Peds Neurosurgery -
It's been a busy few wks and yet a not all that productive (on one hand) few wks. Between still trying to get my Nrsgn to reconsider the LP (Lumbar, low back) Shunt and the incessant but intermittent irritation that's been causing since last Jan (you know time... great how it's worked so well to make this feel even an ounce better (note sarcasm, I am not being serious) ) though I've come to the conclusion and my Primary dr. from having talked to her about this several times seems to feel pretty similar. She feels our best bet is to get a 2nd opinion elsewhere though our issue is we don't exactly have a wide (or even small) pile to pick from re Neurosurgeons who deal with complex cases. So frustrating!!!
I've reached out to 1 Nrsgn in my MPS Community (though I know he's a good Nrsgn I'm not very hopeful he'll have any suggestions, from what I know from other MPS Parents he's pretty conservative to. =/
We need drs in our MPS Community who aren't afraid to think outside their typical and yet Neurosurgery wise there just aren't any. - I keep in touch with Dr.Bragg (former Peds Nrsgn till she moved last yr) and I think she's tried to help repeatedly from afar (by talking to my Nrsgn now re her and I had this exact experience and what finally helped it) but doesn't seem much luck there either. Stinks being perfectly honest going from someone like her who was willing to try even if we didn't always get perfect but she trieeedd. As a complex Patient that to us Pts means a lot when our drs just try!
1 of the docs in my MPS Community is going to try to help so we'll see. I appreciate his help atleast! I can't even say how much I wish we could figure this LP Shunt out and move it! I regret all the freaking time ever having agreed to the position of how the shunt and valve/reservoir are.
MPS I - Humira, Dr.Polgreen (Study)
On a separate note, I'd been talking to this dr for some time, helping reach out to families in my MPS I Community to let families know Dr.Polgreens study would soon be recruiting again, the details, etc. I heard from Dr.Polgreen the other day again and she had just received the new IRB approval (IRB has to do with a study site approving the logistics of a study basically) plus is now enrolling individuals. Her and I are talking tmrw (Fri) re the study, details, etc. The downfall is it would require 3-4 trips to CA (Los Angeles) in a 52wk period but the rest of the study whether 1 is placebo or 1 is actual drug (Humira) would be done from home.
I can't say on this for sure, although I have read the study protocol, requirements, etc but I believe those who start on actual Humira (vs placebo) will do injections every other wk. Then those who are randomized to placebo would receive the actual drug I want to say 1/2 way through the study.
It looks like the clinicaltrials.gov study site hasn't been updated yet but for any MPS I Pts or Families interested I can send you more info if you like or contact Dr.Polgreen.
https://clinicaltrials.gov/ct2/show/NCT03153319?term=Humira%2C+MPS+I&rank=1
The 1st initial phase (2 Patient I believe, this is the one I'd been asked if I was interested but at the time we where dealing with Heart surgery or Ablation yet) article is below.
https://www.ncbi.nlm.nih.gov/pubmed/28119823
Audiology
I heard from my Audiologist (Hearing dr) re the Hearing aids and coverage was as we suspected.
We knew the 1 hearing aid bc of the hearing test changes a month or so ago would be covered by my primary insurance but that the 2nd would fall just outside their parameters. After my Audiologist turned in/submitting the various paperwork we now have approval for the 1 side (which was the more urgent to get through given my insur. changes July 1 and my new primary insur. if I am accepted to stay under my Dad's new policy does not cover hearing aids. Re the 2nd Hearing Aid she was turning in the forms to my secondary insur. for coverage and hoped to have that by the time I see her for the 1st side (1.5wks from now, other dates she had didn't work for my schedule).
I did actually have hearing aid(s) some yrs ago but then hearing had improved (yay!) for a few yrs (which was awesome!) till now. My hearing issues as it is fall in what's called SSNRI (Sensorineural hearing loss, hearing at the higher levels) so in quiet situations I can hear pretty fine.
http://www.resound.com/en-US/hearing-aids
Unity, Insurance switch (from Dean Health Plan)
Re the new Insurance change, I've been working with Unity some and the paperwork I need to complete has been mailed late last wk, just waiting for it to get here! Thankfully I have secondary insur so if it came down to it my Genzyme Case Manager (they help with Insur aspects of the enzyme replacement IV Infusion drug I receive every wk given Aldurazyme is so expensive and given weekly for a Patients lifetime).
Anyways so I've been getting a little info from my Case Manager at Dean re what Amy (Genzyme CM) and I should or can do re the insur change and my current infusion site. I am REALLLYYY going to miss having the CM I do! I don't care what anyone says, having a Case Manager when you get a good one makes ALOT of things a bit easier! Especially given my primary insur. has been an HMO the past 3 or 4 or so yrs my CM has worked wonders with helping get many of my out of network Providers covered as 'out of network exceptions' so they where covered.
My CM (Marge) and I are going to try to meet in a couple wks at my Infusion site which is relatively closer to where the Dean Health Plan is (she'll come down to my infusion site) which will be kind of cool
. It's always a bit funny how much time as a Patient I spend talking to some people and yet if I where to pass them on the street, by site I'd have no idea who they where! =)
Picture from earlier in the week. My Infusion site is now in the same bldng as my Primary dr (Internal Med, actually her office ironically is in the same clinic space where I used to see my Peds Cardiologist yrs ago - I seriously LOL'd the 1st time I went there to meet her/see her and realized this!) =)
Anyways she has stopped by infusion a few times and this time I'd asked if we could take a pic (I am a total picture person, I like having pictures of all the experiences and people I meet or work with when possible). =)
PCP (Internal Med) and I
Thanks for catching up,
Erica
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