Sunday, August 2, 2015

F/up Dr.Bragg; we have a plan (opting to revise shunt, try a different valve)

Thurs I saw Dr.Bragg, which was a f/up planned for after I had the Cardiac Cath and EP (Heart Rhythm) Study.
She did thankfully tap the shunt to take off some fluid which is always a relief, albeit temporary but a relief no-less! It definitely made for much better sleep Thurs night which was good (waking up maybe 3 times instead 4-5-6 times) and a early morning with Z much easier! Symptoms where back by Fri but still made Fri so much easier; I really can't explain it but is almost like a reset to my body of sorts.
She did bring up about should we talk about and go ahead with making a plan for changing out this current shunt valve, given she knew I havent been feeling good headache wise. She made the comment something like (my words) 'we really dont know if this will work, if your body will be able to tolerate this either (given the extreme nerve irritation last time) but there are other options if it wouldnt and 'we've made bigger leaps of faith than this'. <-- This is why I like her, she is persistent, she doesnt give up and she looks at my big picture while wanting to make my quality of life better.

My Dad asked me the other night if I thought she would ever come back to thinking a 2nd shunt would be better again? (I can't tell you how often I get that question or similar from my Nurses, friends, a few of my other Providers) I really don't know the answer to that but con't to hope if this shunt valve didn't work (say it also causes the extreme nerve irritation for instance or isn't enough CSF drainage on it's own, maybe we would try a different approach?
Given this new valve will be a set valve, we won't have options to adjust the setting like we do with my current valve, maybe Dr.Bragg would come up with another valve that drains really well in my lumbar spine.. The current valve we have we have many settings to chose from but it isnt go low enough. The valve doesnt drain enough CSF (the fluid that builds up and causes my headaches/symptoms) so her (and my!) hope is this .5 valve will allow better and more CSF to drain without causing the extreme nerve irritation the 0 pressure valve we tried back in May did..

We do know the shunt draining in my lumbar spine definitely drains better than when the shunt was in my thoracic spine.. I con't to hope, either this just works or if not, not that I really would want a 2nd shunt again (I don't, seriously except I think the former 2 shunts complimented each other better even if imperfectly..
We know that when there where the 2 shunts and when both where working the VP Shunt gave us some drainage and at times the 2 shunts when they initially worked was really well. I am hopeful either this valve we're trying next (.5 mininav) will be ok or perhaps we can try that down the road.. I sincerely just hope this could/would work.
I often wonder given when we 1st placed the 2nd shunt I also had symptoms from the residual shunt infection that past Dec. (but we didnt realize thats what it was) and symptoms didnt really creep back up for another month or so, eventually getting worse and worse till we caught the infection later on by accident would we have had good results w that then LP Shunt and the then VP Shunt?
During that whole time after the 2nd shunt was placed I was sick on and off for months (hard to explain symptoms but it was terrible) and then when we found the infection we took out the shunts, placed the EVD and once cleared put in the TPL Shunt along w VP Shunt. The TPL Shunt never seemed to work as well as LP Shunts have for me. I've often wondered more than a few times if we had 2 shunts back now but in LP and VP would it be alot closer to better/for longer? I wish we could find out!

Dr.Bragg did make the comment Thurs (which she has made at times in the past to, perhaps as a reassurance to me which if that is the case I am grateful she does) that if this doesnt work she wasnt giving up and she sees this as a work in progress, we'll con't working at it and we'll get it figured out even if slowly as we've made some progress (very true). I am grateful for her. For her not giving up and for trying to help me, especially when I know she rarely sees me truly feeling bad.
I will just say it again, I am just grateful to her =)

EP Study F/up
This Thurs is the follow up appt with Dr.Kovach in clinic. I know he and Jake, my Pharmacist (or the Pharmacist that owns CHW'S Skywalk Pharmacy) are working on the Prior Auth approvals for the Ivabradine in hopes they can get it approved prior to Thurs's appt.
I have a few ques's for Dr.K but at the same time he has been amazing about answering questions all along!
I think i'll be able to just start the med without the original admit Dr.K thought would be needed which would be great! I am very hopeful the med will help and will help us hold off on needing to do the 3rd OHS for a longer while!
Other Appts
Otherwise I see Endocrine this wk, normal f/up. She is who manages the stress dose steroids both daily, the self injections and especially coordinating with my Providers when there are surgeries/procedures such as the Cardiac Cath/EP Study 1.5wks ago and the upcoming shunt revision.
Next wk we (my Parents, Sister, her kids, myself and my other nephew) are headed up to Green Bay area to Bay Beach, the amusement park which we do every summer, both when we where kids and now since Quinn (13) was a toddler. Tues I have our 2nd Sunday School planning mtng for the upcoming school yr.

Anyways will update sometime later this wk probably both about the surgery date if I know it, I am hoping either Dr.Bragg's Team calls tomorrow or i'll try calling them to try and schedule it. I'll also update the EP Study Appt., likely in the same post.
Thanks for stopping by,

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