Well I never did write about New York at the APFAN training meetng thurs-sat but the flight out of Madison went well, lay-over in Detroit was just the right amount to stretch and walk around a little and the plane from there to Albany was much bigger and more room to shift which was great! Our meetings started right away thurs around dinner time and ended about 9 at night, Friday started at breakfast 7-8 and then we had meetings/training until 8 or 9 at night with a few short breaks and 1, 2 hour break from 4-6 w/a reception rom 5-6 jointly with Albany Medical Center if we wanted to go.. Sat began again early and emded around 2:15 and by then I was due to head to the airport which I rode with another Leader from Iowa and her husband - she was a Pediatric Nurse and I was getting tips from her for our Pediatric Pain meeting at UW. Susie and I and 2 other leaders where on the same plane to Detroit and so also spent time at the airport talking firther. I got in to Madison about 8:30 sat night and was home shortly before 10 after getting my bag. Sadly I found out monday that Susie my fellow leader from IO passed away monday evening due to a unexpected brain aneurysm - this was shocking and sad due not only to Susie's wonderful addition to APF and one of the leaders I felt closer to as well as having just saw her 2 days prior made it all the harder. Her fineral service is today and I pray for Stephen her husband and her family who where blessed with such a wonderful wife and mother.
Monday I had teh usual ERT and that evening I began havng headaches again and woke up tuesday with estreme nausea and vomiting - after this went on for several hours I called my neurosurgeons nurse hesitantly because I just didnt know if I should call them or not. I have such a hard, very hard time deciding when to cal a doctors office regarding symptoms./ The nurse (Lisa ) advised me to go to the ER at UW and she would alert my dr (who was in surgeries otherwise they would have had me come in to the clinic) and have the resident meet us in the ER. Within 2 hours (I live about an hour from the hospital) I was in the ER and my Dad had gotten off of work. At the ER they started an IV (in Port) and fluids + dilaudid and zofran. An brain MRI was done and after a few hours and the Neurosurgery NP, the resident and later on shortly before being admitted up to the neuro floor my surgeon stopped by to share her thoughts to. Initiallly they thought maybe I would just need to be admitted over night and could get out weds. My surgeon depressed the shunt valve initially and said this was very sluggish to refill which suggested a problem to her. They then did a shunt tap withdrawing CSF fluid and also had problems with this. The resident couldnt easily get CSF to drain out and said it was very slow. He pressed on various sides of the valve to try and get it to flow with little success. Both he and my surgeon said this would suggest that my ventruckes due to being small to begin with where collapsing on the catheter but then like a straw when you suck out a shake tthey initially get clogged and collapse and then pressure builds up so forcing the ventricle open and CSF out to drain through the shunt relieving the headache but then the cycle would start over again and again. The decision was made weds afternoon to do surgery so that was scheduled for today (fri) and Dr.Bragg suspected ahe would end up replacing the proximal catheter in the ventricle to the valve.
Surgery was today at 10:30 so I went down to pre-op from my room quarter to 10 and the anesthesiologist + CRNA and anesthesia resident came by. Showing just how often ive been here in the past 4 1/2 months the CRNA worked with me at my last surgery and her + the anesthesiologist said they had poured over my prior surgeries both these last 5 here at UW and then those previously done at FMLH. I think my neurosurgeon makes it a point to make sure the anesthesiologists know to use the fiber optic scope and about my airway history. As with other surgeries they let me skip the pre-op sedative and I was fully awake while monitors where hooked up and the initiation steps/time out where taken. I was then put asleep by the mask which usually takes a bit but is such a weird feeling! Apparently my neursourgeon had a conversation with me in post-op (which I dont remember and she said as much) but then she talked to my parents and also came up to my room after she was finished with her next surgery. She said she replaced the prxximal cathether that goes in to my ventricle as this was coming out of the ventricle and initially had not been placed as far in to the ventricle. She re-threaded it further in the ventricle and said that the catheter was clearly clogged. I think she said right up to the valve and this nas why the valve wasnt working well She said that when she opened this area up CSF came shooting out as there was so much pressure built up. She thinks this will help and provide headache relief but if it would not or the headaches came back she would plan to place the second valve which she would-place further down in the shunt catheter near my upper chest/shoulder and this would if I am remembering right aid in the resistance and thus allow fluid to drain more easily no matter the pressure (how fast the CSF came through/drained) - I am not 100% sure this is how it would work but I know it had something to do with flow of CSF and helping prevent clogging and fluid back-up thus headaches.
I am in a single room (all UW rooms are which is very nice! Since ive been here so often ( =// ) the nurses remember me and everytime id go for a walk several stop and say 'hi' or come by my room to see how im doing. Much like with the anesthesiologist its nice to have familiar faces but at the same time it means ive been here to much! Atleast the majority of nurses are very nice! My neurosurgeon took a picture of the clogged catheter and ventricle and showed my parents but bc she was coming by after another surgery when she came to my room she said she'd bring the picture by tomorrow. I am curious to see it and going to ask if I can take a picture of the picture! How interesting and fascinating since it is of my brain!
She also said that another sign of differing response to the hydrocephalus (build up of CSF causing the abnormal high pressure) was that most patients when their ventricles collapse would feel better lying down but I am the opposite and laying down during this makes my headaches worse vs relieving it. She said to my parents she could somewhat understand how the other neurosurgeons including my former one who initially placed the LP shunt did not believe I was having pressure related headaches bc I present with such different problems of the hyro/shunt failure but she did not agree with their essentially blowing me off. She felt that more should have been done + she could identify clear signs pointing to pressure secondary to the MPS and she really felt she could continue to help.
My Mom brought up to Dr.Bragg about my hesitation when to call or go to the ER when having these headaches or nausea/vomiting and my worry about going if there wasnt really an issue. Dr.Bragg said that if symptoms recur and I have no other symptoms of cold/flu I should not hesistate to go to the ER as I have not been wrong so far about the shunt and when there was an issue. She just said she knows I know my symptoms. (how wonderfully awesome to hear a provider say this - I love her for this alone and her trust and sapport of me!!!)
If I do well tonight and feel okay Dr.Bragg will release me tomorrow which would be nice since ive been here on the neuro floor since tues morning! (ER till mid-afternoon then up to the floor).
Will update when I know something,