Dr.Bragg after coming in to the exam room said to me "your ears have probably been ringing lately" as she said she was talking about me/my case to someone talking about the difficulty we've had with keeping the shunts working and her cont'd, possible interest in actually working at what she believes is the (compliance) problem. In my case she believes the MPS, storage and bone thickness affect the shunts although honestly I can't remember how other than not enough space for CSF due from what I understand the Hydrocephalus in her opinion having gone un-treated for so many years and the skull becoming thicker over the years and thus non-compliant.
I don't know would thinning the bone and creating space mean we could take out the shunts? I didn't think to ask her this question and she said she honestly didn't know if thinning the bone (if I was even open to it) was something that would even be a possibility in my case due to the MPS (storage) but would be something she would have to look in to if we ever got to that point (of wanting to really explore the idea).
She said the idea would be they would literally remove part of the skull, thin off cm's of the bone and this in turn in theory (as they have done in some other of her non-MPS pts. who've had on-going, virtually un-relenting issues w their shunts) gives a bit more space that the CSF has room to circulate.
The 2 worst things con't to be 1. the Pleural incision (where the distal end of the Thoracic shunt goes in to the pleural space) is literally right at or under the bra line and the TPL valve sits mid-back yet (as I've written about) and the valve is very noticeable w/movement.
For now we'll just see how this shunt adjustment goes, hope it lasts but also being realistic know the shunts rarely stay working long but longer would be a good thing and who knows? One day at a time, right!?
I just have to say I am thankful that Dr.Bragg is one of the few providers who is able to look at me and just knows (she always says she can tell by my eyes) whether I am feeling well or not. She doesn't look at if I am dressed reasonably well or well put together, she just knows I've gotten to the point where the shunts when atleast working semi-well I can function and thus make myself look presentable. I am VERY grateful that to her appearance isn't mean her pts. do or don't automatically feel good!
A view of the Codman valve implanted in both of my shunts
On a different note, INR when discharged last Weds was 1.1, today per my infusion Nurse who looked it up (ERT is at the same hospital as my Cardiologist and thus labs are done) was 1.2. Nancy, the Cardiology NP called w their recommendation the next day and I test again on Monday. If level is not yet in range they will up the Coumadin dose (oh joy). She was curious if Vitamin K was given prior to or during surgery to bring INR in to surgery appropriate range though I did forget to ask Dr.Bragg this. It wasn't a big deal to the Cardiology Team, they where more or less just curious and said when Vit. K is given to bring INR down it often explains why INR comes up more slowly.
Quinn, one of my nephews was sitting across the table from me last Sat playing Sequence (and other card games before) and says to me "What is that noise?" to which I replied "I don't hear anything, what is it?" He listens for another few seconds, leans over the table and says to me: "Is that you?" Lol, to funny, I forget that when my heart rate is very fast you can both see my heart beating wildly now on (thin) chest and you can apparently to other people hear it pretty well as I've had probably 1/2 a dozen comments since either of the OHS's about my heart sound! =) He seemed to think that was pretty funny!
I think I wrote about it a while back but I am partnering w the same Genzyme-Running for Rare Diseases runner as last year for the Boston Marathon but turns out the Marathon is Easter wknd. =/ Not only am I unsure I want to give up our families small tradition (easter is my favorite holiday) but the girl running on my behalf just found out from Genyzme they wouldn't allow her and I to spend Easter together. She had asked if I would want to go to Church w her and to her Cousins but Genzyme has a policy against this, against their employees spending time in their homes w patients who get Genzyme's drugs. Odd! I am not sure now if i'll go to Boston or not as the activities are mainly Sat night and then Monday, the day of the race. =/ I am sure I could still stay w my friends but don't really want to intrude on their Easter day celebration. =/ Have some thinking to do to do and talk to my own family. It really was a great time last year and would be really special this year given I was there during the bombings last year and for Jessi and Genzyme's Team running/completing. Just not sure. I do wish Genzyme and other Pharma's realized that patients and their employees spending time together outside of organized activities isn't hardly going to cause the world to end!
Weds's PMR appt for botox was cancelled the morning of, although I admit I wasn't to sad as I was tired and not feeling entirely like going there and then later to Milw. Dr.Caldera, the PMR dr did later that morning call herself, which was unexpected but clearly shows why she comes so highly recommended! She just wanted to ask a few ques's and let me know she was really trying to work out the insur-out of network aspect of my seeing her and if I wanted she thought maybe she could get it worked out within a couple weeks. I am just floored she in what I am very sure is a busy schedule and having met me only one other time would take the time to call me personally!
Will update when I know something or something worth updating,
Thanks for stopping by,
Erica
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