Dr.Bragg's Nurse called Monday with 2 thoughts. The 1st being Dr.Bragg thinks moving the TPL Shunt catheter (the tip which sits in the pleural space) would help the pinching/poking pain that occurs quite intermittently (seems to be when the shunt may be trying to drain?)
Per the CT Scan done last wk from what Dr.Bragg told Lisa (her Nurse) the tip of the catheter appears to be sitting up against the lung space (maybe she explained it as the chest wall, not entirely sure) and so with General Surgery Dr.Bragg (along with General Surgery) will adjust the location of this catheter. It should be a relatively straight fwd surgery from what they said and we can hope! =)
In all reality I have zero desire to have another surgery but at the same time this just keeps on recurring day in and day out now and literally days like yesterday there where periods when this was occurring it almost takes your breathe away when you breathe in. It doesn't occur constantly (thankfully) which I am sure makes it seem to some like why would you want to go through a surgery for that but I can't explain nor really do I have to explain my decisions.
I am hoping as a secondary affect this adjustment might also help the leg/nerve pain (starts almost low back travels down L buttocks to the back of the leg down and begins when standing or sitting any period of time).
I don't think Dr.Bragg is planning to adjust the proximal (end) catheter which lies in the spinal canal, from the MRIs I think she had said something along the lines of that distal (end) catheter was sitting closer to one side of the spinal canal than is normal which she thought could possibly explain the leg/nerve symptoms.
I am hopeful even if it might be naively so that adjusting the tip could perhaps relieve the spine-nerve symptoms to?
As good would be if by a slim chance it helped the positional headaches to; these occur some during the day but most definitely worse at night/morning if I don't sleep staying propped up. These H/A's do improve after a few hours but reoccur some throughout the day just much milder.
This surgery was originally scheduled for next Tues but b/c Dr.Bragg needs the General Surgery Team to help her move the catheter (due to so much scar tissue, especially from the repeat OHS (2 open heart surgeries) so now surgery is actually scheduled for Mon.
Per their wishes i'll have to be at UW at 8:00am to do labwork in the Surgery check-in area. This is in order to check INR, which apparently if it where not low enough they would cancel surgery? I don't quite get that part as they can do plasma to bring INR down
to a normal/surgery appropriate range if it had been to high? In any case instead of stopping Coumadin 3 days prior to surgery which is Cardiology's wishes, Dr.Bragg's Team
recommended I stop today.
Cardiology called Monday afternoon after doing another INR level (while at ERT), that level was high (3.63) so their plan is (was) to keep the dose the same.
After surgery we'll re-start the Coumadin again which will likely be the same dose (8mgs, 4 days, 6mgs, 3 days) as now.
INR testing would resume 24hrs after surgery and then once I am out-pt.
The Pre-Op Appt promises to be interesting, my PCP is out on Maternity leave (I am hopeful she comes back on her regular schedule and not another PCP who goes extremely part time but we'll see and is what it is really.
It definitely does make it easier when it is one dr routinely doing pre-op's and coordinating various other aspects of care..
Anyways the pre-op is actually at a completely different Dean Clinic in Madison and with someone I've not met so I am hopeful things will get in in time, Dr.Bragg's ofc has to have the paperwork by 4pm. Anna, her Secretary asked me to call at 3 Fri to verify if they'd received the paperwork and if not she (Anna) will call and work on getting it. I think they really want to make this possible for Mon.
On a different note the 3 Genzyme Reps for WI will be in-state next week, we had originally planned to have dinner but then went to plan B. Instead as of right now, we're
planning that the 3 will come to UW Tues., morning.
Karen is the Patient Liaison, Carol is the Drug Rep (and actually the only one from WI), Amy is my Drug-Insur. Case Manager at Genzyme and is from Boston. I am looking fwd to meeting Amy and Carol and seeing Karen again! I guess if nothing else this will be something to look fwd to given I am not that excited (at all) about another surgery. =/
Will update when there is anything new,
Thanks for stopping by,
Erica
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