New Neurosurgeon -
Dr.Simpson asked about the new (apparently now at UW) Peds Neurosurgeon and if I planned to (request) to meet him which I said to her I didn't really know how to go about this? I worry I'd be burning bridges if I asked to meet the new Nrsgn (Dr.Ahmed) given Dr.Iskandar seems like he's planning to keep my case? Honestly I would just like to the meet the other guy, see his personality. What I REALLY want out of a Nrsgn again is someone that picks up the phone and talks to (especially) my Cardiology Team and who doesn't kind of give the pretense they are super familiar with my disorder when I know they are not.. Or who I tell them something that's well known fact in the MPS Commnunity, that Dr.Bragg, the Nrsgn that referred me to her and drs in our Community all know but then the dr. goes against that in their own notes? I realize this may sound bad to say it like that it's just what any of us in a rare disease communing with a issue that's not all that common to our rare disorder want/wish for.. And when you had a Provider that was pretty phenomenal at communication well it's hard to not want that again1?!?
She (Dr.Simpson), suggested I ask to make an Appt with the new Nrsgn and just gauge his personality, get to know him a little, see if we get along well (does he take an interest in my case). Per a former Patient of Dr.Bragg's (the Mom's little girl was the Patient) appts are starting to be scheduled with the new guy so I am hoping i'll meet him when in-pt for the shunt surgery? I feel weird about this whole situation as it was originally intended I'd go to the new guy once he got here but then shunt issues sort of got in the way.
Shoot I even could work with Dr.Iskandar if he'd work with the rest of my Team and I felt a bit more like it was a partnership.. I do appreciate atleast that he's worked with Dr.Bragg (even if I sense it drives him a little crazy I'd kept in touch with her, not sure). I don't know? I just want a Neurosurgeon again that it's a full partnership... Not one where they say 1 thing to me and another in notes/etc..
So I'm just not entirely sure yet!?!
Cardiology - Surgery (meds, blood thinners)
Cardiology - Lovenox (Enoxaperin technically) right now the plan is Dr.Simpson is talking to Cardiology to find out if they want this injection both the night before and the morning of or to skip the morning of. Given a mitral valve now technically I guess it's recommended the injection be given even the morning of procedures but she's going to find out and let me know and send the recommendations to Neurosurgery. This to... totally something Dr.Bragg would have double checked herself.. I guess it was just the comfort that she wanted to know herself? It's not at all I don't trust my Team b/c I do just knowing everyone communicated was HUGE.
Other meds i'll skip the morning dose of Lasix but take the longer acting Spironolactone to keep fluid off/prevent fluid overload. Per Cardiology and my PCP will do the same as I'd do with Dr.Bragg w surgeries and stop the Baby Aspirin 5 days prior to surgery.
I'll admit it bothers me a little but given the on-going heart issues and Dr.Iskandar being new to my Team/new to MPS that he hasn't said anything about reaching out to my Cardiology Team.
I know this was a huge reason my Cardiologist liked working with Dr.Bragg (she frequently worked with them, asked their opinion or just kept them up to date on what she intended to do/did they have any concern from heart stand pt.
She didn't always talk to them but if there was a new med or issue she'd reach out and confirm. As any one in our MPS Community knows having docs that do this is HUGE. Dr.Earing appreciated this as well, I think he just likes to know his Patients Providers are keeping the whole picture in mind and Team player?
Kind of on a side note, I was thinking about this earlier but I fully realize several of my Providers read this blog (not a bad thing I guess, perhaps unnerving bc this is where I go where I feel like I can share what I am feeling about some things but still good I guess for Providers to see inside their Patients worlds outside just a medical appt... Even if I primarily only write about medical stuff here I guess is still another perspective on a Patients life?.. But that said sometimes I am really honest about my frustrations, worries or fears here in ways I don't share elsewhere. I guess read at ones own discretion (if that's the right word to use, not sure)? ... I'm probably never going to stop writing here what I feel b/c this in a way is my sanity (writing).
Elmiron, Anti Inflammatory:
Dr.Simpson and I talked about this med and possible use, about what it does (it is now believed there is an inflammatory component to MPS I, which makes sense really bc many of us w MPS I are originally mis-diagnosed with some form or multiple forms of arthritis and muscle related disorders). She is going to reach out to my Genetics dr. in Boston re dosing as he (Dr.Bodamer) and my Cardiologist (Dr.Earing) have been talking about starting the med for about a yr now to see if it could help some of my issues.
Elmiron crosses the BBB (gets to the brain) and has been shown if I remember right to affect GAG storage which is what we do not break down with MPS I due to the missing/deficient enzyme. Perhaps this could help our Hydrocehaplus/shunt and heart issues some. It does have mild blood thinning properties so that part would have to be sorted given we already have issues stabilizing INR (currently just doing Lovenox (Enoxaperin) injections vs oral Coumadin for this very reason to provide a stable low blood thinning threshold. We'll see. I LOVE that Dr.Simpson is AWESOME about talking to and working w any of my Providers to sort any given issue out!
Otherwise I had 3mo botox today, which at the last Appt we had added an area more central so do shoulders, neck and mid/mid-low back area and while that newer area isn't particularly comfortable getting injected it all works so well! I really do need to go back to PT sooner than later to help overall leg/hip and the muscles that control posture but the botox does work well!
Hydro Association (1 day) Conf. - Phoenix, AZ
Lastly I both know an MPS Family that goes to the hospital Dr.Bragg is now at (they are seeing her next wk) and a few months ago met on fb another shunt Mom who was moving to AZ (not an MPS Family) and I follow the PCH/Barrow fb page (actually kind of an interesting page, they do a good job updating and interesting Hydro pieces here and there). Anyways it turns out PCH is collaborating with the Hydrocephalus Assoc to host a 1 day Hydro Conf.
I'm not yet sure if i'll go or not but the Foundation I work for has offered to send me if I do chose to. This is in Oct so not the greatest timing what with Sunday School starts back up in a few wks (Sun after Labor Day), the shunt surgery is the 6th (not a huge recovery) but then we're also doing the Heart Ablation procedure in-pt at CHW again so likely another Sun. I'd miss of SS topped by there's another Sun. in late Sept. i'll miss.
This all said other than is EXHAUSTING traveling (but maybe i'll be in the (atleast from shunt aspect) feeling better mode so that would help? Would be fun to see friends out there and Dr.Bragg's new hospital. I'll likely decide sometime mid-Sept so we'll see?
In any case, thanks for stopping by,