I cant even say how much pain med I took but finally called my Dad around 2:00ish and then the on-call Neuro-Surgery resident bc nothing, nothing, nothing was helping and I was literally pacing from one side (shuffling) of my bed to the lenght of it and back over and over and over for over an hour as nothing would help and everything else made it 30x's worse. The on-call resident said to either come to the ER there and they would admit me or I could be direct admitted to the general care floor or go to the local ER and be transferred to UW. The other option was come right away when clinic opens this morning (between 8-8:30 and see Dr.Bragg plus likely be admitted but maybe something else could be done. Since the resident and I both agreed the ER would be slow and wouldnt be any faster I took more pain med, somehow managed to get in to the shower (interesting feat for sure, should win some kind of ingenious award!) and stood there for no less than 30mins and after managing to get back out I took atleast another hour to get dressed and laid down on the couch (much lower although presents its own issues!!) and managed to fall asleep while the shower heat worked for awhile. I am here now writing this at 5:30 with pain returning especially in mid-back where I wonder if eithe the catheter from lumbar portion of shunt is aggravating nerves or if some kind of over-draining/issue in that area. I am super tired and barely see straight but ironically it is just a tired blurriness and not the 'to much pressure, shunt not working right' pressure blurrines'. I can tell I have a bit of a low-pressure headache which just started in the past few hours and makes me think the shunt is leaking or draining to much but hopefully will get better. I am going to shuffle to the kitchen and get a soda as that may help. Hopefully I still have some!
I know its likely thinking how can she be writing this if she hurts so bad but it's almost therapeutic to write when I dont feel well and is a distractor - one I desperately need as I am admittedly a little worried. Even a few times ive when drinking or swallowing something swallowed it wrong (not to uncommon I think I couldnt go a day without swallowing something wrong) and that coughing along with so many other otherwise little things aggravates the bejeezus out of the muscles and spasms/pain. So not fun!
I'll update when I get home from the Appt.,
Erica
5/2/12
Yesterday Dr.Bragg ok'd turning down the shunt to the final low setting (.5) and so her NP came by again with the Medtronic rep and they proceeded to try to turn down the programmable device again. They dont know for sure but think that the setting may in fact have been at 1.0 over the weekend instread of the 2.0 they thought it may have reset to. That had something to do with the re-programmer they where using was new, and not very clear + an actual confirmation # doesnt flash up the device just stops at whichever # the person sets in. So anyways yesterday they turned it back to 1.0 thinking it had accidentally been turned to high 24 hrs before. Later on Dr.Bragg stopped by after she was done with her surgeries and we talked for a bit + I had been a little frustrated before they walked in trying to do sometihng on the computer and just with not being able to see clearly so she said they would instead of waiting till next week go ahead and turn the shunt down the final setting. That was done fairly easily this time. I still wanted to go home so they let me and had supper at my parents and now am back at my Apt. Sleep last night was surprisingly good minus waking once to go to the bathroom and this morning being so sore I literally could barely roll myself out of bed (I do have a high double mattressed bed so takes some effott getting in to but otherwise is soooo comfy) and reaching down to get anything or move normally just isnt happening yet., If possible I think the past couple days have been more sore than the previous 3 days after surgery! I fup with Dr.Bragg next thurs since I missed ERT this week and there isnt a nurse available to do it now (which is probably ok as id have to drive down to CHW) and it's easier to see Dr.Bragg on thurs then try to fit it in in Madison before or after ERT in milw on mondays. 9
I thought it was incredibly sweet of Dr.Bragg's NP we where talking about the past year and where my shunt care was before I started seeing them, the circuitous route to how I got to seeing Dr.Bragg and my underlying diagnosis + that plays in to it. She after we talked for awhile said something about how Dr.Bragg has this small handful of pts she really worries alot about and thinks alot about and that she (the NP) knew how much Dr.Bragg really cared, thought about my situation and wanted to help as best she could, in not giving up. I think that came up bc I had said something about how it is still scary sometimes even though I trust Dr.Bragg and her team that I cant help but worry when the issues are so on-going she will get frustrated and not be able to help and that I will become a patient who takes to much time already. I know its kind of irrational thoughts and I dont think about