Tuesday, April 17, 2012

Surgery time, External drain

Surgery is at 12:15 tomorrow (Weds) with arrival at 10:15 in pre-op. We left the Port accessed from ERT (infusion) on monday so that part is taken care of unless the anesthesiol. decide they want to also use a Peripheral IV which some do given the pre-dosing with both antibiotics and solu-cortef (aka stress dose cortisol replacement).

I had emailed Dr.Bragg, my neurosurgeon last week but knowing she was out of the office and might not get the email. She replied back today (love that about the providers of mine who will use email!) in response to 2 questions I had. I had asked her if she thought we should do MRIs while the drain was in to make sure CSF is flowing corerctly and no compression and also if the external lumbar drain worked would we do the 2nd shunt placement right away this admission a few days after this drain placement or would she do it at a future surgery-admission. She felt that it was better to remove the external drain and even if we see benefit from it/symptom resolution given the risk of infection (and my previously having had a CSF infection back in Nov/Dec for which we had to take out both shunts and replace the VP shunt + 6 weeks of oral antibiotics) we should do the 2nd shunt placement at a future date and I guess we will figure that logistics out if this works. She plans to leave the external drain in for 2-3 days.

This is both good and bad - bad because it would mean having to do another pre-op physical (simple enough but still takes time and yes, I can piggy back it with something else but it's still another appt) as well as another admission and surgery. Maybe I am getting ahead of myself since we dont know that the external drain will even work I guess its more that as a patient I hope to be done with this soon and done with having to bother my neurosurgeon (not that she ever says anything and we do get along well and she truly seems to care as does her team) . In that mean time of course if the drain does work I would feel better, then feel worse then feel better again. Yikes! 
On the good side of it is that Dr.Bragg obviously has been thinking about this and cares to think of the little details like out past surgeries and issues and cares about trying to prevent infection/infection risk as well as not overwhelming my body. I can and do appreciate that about her.

Overall I guess it will just be a 'lets see how it goes' kind of week with this external drain and i'll take the rest from there. With the VP shunt in place we do get some symptom relief and benefit. -- Otherwise today I was supposed to see my Pulmonary dr at FMLH but rescheduled that as I was purely exhausted (even with going to bed earlier than normal the previous 2 nights). My PCP and Cardiologist want her opinion on the breathing issues see if she can add any thought and I am curious if she has any suggestions for these episodes (which we think are cardiac) of feeling like I just am not getting enough air/difficult to get air in enough. I currently take the beta blocker and lasix (water pill) partially for this as well as Xopenex an inhaler at night and when needed during the day.  Other things coming up which ive rescheduled for this surgery include with the new Orthopedic dr the end of the month, the Neuro-Opthalm. and then various other appts like Cardiol. which are otherwise just scheduled. We will see!

I'll update sometime tomorrow or soon after.


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