So ive neglected any updates what-so-ever to basically anybody over the past 1 1/2 weeks - last week I spent parts of several different days by my sister and nephew (5) and niece (9mo) but otherwise really didnt accomplish alot other than a few trips to the grocery store and pretty well avoided any phone calls as much as possible. I just wasnt in to talking to anubody yet other than those who already knew what had went on. In other words last week still kicked my arsh from the previous weeks surgeries and I pretty well ended the entire week adjusting to the new shunt. healing the incisions and being low key. Today I woke up about an hour and a 1/2 early thinking about my life and just how surreal it feels much of the time - alot like some of the stuff seems so like it 'happens to someone else' that even though I am experiencing it and in the case of all these shunt problems while it is very real it is also very surreal. Maybe thats a good thing I dont really know - maybe the ability to think about it little by little and not let it all stop me from pursuing those things im interested in is good but then on the other hand maybe I have such a difficult time talking about "how I am doing" bc it still doesnt always feel like it is happening to me. I know thats probably maybe not normal but surreal is exactly how it does feel much of the time - real but surreal!
I follow up with my neurosurgeon on thurs to get the staples and gauze taken out of my head this coming thurs and removed the dressings and tegaderm from my stomach and side incisions over the weekend as it was getting pretty darn itchy. The 2 stomach/side incisions seems to be doing really well - pretty uncomfortable when I lay down (propped up) at night and where my bra sits on the R hand side it seems to rub right on the catheter which literally is a pain and not all that comfortable. When I lay down at night this same areaas well as the abdominal/stomach incision are what cause pain but I think it may just be bc the catheter sits so close to the surface of my skin and there wasnt much fat for my neurosurgeon to tunnel under. Since ive lost like 6-7 pds on an already thin frame in the past month that really hadnt helped this shunt palcement/tunneling. There appears to be some fluid around the abdominal/stomach incision catheter incision as well although this may be normal and may go away so im not particularly worried about it. The remaining fluid at my lumbar incision where my neurosurgeon cleaned off excess/built-up CSF during the VP shunt placement hasnt absorbed yet and this is very noticeable though a very small amount of CSF as a pressure feeling on my back and back pain/discomfort. Im hoping it reabsorbs soon! Ive not had botox in close to 6 mo (normally every 3 mo) in my mid and upper back/neck as well as not being at PT for about 2 mo now due to the surgeries and other things so between that CSF build-up and the other 2 factors my mid-back pain has been worse again but I think with restarting PT soon this may help and I cont to stretch out each day which helps it from being worse.
A for how th VP shunt is it definitely was not a quick fix like the LP shunt revision/back surgery in may with this same neurosurgeon ie while my headaches where gone due to the EVD (external drain) having been in for 4 days I did have to adjust to the shunt placement and new mechanics which took about 3 days but by monday afternoon I could notice a noticeable difference though not perfect. It also took till mid-week to get GI system back to a more normal from the increased pain meds and anesthesia and that I do think has a significant impact on the shunt. Being on a new pain patch vs oral long acting pain med has also helped and I generally only take 1-2 of the immediate release pain med nowdaily. It all combined to having a more normal GI system which is great - not perfect but still great and better!! By late last week I also seemed to be acclimiating to the new shunt location even better and by this morning finally having less headache when I woke up in the morning. (when my neurosurgeons nurse called me early last week to pass along a message from my nrsgn about my dr wanting me to know I could wash my hair if I covered the incisions w a dry wash cloth (they still have the gauze type stuff to over sutures and held by the staples) she asked how I was doing and we talked about a few things - I asked her if the morning headaches where just something that ones body acclimates to and thus get fewer and shorter lasting headache in the morning she said definitely and that she wuld expect within a few weeks I wouldnt have the headaches when I wake up. Yay!! I would be lying if I didnt admit then when having something new put in ie the initial LP shunt 4 or 5 years ago and this VP shunt 1 1/2 weeks ago I dont have atleast one moment in days when the surgery incisions are still healing and body still adjusting that I wonder to myself "will these side effects/surgery symptoms go away this time?' or "Did I make the right decisions doing this surgery?" but inevitably I usually end up adjusting fine and when the surgery ends up being a bit benefit then I know again I made the right decision and worth whatever intial pain came with it. I think sometimes it's just the hard part when answers arent always clear or even in this VP shunt case when we knew from the EVD that my symptoms cleared up dramatically and that a VP would likely help that you cant help but still second guess bc your still dealing with adjustment to something new in your body and big or small figuring out how it will or wont affect you. You also with any of this surgeries deal with so much discomfort to in turn feel good but sometimes when you do feel bad it isnt that easy to know if you made the right decision. In any case I am glad my neurosurgeon too her time, gathered info and that we are at this point in this post-shunt surgery and hopefully the last shunt surgery for a long while. 5 in one summer was definitely enoughh in my book!
On a different note we are headed to the Mississippi this weekend for 4 days, myself, my parents, my sister and her family (4) and my brother and his family (3) - should be fun and chaotic and since it is my parents 30th anniversary, my brothers and sister in laws anniversary (4 years I believe) and my nephews 5th b-day I am betting we will have a great time!
Will update on thurs appt sometime soon after or next week.
Erica
ps i'll also update pics from the APMwalk/run this past sat in West Allis which proceeds go to APF and so myself and my regional manager who happens to be here in WI both attended. Was a fairly nice morning and a good time. :)
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