it very much anymore but I guess with my past neurosurgeon, the road blocks between him and seeing Dr.Bragg, the on-going shunt complications we've dealt with and the fact that I do get such great periods of feeling AWESOME + she (Dr.Bragg) truely is one of those very awesome providers that has added more than she could probably ever realize to my team and care. (answers, certainty, better communication, trust, etc) I guess it was nice to hear the NP say that they as a team really liked working with me, as a patient I dont require providers to like me or even tell me positive things but i think most people would agree when you spend so much time with a provider it is nice to know they dont think you are a pain and that they do care beyond just the 15mins you might see them in clinic. :)
5/1/12
I can say this has been one of those hospital stays and up and down emotional few days that really can take a toll on a persons psych. In reality it has been good it's just I think more that ive been here at UW so much over the past few months (and year), I feel like I know some of these nurses and staff better than I do some of my friends and its hard being somewhere that you have so little privacy or self-decision. By self-decision I really mean anything I take for granted at home isnt always easy-peasy here. The rooms are private so it's also not as if I have a roomate to deal with but sometimes
you still here every little noise and dont have the little self choices like when to take meds, when to eat, etc., etc. I dont mean to complain because I get along with the majority of the nurses on the floor very well and have gotten some that even request me when they see my name on the schedule I think its more you just get tired and feel like your doing the same thing over and over although atleast we make progress and isnt a stalled ship. :)
I had asked Dr.Bragg when she stopped by this afternoon about if having that 2nd VP shunt valve is affecting how much CSF is drained via the VP shunt. She said if it came to it we could think about removing that but she thought it was doing more benefit than harm as we originaly placed it to prevent the intermittent ventricle collapsing by increasing back pressures. She did say it's possible we could go to a less resistant LP shunt valve or even as a few cases she has had have done well with; not having a valve in the 2nd shunt at all to create a continous flow drain. With that she would still place a reservour though as she said we want to have easy access to testing the actual shunt function. Right now I dont think we have to worry about any of those things but as has been our case all along Dr.Bragg likes to have options and ideas ahead of time, I appreciate that as I am a information kind of patient and when I know something I can feel ok with it.
She also brought up that as she often says we've gotten more of these episodes of sheer good symptom relief especially with each of the external drains (VP and LP alike) and we would keep making changes till we got as good of relief of symptoms internally as we do externally. She didnt want me to get discouraged as she had options and we werent going to give up. Another quality I appreciate about her, very personable but also tenacious in seeking answers for her patients and yet she isnt careless about it, she reaches out to her former colleagues where she trained, to her current colleague and to the Pharma companies that manufacture these shunts to get input.
One other thing she told me after surger fri was with the LP shunt when she placed the distal-peritoneal catheter she used a different brand then the medtronic-strata and I cant remember if she said it was shorter or she cut it shorter but just said that a long distal valve increases resistance of CSF fluid flow in Hydrocepalus shunts. She made it shorter so that to would be less resistance for CSF to get past. I dont think she used a 'Y' connector to connect the 2 peritoneal catheters but I also know that isnt always done.
I had. had to be cathed by the nurse on Sat as I couldnt go on my own and also had to lay flat for the 24hrs but then when I could get up Sat night was fine. Turns out though as is so often the case I guess bc of the nerve-bladder issues I got another UTI with symptoms starting sun. This one is another of the drug resistant bacteria I was originally on Cipro and then switched to Levaquin antibiotic. This is the same antibiotic resistant bacreria I had a couple months ago and for which everyone has to do isolation measures at UW and yet all previous UA's between that last infection about 2 monrhs and 4 surgeries ago and now showed clear! Makes you wonder where that bacteria was lingering??? I have no doubt the tests where clear as they where done before each surgery as part of pre-op and then another time to double check it was cleared. Weird!
This is a article on programmable shunts (specifically Codman and Strata) and household magnets.:
http://ieeexplore.ieee.org/xpl/freeabs_all.jsp?reload=true&arnumber=1431907
All for now,
Erica
Swelling on monday
Lumbar incision
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