6/7/11 11:30
Just a quick note - so I know I did a pretty fantastically bad job of trying to describe the surgery I had in addition to the shunt replacement last week but here is a very brief description and as I thought it essentially did just to my L3 level what I had done at C2-C4. The difference is that at cervical decompression I had plates and screws put in to hold the door open in a 'open door' type fashion done by a orthopedic spine surgeon at UofMn and with this surgery my neurosurgeon removed a piece of bone (lamina) to create room and then put the nerves where they where to go instead of sticking out and scarred together. In addition of course amazingly my Nrsgn replaced the shunt itself into the L3 space - dont even ask me how that is done - I am amazed actually and have so many more questions really out of sheer curiosity in some sense.... I was looking at previous MRI from several years ago and it says the level below L3 is also the same as L3 was but I think my Nrsgn said some of the nerves she repositioned she believed where not from the actual level they where scarred at or something to that effect. I will have to ask her about this next week - it makes me nervous a little and to wonder is it the shunt thats causing these scarring issues or is it both this and MPS deposits? Would be interesting to see her take.
I am staying at my parents for now and will update about that soon - take care.
Good night,
Erica
So I totally feel like ive been in a cloud this last week and completely cant believe an entire week has gone by - shoot a week ago at this time I was literally still in surgery with an hour is left - and I totally never thoughgt id be going home with these differences - even if short term they are differences that one never expects to happen to them! The week has been filled with highs and lows (and yes I realize what is possibly high about surgery and a different outcome) that sometimes had me in tears and frustrated and other times like now I feel like things are improving even if ever so slowly. The highs right off the top of my head have been that I found this neusorgeon, that she is so cautious, seems to really care and took her time in surgery to do her best to try and relieve my headaches. After so many years of near constant being told it wasnt my shunt and that I was to focused on this it's nice that the solution really was fairly simple (yes in a totally complex surgery way) and my Nrsgn didnt need to do further testing bc she immediately found what she thinks was the source of the headaches. (shunt valve). Other highs have been some great nurses and staff, residents that where actually pretty nice and not bossy-kow it all as ive encountered in the past. Lows of course where waking up from surgery with no headache and thinking I had sailed through surgery despite the unexpected long length really well despite the spine nerve root decompression/complication and then several hours later losing sensation in bowel, bladder and down entire left leg and pain + tingling on touch at bottom of foot. That was hard and at first I totally didnt comprehend the magnitude of it nor did I really get that it ment it would be a undefinable recovery ie we couldnt put a date on when sensation would return and thus I am walking out with a walker today. Still a meet me in the middle point of that is that I am atleast walking out!!
I asked Dr.Bragg about which levels she placed the shunt at as a couple people/providers have asked me this and I honestly didnt know - the actual shunt is sitting at L3 and then below this is where she had to open up actual bone and clean up/decompress the nerves roots that where bundled together (she said she was almsot amazed by this as it is so unusual and was just so narrowed in the area she had to work in + when she took bone out which they do not have to do in simple LP shunt placement there was just virtually CSF fluid from chronic shunting and lumbar punctures. She then had to release the nerves that where scarred into a bundle and place them back into the proper place (in the spine?) and then place the actual shunt catheter tubing into the area she had jusr worked on. Thus the reason for lenght of surgery. She said the pain should start to go away in another week, and rhat she cant tell me a recovery date for the bowel/bladder sensation it again could be 5 days or more weeks but bc of the delay in onset of loss of sensation that is a really good sign. I am not quite sure why and keep forgetting to ask (i'll ask at fup it's not that important) but apparently she opened all 3 incisions as even my abdomical one has surgical glue but I had no pain so I know she didnt have to fix anything in there - not sure what they would have done w/that incision as all issues where with the flank/middle incision and lumbar incision which apparently is now quite a bigger wider and longer then it was.
Worked with PT for a short bit today and she thought even stairs had improved a bit and showed me another way to do these. They are recommendinng doing this 2x's a week so while it looks like my therapist whom I really like will be able to do this it really depends on his schedule to if he has openings this quickly 2x's a week. In the mean time I will get approvals through my insur case manager who is usually very helpful with this sort of thing. Home health is being worked out re my insur paid for the walker vs us renting it and having to return it and about the cathethers and anything else - this is being done w Social Work.
Dietician stopped by and she actually gave me what might be a really good tip - since my diet is so terrible (I dont drink much soda or juice but also dont eat much meat) my providers have always recommended a multi-vitamin of which ive tried super expensive ones, and lesser ones all with terrible nausea and so this dietician actually said why not jsut try a simple kids flintstone so your getting sone and do drinks like ensure - the good thing is my weight has always stayed pretty stable despite all the nausea, vomiting, etc from headaches.
Today is my beautiful light of my life, son-shiny nephew Zander's 5th bday - 5 years ago today I first met a neurosurgeon and fist talked about shunting - 2 weeks later I had my first LP shunt. Zander means the world to me though bc of his fantastic smile, funny personality and his quirks that just make you laugh even if sometimes you maybe shouldnt! He is a doll in a little boys body! I LOVE him like he is my OWN and CANNOT wait to see him!!! He totally made my day when he visited several days ago!
I will maybe update later when I am home - there is a ton to do ie have to go to my apt with my Dad who is picking me up here at UW (took parrt of afternoon off and also taking thurs off for we can go to milw for infusion as mt old ERT nurse has agreed to do my infusion) - have to get clothes, my cats, all my bills to pay, and just anything related to everyday. Have I ever said I hate staying somewhere else just bc I dont have the organization and laid out - know where everything is atmosphere of my own home and cant just go grab or make what I wanr when I want it??? I love my parents dont get me wrong just cant wait to be in my own place!
More soon,
Erica
discussing w Deb the not being in control thing
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