It's been a few days since I got out of UW and since the ICP was removed - sorry for the lack of an update or any news what-so-ever. To say this has been a long week might be putting it mildly - ive had really unusual symptoms from this diverse feeling like I had a really tight hat on but from chin up to surrounding entire head (or as if wearing many, MANY headbands) as well as pain or numbness or tingling (some combination??) in my hands which is very unusual might I add! These symptoms have been going on all week but have seemed to lessen with each day which made me just think it had something to do with friday's surgery but then at the same time I have still had these headaches that are worse with laying down and improve somewhat with standing up so I didnt think it was low pressure. ...
I saw my neurosurgeon today for normal fup and was talking to her and her NP about all of this to which they are pretty concerned and also fairly mystified. With my type of shunt it can cause brain herniation (the brain actually is pulled down into the tonsils or brain stem or something to this affect). but the symptoms would normally be improved with laying down and worse with standing up not vice versa as I am experiencing. My neurosurgeon has ordered MRIs which will be done early mornday morning (may turn in to one of those days from hell as i'll have essentially 2 hours of MRIs at UW, then drive a little over an hour to CHW in milw for my 4 hour ERT infusion and a 6 month genetics appt after this infusioin and then the hour drive home from milw - and the drive to UW in itself is also about a hour. May I pull my hair out already? I often wonder why I do these things to myself but in reality the rest of the week is pretty limited on what days I could otherwise do the MRIs and I dont want to reschedule the other appts and meetings I have the rest of the week if possible. My neurosurgeon is cont'ing to talk to some of her colleagues and wanted to run these symptoms past them while also gathering some other info and said she would call me within a few days of the MRIs. Another reason to get them as soon as possible is the sooner we know if it shows something or not and hash out whatever plan happens to be next. I made the joke to my nrsgn that just sticking a straw in my head sounded awefully appealing and she kind of laughed and got this look as if we'd just come up with a really great idea. (could you imagine - ooh Lord though my twin brother and I frequently joke about this and how his tools arent that to different than a neurosurgeons we're obviously joking and I was just joking much the same w my dr which is something I really like about her - humor is a good thing! (sometimes without humor to look at a situation what else do we have when you feel terrible!?) So anyways she then brought up about how even though she had promised no more monitoring devices she wondered if doing a EVD (external ventricular drain or what is often used in head trauma cases while the brain swells and till it returns to normal to drain fluid). This EVD she said while usually placed in people awake she would likely do in the OR under general given my ventricles are pretty small and she wouldnt be able to judge ahead of time what equipment she might need to place it and not all of this could be brought to a patients room as is anyways. This EVD would be able to give us an idea of what I felt like with CSF (cerebrospinal fluid) draining directly from the problem and might give us an idea how my body would handle a VP shunt. There's no certainty that we will end up doing this it's just one possibility. She talked about how I might be having these symptoms now of numnbness/pain and other symptoms as the dynamics of my headaches and situation have changed since the shunt was first placed 4-5 years ago and so what was right then might not be the same "right' now. - I dont quite know how to paraphrase her words so those are strictly my interpretation of what she told me. She also said that in the end we may need to go to a VP shunt but her goal would be to get rid of 1 and only have 1 shunt overall vs having 2 in place. Im not sure if she ment she would just tie off one shunt or not, She also talked about our goal is to get these things figured out so that we dont go in to 2012 still trying to find answers and so that only the summer hopefully ended up being fulll of these surgeries. She asked what she or her team could do to help while we try to find answers and I honestly didnt have an answer - if it where pain we could treat that but it isnt really so much that as it is the sensation of pressure and that is not an easily defined/helped issue. I do appreciate though that she recognizes while I still can smile and joke I am feeling pretty terrible alot of the time and just her offer to try and help in some way speaks miles about the type of provider she is.
I will update when I know more - in the mean time I have been reading a few good books, working on APF - Sept Pain Awareness Month activities - I pray nothing we do gets in the way (although honestly I guess I also hope for answers as soon as possible) but the 2nd week of sept I will be at UW doing our educt'l table for 3 days and the following week I was asked to have a table at the Walk/Run for the APM-APF event in milw area and we are also cont'ing to work on our Peds Pain Awareness meeting for UW though that is a ways out. Earlier this week I also after infusion monday went to my nephews and filled up on lots of Zander time as well as seeing my sweet little neice (7mo) Bella. - Totally worth how tired I was to see those 2 and Zander always says the cutest and funniest things to make me laugh and remind me why my life isnt so bad. Sure the physical stuff stinks but the emotional part of my life is filled with lots and lots of little tykes to remind me that one day at a time isnt such a bad thing after all! This weekend i'll see Zan and Bella again as well as my older nephew Quinn on sun to at the car show here in town.
Will update when there is something new,
Erica
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