who believe in me and want me to work for or help them. :)
Thanks for stopping by,
Erica
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