Friday, June 1, 2012

Day to day to day.. Almost 5 weeks.

Sorry, this is another of my many (it seems?) recent multi-day updates. Will try to keep this part shorter.
I went and saw my Pain Mngmt dr yesterday whom I really like and is good at what she does, she is also who got me interested in advocacy with APF and so we have always had Pain outreach as a common interest to talk about and catch up on outside of actual care issues. Yesterday was definitely no different what with APF closing and so much cont'd turmoil in chronic pain mngmt. Anyways, as far as actual pain goes while in the hospital she gave me a few suggestions to give to my Neurosurgeon (Dr.Bragg) of which Dr.Bragg used/tried the suggestioins. Dr.B my PM dr suggested we make a Pain reccomendation plan for future surgeries or hospitalizations like this (bc as much as we might have wishful thinking that there will not be anymore there will be for some issue or another be it the shunt or something else.) On the docket for instance is carpal tunnel (a 3rd time)  whenever I decide to go back as I was scheduled to fup this past week but then with getting out of the hosptial and the holiday ERT got switched to Tues when the appt was supposed to be. So anyways Dr.B and I are going to meet again in 2 weeks and in the mean time she thought she would also print out what meds we have tried in the past with success or failure in the different med classes. The pain plan is something we did with the post-op/in-patient cervical spine decompression and my Ortho-spine dr liked it and used it then - obviously in that 3 years alot has changed so we will just update or change it overall. When I knew the adult pain coord at UW it worked fine her just making suggestions as she had gotten to know me through our combined interest in APF/pain outreach but since she has since moved to WA state and given we struggled some to figure out what to use while I was in the hospital this last time I think my drs idea is a good one. Ive also had this drs cell phone and home number since almost when I began seeing her (although other than the beginning and occassional text updates I cant say the last time we've talked to each other via phone) and she asked me for if there are future shunt surgeries to give her cell # to Dr.Bragg so she (Dr.Bragg) knows she can reach out and they both not feel uncertain about contacting each other since each is at different hospitals/academic centers as Dr.B said she felt a bit intimidated about just calling Dr.Bragg herself (Dr.B and I would email and I in turn would fwd it to Dr.Bragg and her team) as she didnt want to step on toes/decisions which I told her with Dr.Bragg I really could tell they appreciated Dr.B's advice and appreciated having it to try.  I think both things should help as both drs are realllyy very good and 2 of my best.

As far as changes to help the overall pain issues since the 2nd shunt placement (lumbar-thoracic to peritoneal)  surgery (which the pain is alot better since that week I was re-admitted but when it does flare up, Ugh!)  Dr.B is bumping up by a small bit the pain patch (butrans) and then adding a slightly incrementally bigger dose of lyrica which is a med that helps calms the nerve signals and one of the best that can be used for this issue. It's a med actually my former PCP put me on 3+ years ago and we've played around with the dose many times over surgeries. This time I am taking it morning and night and then I also take a immediate release pain med 3-4 times a day.

On a different note, Zander graduated 4K last night and given his noise intolerance I am SUPER proud of my kiddo - he is growing so big and will be 6 next week, 6! Which is crazy bc that on yet another differnt note means ive had my shunt (in general) for 6 years as Zander was not yet born when I first saw my then neurosurgeon and just botn when  it was first put in. That kiddo is my HERO! (for many reasons).

Last, to update below, yes today was somewhat better than the rest of the week has been, with the stomach binder although I dont understand it, it does make things a little more bearable and I was able to go and be on and off my feet fairly well most of the day. - Tues and Weds night where just bad nights so I was feeling a lot tired and a little depressed at the sitation when  I woke up and was writing that Thurs morning before I got up and going for the day. Thankfully the day got better and ive semi-figured out a better way to stay on top of the overall pain.

                                                          Zander's 4K Graduation -

As far as advocacy and work with the new foundation it is going really well and we cont to work on the database for MPS I attenuated families for future research - I like the work and is interested plus in the end also benefits me which is a nice perk. :)
See below for earleir updates but otherwise thanks for stopping by!
Well, this has definitely been hard, one of the hardest surgeries really overall as  I hurt alot and I dont feel great alot and I am frustrated by the nerve pain. I wake up in the morning and throughout the night dreading the day because I know how uncomfortable it will be alot of the day. That said not to minimize this all but I know I cant let it stop me from living a life so I have been marching on doing the things I do which means a family get-together on mon,. infusion on tues., and seeing my nephew and niece yesterday (they give me energy in some ways and I love just following Zander around as he talks about his bugs and butterflies and catching bugs, that kiddo is just to cute not to smile at and his sister is so like him it's very funny as already they compete. I often wonder how I could have gotten so lucky as an aunt to have these nephews and nieces and the time I get with them? I dont know and I know sometimes its a little over-whelming as I do have some of them alot but id rather it be that than not enough as it is with the older ones during the school year - I know next year when Zander is in school full time I am going to miss him like crazyyyyyy....

Anyways, so back to this healing, wow, just wow, ooh wow is about all I can say! I wake up alot at night and on a bad night like tues I sleep less than I do more as I am up so often trying to figure out how to get comfortable (wouldnt matter in some ways if I was laying on a bed of cotton molded to my body). Do I still think this was the right thing to do, with placing a second shunt? Yes, simply because with the external lumbar drain was so sweetly, serenely, amazingly good.. I just wonder why are the external drains be it ventricular or lumbar so good and yet we have such an incredibly hard time with these internal drains? Is it because with the external drains we control them and the flow? Is it because with internal drains it isnt being absorbed enough and thus isnt in turn flowing enough? I dont know but wish I did! Yesterday afternoon I called Dr.Bragg's office; her nurse isnt there on Weds so I talked to her partners nurse and just told her how miserable I am with this nerve pain in my mid-spine and how it affects nearly everything (including sittring here typing this which isnt awesome as my work and alot of what I do is computer based.)  :o/ and is so uncomfortable. In reality in some ways it reminds me of the first LP shunt so I wonder if it is less about nerve irritation in general and more about nerve irritation due to not enough CSF to cushion the spine, I dont really know. I wouldnt mind if I did know!   I fup with Dr.Bragg next week thurs in clinic as today I see my Pain mngmt dr (I am hoping the 2 of them maybe can think of something individually or together to help this as it heals..)  and the nurse offered a clinic appt today but bc the one med I get from my Pain dr is a patch every 7 days and have to fill it this weekened I kind of need to see her anyways + not much I figured Dr.Bragg could do in clinic. Her actual nurse is back today and going to call me though. I super hate calling them (or any dr) regardless of how nice they are simply bc I hate bothering people and I just talked to Lisa on tue (just to schedule the fup) and feel like (not bc they make me feel this way!) I am forever asking them for help with these dang shunt issues. I defintiely in many ways was not made for having health issues atleast as far as having to ask others for help.


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