Tuesday, February 21, 2017

Cardiology update, Neurosurgery, WORLD Mtng



Cardiology -
Due to some on/off (but very intermittent and very short lived thankfully) lightheaded/dizzy symptoms that started only in the past few wks or so (though before we restarted the Ivabradine)
Dr.Earing, my Cardiologist is concerned could our having restarted the Ivabradine post this 2nd Sinus Node ablation back in Dec. be causing intermittent episodes with the heart and abnormal pauses.  This concern is because of short episode(s) (ie a short run heart of heart block) I guess they saw on a recent Heart monitor (Zio patch) episode(s) occurring and should I be on this now?
We'll decide I guess based off the Zio patchc(24-48hr continuous EKG, records heart rhythm though 1 done since then was clear.  On the other hand I restarted the Ivabradine before these symptoms started and to heart rate while not drastically slower seems like it's pleasantly different.  Maybe that's a mind game on my part, who knows but even while the lightheaded/dizzy episodes which occur for a few mins. at a time, very intermittently are occuring the skipped or extra beats seem like they are improved. Who knows!

Dr.Kovach (my Heart Rhythm dr.) responded to an email I sent him updating on this all and he thought perhaps if symptoms kept on he'd want a 30day Heart monitor to see about any episodes over a longer period. I don't f/up with him until I believe May so we'll watch to see how things play out.

The Echo done at this last episode  showed a very slight improvement in the Mitral valve gradient which not significant but it puts the new valve back in the mild range vs. being moderate stenosis so if that where to stick (stay improved) that wouldn't be a bad thing!

Peds Neurosurgery F/up - few wks ago -
I seen Dr.Iskandar a few wks ago  which wasn't particularly useful (not the right word but can't think of what word I'm looking for)  and honestly the Medical Assistant had called a few days prior to confirm the Appt and say something about I'd need to schedule an MRI after the Appt (I forgot to ask Dr.Iskandar about that but assume he changed his mind as he didn't mention anything re doing imaging before next fup). This MA said he was planning for a 3mo f/up after the Appt. LOL, To that I just thought to myself  'so why am I going to the Appt if he has a plan in mind?' Needless in fact not much came off the Appt., I'm tired of saying over and over what an impact this is having on day to day life so was pretty quiet needless at the Appt though I made sure to emphasize to him this insn't normal, this isn't even entirely what Dr.Bragg and I dealt with after her and I 1st surgery together (symptom mirror then some but not all that much anymore. Hard to explain the difference).
Something I did realize just the other day, though of course several days after the Appt. is that a few years back Dr.Bragg had moved the Lumbar Peritoneal Shunt to drain from the Thoracic (mid) spine versus where it was in the lumbar spine and at that time I had virtually the same symptoms I have no including radiating leg pain, hip and significant low back pain and started in just 1 leg but spread to encompassing both legs after some time though 1 leg at that time always remained worse than the other to as it is now.
The only way I realized this was an old blog post, written about this same issue a few yrs (from this very blog =D ) was it showed up in my facebook timehop (a daily thing that shows up with memories from that same day the past 5-6 years). Needless I asked Dr.Bragg about this and she to felt I should mention it to Dr.Iskandar as he from what I remember placed the LP Shunt so it starts in my low back but the tip ends up in my mid (thoracic) spine now to.

Gawd I hope he will listen!!!!! Hi Secretary when I had called to make the f/up Appt last wk made an Appt for 1mo from now not the 3mo Dr.Iskandar had recommended and she just said if by some chance things are improved (that would be AWESOME!) then I should just call her back and she'd reschedule. Hey, can we can hope but I appreciate she also is insightful!



WORLD Meeting - Injectable anti-inflammatory study.
Otherwise I was in San Diego last wk for the yearly WORLD Mtng., which is 1 of my favorites to attend and was good. A few studies either started or will be started including one looking at a arthritis (and several other indications) injectable drug which is being studied by an Endocrine dr. formerly of UofMn and now at Harbor UCLA in CA. She's helped my Endocrine dr. and I a few times and a genuinely nice doc.
Last summer or so they did a small study with this drug of which I had been asked if I would want to participate but there was a lot going on here with heart and shunt stuff so I chose not to. Things now are a tad smoother so I have already talked with this dr. more, sent her several test results they'll need when looking at if Pts (myself) qualify and b/c they just got a new round of funding (yay to the Foundation I work for!) she expects they may be up and starting again in May. She'll keep me updated which I appreciate (b/c I know these docs and doctors in general have a lot else to do besides just update interested Pts like myself!
This would require initial travel to CA at study start and then any addt;l travel if there is any I believe is limited to the end. I may not be remembering that completely correct but I know the weeks during after initial enrollment they mail the drug to Pts.

