Yesterdays shunt tap was a little better than fridays although towards the end caused the same side and back discomfort which to me means there's definitely some connection between that pain along the shunt line and the shunt issue.. (??) It took about 10-15mins for Dr.Bragg to get 20cc's of CSF (spinal fluid) off which compared to when I had the external lumbar drain we could get that amount off in a matter of minutes as the flow was so great (fast) due to pressure. While draining during the tap she also commented that it cont'd to be slow and sluggish and then there was spine/CSF debris and blood tinged at one point both of which arent good things but she also thought maybe that was what was intermittently clogging the catheter - we also turned down the shunt to .5 so both the VP and now the LP shunt are at the lowest settings as we thought it couldnt hurt and maybe help.
She was looking at the most recent thoracic and c-spine MRIs and commented how little spinal fluid there was at many levels and in one area was less CSF than a thin straw or maybe it was that it was equivalent to that in size. I asked if she thought the headaches could be related to that but she didnt think so mainly bc we've gotten headache relief with these shunts. The LP shunt catheter I believe she said sits at T7 which is the mid-upper back of ones spine and pretty well exactly where I would get the discomfort before (havent gotten it now in well over a week). Thankfully the VP shunt cont's to work and so picking up some of the slack.
They have an appt set up for monday to fup with her of which I probably will have to change if they want me to keep it as I missed ERT this week already and there isnt a nurse who can come in and do it at CHW due to their schedules. Missing a single week isnt to big a deal. I think Dr.Bragg just had wantd to possibly tap the shunt again see how it flows and she mentioned having talked to her partner and some things they thought about if we did end up back in surgery to revise this shunt. She was going to look up to see if the external lumbar drain catheters are the same size as the catheters used in LP shunts as she was curious if one was bigger would that work better. She also said that if they did have to revise this LP shunt she would avoid the current Lumbar incision (although I didnt think to ask if they would have to go in to the old incision to remove the catheter or could it be done through a new incision). She also commented again how they would try to insert a new catheter more superficially and higher up (again not sure what that means).
Last night im unsure if it was because we took off that 20cc's of spinal fluid and turned down the LP shunt valve to the lowest setting (figuring even if it wasnt working right maybe more fluid would get through temporarily I think and no harm at best) on top of our having pumped the VP shunt numerous times (she showed me how to do it and said when the headaches get bad I could go ahead and try pumping the reservoir to see if it would help more fluid drain and thus reduce headaches to make up for the sluggish LP shunt) but I was so aweful feeling last night. (during the day I felt great after all this!) I ended up throwing up 3 or 4 times, had a fever (highest 102) and finally took some diazepam I had left over from a surgery months ago as I knew that would help the vomiting and maybe help me sleep. This morning I feel somewhat better though not great and fever seems to have went away (99 vs 100.4 and 102). If it gets worse i'll call them back but hopefully doesnt and can just wait till Weds or Thurs to call and give them an update.
Stay tuned, never seems to be dull - although it really could be exciting in a better way..
Erica
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