Wednesday, June 1, 2011

Post surgery day 2

Hello, not sure how much of this i'll get through but surgery went on well yesterday with just a couple hiccups. Because intubation was so difficult they just ended up going back to a LMA and doing the entire surgery with my being propped up on my left side/hip. This could bring it's own complications but they managed ok. My Neurosurgeon took apart and tested the shunt valve which is placed in my right side below rib cage and she said this looked 'suspicious' for problems so switched that out for a new one. She also removed the cathether tubing between the valve and lumbar shunt and replaced this. Because she wanted to add a reservoir to my shunt for easier testing in the future in addition to keeping the horizontal/vertical device so she had to take this out and move the entire devices/shunt down a level in which she found an exposed bundle of nerve roots from S1 that where literally sticking out in a very abnormal fashion (these nerves usually sit inside of the spine disc) and which where scarred together. Because this prevented the tubing and devices from being implanted she had to clean out this nerve bundle and go in to the dura which is what covers the spinal canal to repair this abnormality whch she thinks may be from repeated traumatic lumbar punctures. Because of this extra spinal surgery once I woke up in recovery the start to finish time for the surgery ended up being 6 hours vs the exoected relatively short 2 hours to just fix the shunt itself. I also had to lay flat the first 24 hours till about 2 today which was extremely difficult and really ended up being able to only lie flat on one side due to severe hip pain, leg pain and foot pain probably from both being on that hip for 6 hours and then swelling from the nerve bundle repair in addition to shunt placement at such a low level. Medications included teh solu-cortef, dialudid, normal avinza, alternated to oxycodone and then back to the dilaudid both IV and oral. (oral last longer and larger dose).
Today my Nsrg added toradol for inflammation, a higher dose of my normal lyrica for neurpathic pain and dexamethasone for an additional steroid to try and reduce inflammation in my spinal cord and thus her thought was in my buttocks, hip, down the leg and bottom of foot which that feels more like little zaps of pain and the rest is like deep nerve and musclular pain.
This afternoon after having the foley removed last night and a whee bit embarrassing straight caths I was able to get up with gate belt assistance and slow move across the room to go to the bathroom. Tonight I got the last dose of solu cortef (cortisol replacement - stress med) and will go to higher dose oral hydrocortisone tomorrow tapering down for 5 days. Im not sure when im getting out of here I havent walked on my own and in a lot of discomfort yet and my Nsrg hadnt given any aindication this morning. Yesterday after surgery when she went down to talk to my parents and then when I was in a room she told me maybe thurs or fri. We will see. My good friend Deb has been a huge asset as far as getting a good pain mngmt routine down and so while she isnt really one of my providers (we work together at APFAN here at UW) she went way out of her way to help and talk to my drs to work out what she felt was a best case plan of care. I am really thankful to her. One of my pastors from church stopped by tues later afternoon after I was in a room (also an hour drive down for them) and so while my hip was aweful feeling bc of the time on it in surgery the rest of my body wasnt yet worn off of the surgery meds. I am grateful to that kind time he took and that I have a church that cares even despite my never having really shared info about my medical history or previous surgeries with the church in the past. (ive been going there about 2 1/2 yrs and went to the same synod in the other cities I lived in also and at the church I grew up in some including the one pastor knew of my medical history and at the church  I went to in college which was smaller but same synod this pastor also knew of what I had/was going through.

I will update again when I have some time - needless to say I am just grateful that what I suspected as the problem really did turn out to be the source and my headaches have improved a great deal while also having NO low pressure headache which is something I had for atleast a week tapering down after all of my previous shunt surgeries! Im not kidding when I say this Nrsg is quite good and seems to really want to do everything she can. I think I accidentally stumbled into a truly good set up and provider - which makes me feel a little grateful and lucky bc in the past 6 months this is the 2nd new provider ive found that really seems to go out of their way to make sure things are the best they can be while also taking the time!

More soon,



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