Sorry for not updating after Monday's Appt with Dr.Bragg's former Partner - I will admit (and most knew/could have guessed) I was beyond nervous and not sure what to expect given (really) he's so different than is Dr.Bragg.
I truly think her (Dr.Bragg) having talked to him on my behalf helped as the Appt seemed to go well - we talked for almost (I think) 2.5hrs w/short interim breaks as he'd answer calls or see a Patient or two while the NPs tapped both shunts (we could get fluid off, he wonders if instead perhaps there's a small obstruction somewhere in the VP Shunt given (especially I guess) ventricle size has increased (actually really unusual in my case, even when 1st shunted my ventricle size never changed - which isn't uncommon in MPS Pts. - a newer finding from talking some MPS Parents it appears vent size once shunted some yrs will begin to change subtly (no one really knows why, Hydrocephalus isn't exactly a well studied - if even at all studied issue in the MPS world).
None-the-less as I mentioned above Dr.Iskandar seemed concerned given my symptoms (intermittent throwing up, nausea, pressure worse at night and morning till I am up for awhile/shunts begin to drain better, vision changes especially) could there be a small obstruction in 1 of the shunts (VP I think he thought but can't remember for sure that's affecting shunt function.
He suggested we try re-programming both shunts to a much higher setting (higher setting = drains less) and then immediately after re-program them back down see if there was a chance that could help clear a blockage if there was one. Was definitely worth a shot (to try) albeit no symptom change.
He also suggested we may end up doing a shunt exploration surgery to see if he could find a problem - there to I have to be honest and admit (but assume) he'd start with the VP Shunt. Not sure.
We're sorting it all..
I had completely forgotten about it (really it was I was thinking the Conf was a few wks out yet) when I was seeing and talking to him the other day but the Conf I am supposed to go to next wk for MPS for the Foundation I work for is next wk in Columbus (OH) so I asked Dr.Bragg what she thought I should do or suggestion. - Granted there are a lot of symptoms going on and no I don't always feel great BUT I've always tried reallllyyyy hard to not let my MPS stop me from doing the things I want/enjoy.
She always worked with me to try and allow me to keep living even if we where dealing with issues and would frequently tap either of my shunts to take fluid off and give temporary relief if I where going to be traveling. It helps with the flights to wherever I was always going and although Dr.Iskandar is definitely more conservative than is Dr.Bragg she suggested I ask him if he might be willing to allow this. She thought to this would be a good way for him to see the good benefit/relief I get from these.
I talked to Anna the Peds Neurosurgery Secretary this morning who in turn happened to see Dr.Iskandar shortly after and he actually thought it was a good idea (I don't actually enjoy having needles stuck in my head but the temporary relief is AMAZING!!!! - Ah I am Grateful!!!) -
- Anna also said Dr.Iskandar had apparently called Dr.Bragg this morning to talk to her about what's going on and get her opinion or insights (yay to their really working together, again AWESOME!),
I truly think Dr.Bragg has so much knowledge she can help us with of my case/situation! So that larger volume shunt tap is set for Tues morning (I have a Hand Appt that day anyways so while my hair will be gross (is somewhat hideable due to my dark and thick hair atleast) so the 2 are coordinated albeit different parts of Madison (not to far apart though) just different medical centers.
I fly out to Columbus Weds morning. We'll make final or better decision on what to do longer term/manage this issue once Tues's tap is done. I am ok with this plan. Just grateful he is thinking outside the box and working w/Dr.Bragg!
Otherwise heart rates had trended back up to low 100s within a few hours of last wks Heart Cath/Ablation though the hope I think was this would perhaps trend back down on it's own. If anything heart rates have gotten higher (110-120s seems average, I try to track them for my Team on an app on my phone, which the Cardiology NP and I had cross checked with their machine a few months back).
Given heart rates are up I called Dr.Kovach's ofc this morning to ask his Nurses if he would consider re-starting the Ivabradine sooner. I see him in Aug. so we'll see. He seemed both skeptical but thought maybe (?) if we restarted the Ivabradine again it might work like it did pre-Jan's 3rd OHS so either way we'll likely try it again, see if helps heart rate before we'd jump to doing another more intensive ablation.
Will update when or if there's anything really to update.
Thanks for coming by, <3
Erica
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