Exhausting and a little hard.. Shunt stuff. Late Cardiology update

I apparently started writing a update a few wks ago and never finished (see below) so will just tack on to that.
It has been a bit rough of a few wks, not that the past few months have exactly been great but atleast when I had the Spinal Fluid (CSF) leak from my low back (LP) Shunt I had great headache control even though the low back pain/discomfort was pretty intsense any time I was on my feet. That CSF has resolved or healed itself unfortunately now for a few wks and so not only do I still have pretty bad back pain to leg (radiating) pain I now have some pretty freaking (not) awesome headaches that occur mainly at night and certain parts of the day (when pressure is highest). Has stunk really bad!
                         

                     
I have been talking to Dr.Bragg some, getting some advice from her (I miss her so bad, I literally am tearing up just writing this. I miss having a dr. that really listened and thought outside the box. A dr. who realizes my underlying MPS makes my Commun. Hydro just different in some ways than are 'typical' (whatever that is) cases of it. She never gave up and she'd try options like intermittently removing CSF to give relief while we figured things out. Did I say I miss her?

Non-the-less earlier this wk or last wk I emailed my Neurosurgeon (her former Partner) and asked if we could do a shunt tap. check the function of the 2 shunts. I don't know but I do know I feel crummy. Thankfully he responded and agreed we could check the shunts function and see if both are working right.  That is set for next wk. I wish it would be a simple answer! I literally have felt a little depressed some days just from feeling so crappy and frankly uncertainty in answers. I struggled when Dr.Bragg was here, trusting her enough but atleast I knew she wouldn't stop trying to help/figure things out.  Now is just hard.

From a few weeks ago... -  Heart Rhythm Appt
Follow up with Dr.Kovach (Heart Rhythm, CHW) was Thurs an went ok. We opted to add back a low dose (milder) beta blocker, see if this along with the Ivabradine can help calm some of the funny/off heart rhythms. Heart rate itself has averaged (on the past several heart monitors) 80s with some upward spikes in the 100s but overall rate itself is better following the heart ablation in Jan.

Re the beta blocker this was a  joint decision, between Dr.Kovach and myself to trial it. I appreciate my Heart drs. want or ask my input and don't just do something without a joint agreement! I have to admit I may not get this part right or entirely right as I didn't write down any notes and I didn't record the appt (when I do this I delete any recording after I write down any notes) but anyways he mentioned a few options we may have though he's not eager to do/try should we not be able to get these wonky heart rhythm issues to calm with meds. As anyone whose followed this blog knows we haven't exactly had the best of luck with heart meds! That said any further ablations which I genuinely think is unlikely (that we'd try again) but if we did the risk is greater still than the other 2 times. This time especially so b/c we've had a few short episodes of heart block (where the heart stops beating for a brief period or maybe it's that the beats come in a sporadic, inefficient pattern. I honestly can't remember).
   Non-the-less right now it's not on our 'being considered' and I get the feeling is pretty unlikely we'd try again unless things change or got worse.
                                              

Will try to update sooner, I genuinely like writing (is easier than talking about how I feel to people and I am glad this blog seems to help so many, who have said as much) but I just don't do it as much when I don't feel good. I guess b/c it's energy I don't really have.

If I sound depressed I promise I am not, just a little discouraged and a little sad and not sleeping to great (I still LOVE my recliner though!) doesn't help.
Thanks for stopping by,

Erica

(Cardiology, Neurosurgery, etc) Wonder when we'll figure it out..

Going to try to make this short - I know, stop laughing. =)

        

Cardiology I had the 48hr heart monitor which I mailed back the other day. Usually takes a wk or so to hear anything. I did have some symptoms during it and in general haven't been feeling all that great for the past few days or week or so so who knows. Between lightheaded episodes (but very odd), heart rate that's a little odd and the low-to-mid back stuff (irritation, radiating discomfort) topped now to with the CSF (Spinal fluid) leak in my low back from the LP Shunt seems like it's pretty much headed. That stinks a lot! Headaches still aren't as bad as they are sometimes, like when the shunts are completely not working but that leak definitely makes/made things much better!

