Friday, April 7, 2017

Neurosurgery (Shunt taps, clear but not clear result), ERT (Infusion) Changes

     This wk has just been a huge barrel of fun (or b.s, maybe a huge barrel of b.s?)

Peds Neurosurgery / Shunt:
This Appt was no less frustrating then any of the past ones with this Nrsgn have been. On one hand he says himself he has no experience with my MPS and thus the different way it presents Hydrocephalus in my case but then he treats it just like he'd treat any other complex Hydrocephalus Pt. SOOO FRUSTRATING!!!!
The shunt taps done on both shunts at Thurs's Appt showed the VPL Shunt they where only able to get around 2cc's I believe the NP said and she wasn't able to pull anything off the LP Shunt other than there was flashback in the needle (nothing able to be taken off).
I ran this by Dr.Bragg and she raised the concern a shunt revision likely needs to be done. But yes lets confuse the picture even more by repeating ICP Monitoring which won't be clear (b/c my pressure issues even in complete shunt failure aren't normal "high pressures" but is to much for me. And with atleast partial shunt function I completely don't get what the aim of this testing is... If he doesn't fix something after I do not know what I am going to do. I really keep questioning if I should try to get a 2nd opinion from his Partner (the guy that replaced Dr.Bragg at UW-AFCH basically).
This testing is set for a few wks., from now and between this and the infusion stuff I'm not sure which issue is frustrating me more!

ERT Infusion:
I don't even know what to say!?!?! This wk has been so freaking frustrating/stressful/irritating! Not only is my primary insurer trying to switch the infusion I get every wk to a site that has ZERO experience with my MPS I and enzyme infusions in general but these are the same sites that not 3 yrs ago said they could not do it because they didn't have the capacity (experience I guess)?!?!
I am fighting this all the way, I've been working with my Genzyme Case Manager and talking to my Case Manager at my insurer who unfortunately is in the middle as she then acts as my and my Teams voice what our concerns are.
Multiple Providers have told me they do not feel this site, which has no experience should be doing the infusion and my Cardiologist raised the concern they will not have a Geneticist on site. FMLH also has been able to adjust my infusion rates and volume around the cardiac issues b/c they have experience with enzyme replacement infusions in general.
1 of my Providers (whom I love) commented along the line 'they'll only do the infusion if they feel comfortable' which does not make me feel comfortable b/c I do NOT want there to be issues when we have not had any with infusion in years!

Will update sometime soon. Sorry it's been awhile in-between updates lately. I do tend to write a lot less often when I am not feeling great which I am not.


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