Wednesday, August 10, 2011

Post-op 1; Day 2 Revise that Revision / Discharged Home sweet Home!

So my neurosurgeon came by tonight and wrote the discharge papers - 3 hours later and I was released from hte hospital - rhat was about 9-9:30 we got out of UW! She had come by around 6! She asked me what would be a good date next week early in the week to see her and bc I cant do mondays (infusion) we agreed on tues and she wrote me in to her phone calendar after some other patients she made special appts for. She said this time slot woul give us more time to talk and go over our thoughts, decisions and questions for each other. She also said I should call her nurse Lisa tomorrow (thurs) and she would tentativelly probably pencil me in for surgery either on weds morning (a normal clinic day for her but she is free that day or thurs morning) and the swelling has decreased by then and my headaches go away we would just cancel the surgery date. I am so increduby thankful to her for how out of her way she has gone to try and help me and for taking her time to talk to me and to set yp surgery if we do need it on a day she doesnt have hee normal schedule!

Her plan would be either 1 of the 2 LP shunt valves or tie of the LP shunt valve at the lumbar incisio and we go straight to the VP shunt and she could try she said to take the VP shunt catheter and when tunneled down to my peritoneal cavity unattach the LP shunt flank catheter and reattach this peritoneal cathether from the old shunt to my the new VP shunt. She couldnt guarantee this would work but thoughgt it might! She said she would have to tie off the LP shunt bc two virtually competing shunts would cause very many problems with headaches and I imagine to with spine issues.  I have the 2 dressings covered yet and the lumbar incision has actual stitches so those will dissolve on their own and the R flank incision  will heal and the glue dissolve on it's own.
U;ll update again when I know more or with more news,
Take care,

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So my Neurosurgeon stopped by this morning before her clinic and we talked for about 10mins. She is also coming back this afternoon so she has more time and we will lay out a timeline or plan. I am so tired right now (1 hour of sleep monday night and about 3 hours tops last night) so I apologize for sp errors and grammar. The more tired  I am and the headache combined also makes for worse vision making it harder to see clearly what I am writing at times.

She talked about giving this surgery revision a few days to see if the swelling along the lumbar incision to the flank incision decreases and see if this then causes the CSF (cerebral spinal fluid) to better drain through the shunt.  Swelling could be preventing any CSF from getting .through the valve right now. Though ive not had that problem in the past - with all the past revisions I either had low pressure headaches initially for a week or I had immediate relief of the headaches. She thinks though like I said yesterday that May's revision and initial 4-5 week H/A reprieve has more to do with that fluid sack in the lumbar incision inintially acting as a drain.   She also said she had 2 emails from 2 companies this moning that also make LP shunt valves - 1 is the company that makes my H/V valve and the other I believe may have been strata but cant remember off hand. One of those 2 valves I was wrong about when I said programmable valves do not work in LP shunts as she said the one company now offers this type of LP shunt valve. She did say if the H/A's dont go away we will weight the potential pro's and cons of another LP shunt revision (further scarring, also has the increased risk of failure still bc of catheter size and shunt locxation outside of/and below the venticles which is where VP shunts are placed.,) It is something im sure we will come to a consensus together about as she is incredibly awesome about making decisions with her patients not for her patients.

The other things where she talked about tapping the shunt today but was concerned with the pain this would cause due to the incredible swelling at the incisions and sio while it would be beneficial to get CSF off if even for a few days we probably are going to wait till next week to give this all time to heal. 

We will begin to outline a plan of action today and if no headache decrease/relief begin to put it into action at next weeks follow up appt. in her office. One additional thing she mentioned was tentatively penciling in a surgery date so she could get me as first case of the morning (5:30/7:30) and so that we wouldnt have to wait weeks to begin whichever approach we would decide on. Ths would allow her to be able to get a surgery date sooner and us not have to wait so long as if we didnt schedule surgery until after I saw her next week. She really seems to want to keep things moving toward finding answers. She talked to my parents yesterday about another of her patients who she has been revising the shunt valve on (not sure if a VP or LP) for many times now and just compared it to my case - how this little girl just had surgery last week w/my Nrsgn and also woke up with the H/A still thee and how she (nrsgn) was cont'ing to look foranswers for this patient of hers to.). If by chance the headaches would decrease and the valve seems to be working next week would then just cancel the surgery date,

I will update after she and I talk this afternoon.

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