Neurosurgery wise going off above, I seen my Neurosurgeon today at UW Children's and he is basically at a loss. I said to him the risks of doing more surgery with the LP Shunt may be real (and I know they are to an exent given the stenosis/narrowing and severe scarring) BUT that shunt location right now SUCKS! Now to the CSF leak from around that shunt being pretty well healed makes it all even worse.

I have thought a lot lately about this weird life I live, both normally and so abnormally abnormal. I watch or see people including really my own family, siblings especially going on about their lives, functioning normally, doing normal life things every day meanwhile most or many of my days are spent dealing with insurance stuff, endless medical stuff and all that goes with both of these. Shoot I even fully realize with having my Case Managers at Genzyme and at Dean I think I have it pretty decent compared to many. I think it's just the fact even with these 2 helping (and they do help a lot!) I still have to communicate with them, sort paperwork, deal with scheduling drs. appts., figuring out when f/ups are needed (today's Neurosurgery Appt? I have no idea in hindsight what the plan is other than Xray was done and he wanted to look at some prior surgery notes (for which I sorted through my binder of Neurosurgery Med records and sent this to him and to Dr.Bragg. So much easier keeping copies of all those notes! I called UW Med Records to have a copy of recent spine MRI and Xrays mailed to me which no big deal any 1 of those things but altogether it takes up a lot of time!
I talked to my Insur. Case Manager while still at the Neurosurgery Appt to sort prior auth for the Xrays done (PA is covered for a yr at a time but something was messed up today) and several other phone calls or messages before I'd ever gotten home.
Once I got home? More phone calls, emails, answering messages, editing a document for the interview/photoshoot I did a few wks ago (Levi and the guy he works with do a write up to go with the pics, I somehow messed up the changes I'd made so will have to re-do that in a couple days). This on top of a few 'more normal' things and the day has just been busy and kind of nuts but one of those days you wonder 'what did I do' even though I know I actually did a lot!
Anyways so I guess I've just been thinking a lot about life and trying to figure this LP Shunt irritation/symptoms out and in general pondering life and my life and maybe especially so b/c of watching people around me and how normal their lives seem (even though I realize there are so many whose lives are equal as out of the ordinary as is mine).

Happy 34th Bday I guess and hopefully a year that I in a way is a little less frustrating than this past yrs has been! Was definitely nor all bad and plenty of good sometimes just would be nice if it where a little easier at times! I know if it be God's will we will figure this shunt stuff out, the seeming heart (rhythm) issues and i'll con't to hold my faith, the best I can (failing often undoubtedly) that tomorrow and the next day and the day after that will bring answers and better days. For now I am just grateful to have all I do and even though I don't feel particularly awesome I know I am blessed by those around me whom I love, my Team of Providers and even Providers, like Dr.Bragg whom are no longer here but choose (so much gratitude on my part for her!) to stay a part of my Team and so willingly offer so much help.
 I am grateful for all around me who (to be perfectly honest) sometimes pick me up in a sense when I am frustrated, tired and at times feeling a bit at the end of my rope. I am grateful for all who offer advice and frankly optimism that I sometimes am just barely otherwise holding to (re finding answers).
 I know we've done this so, so many times but even if I felt uncertainty other times atleast I knew in my heart Dr.Bragg would help me figure something out. Now I don't feel that certainty and that stinks. I do think Dr.Iskandar is trying, much thanks to Dr.Bragg for that but I don't think he really gets what it's really like in the harder moments and it just seems or feels like she got it in a way that made even the uncertain, difficult times a bit easier to handle. This all said I'm not giving up, I can't but it does get hard!

Thank you for stopping by, sorry to vent, sometimes it just helps!


                          San Diego, Loma Point Beach (I think that's what it was called) - was beautiful!

 

Thanks for stopping by and no matter, ultimately I know my God knows the plans he has for me. For that I am grateful.

Erica