Otherwise I did a photoshoot with Levi of 'Living in the Light of Rare' Foundation, whom photograps Pts, tells their story and has displays of these pics and stories at various Pharma/Biotech mtngs. These are used to raise awareness but also to give Pts a voice. The photoshoot took us to the Bay area of San Diego (about 20-30 mins from our hotel), and various area around there incuding some cliffs (maybe not the right way to describe), Navy ship area and to lighthouse on the Bay. Was fun, exhausting and so well cool! Some of the pics attached either I or Levi took with my phone but he'll send me the ones he took when he has them set (edited maybe or downloaded, not sure). Either way was really rewarding! We had dinner afterwards and he humored me by going to a more basic food place (Cheesecake factory) vs a (I think it was but can't remember for sure) Mexican restaurant (I have nothing against this particular one just didn't seem to have any basic items.
The night before that I'd had dinner with the Foundation I work for and with the CEO and Study Coord. for another study that is on-going using the Aldurazyme (drug I receive every wk) reformulated to cross the BBB. Was informative and interesting as well as the 2 people where extremely down to earth to talk to!

Will keep things updated here on any given 1 of the above on-going issues or study,
Thanks for stopping by,

Erica

Monday, January 23, 2017

Shunt / Heart updates

 
Sorry for not update on recent Appts and frankly life (although I guess I don't often share much about my day to day-fairly boring (but good to me) life! Sometimes I feel like wrting but then I don't actually know what to write about or to be more apt (is that the right word?!) I know what's on my mind but to tired to really be able to put it in to words! That has been the case for sure the past few wks.
 
Cardiology  / Heart Rhythm
I guess i'll start with the Cardiology and Peds Neurosurgery Appts I had last wk. and see about the rest.
Cardiology was ok, nothing to much as we didn't do an Echo this time (repeat in June), the next heart monitor will be in June as well  with joint f/up Appt with both Dr.Kovach and Dr.Earing, basically to con't to monitor the newest valve (some (moderate) stenosis (narrowing) in the new valve but nothing that my Team seems to alarmed about. We'll also con't to monitor the post heart ablation rhythm and brief run of  heart block episode(s).
 Dr.Earing along (apparently) with Dr.Kovach decided to stop the Digoxin, this having something to do with the episode(s) of short heart block on the heart monitor and if I understand right Digoxin may have some or could have some affect on that area/potential issue? Non-the-less, although I'd love to
I wont complain about stopping it (I take numerous heart meds so one less is awesome!). =) Even with getting off the Ivabradine last month and the Digoxin now I still take numerous other meds for heart (Lisinopril, 2 different meds for fluid (Lasix, Spironolactone) to get fluid off/keep fluid off heart and lungs and baby aspirin +Lovenox injection (blood thinner).  At some point we'll likely re-add the Coumadin, go back to just doing Lovenox before surgeries/procedures.
  
Needless the 3rd Open Heart Surgery was a year ago, Jan 21. Seems hard to believe at times!
 
 
 
Spinal fluid / Shunts
Our biggest issue here is the lack of spinal fluid in my spinal canal due to the 2 shunts (1 in spinal canal, 1 in my brain), the lack of CSF b/c of these shunts and secondary (per my Nrsgn) severe Arachnoiditis (having to do with scarring I guess) which affects CSF flow and (I guess if I have it right) the spinal fluid (CSF) being less there is less of a cushion to the spine/spinal cord. This scar tissue in turn causes inflammation if I understand correctly which causes more scar tissue.
 
Lack of Spinal fluid within the Spinal canal due to the shunts and Spinal fluid leak (CSF leaking out due to CSF leak in low back) and aggravated by the severe scarring/narrowing (Arachnoiditis per Dr.Iskandar) could be the  cause of irritation to the nerves this causing radiating pain (and maybe cause of the severe low back pain when standing?).
Needless I still feel the valve and reservoir sitting on my low back (under the skin, located low back) is not helping irritation or inflammation at all.
It's always worst when I am on my feet and is minimal discomfort when I am sitting back either very straight posture (but then very difficult mid-shoulders, a radiating pain).
 
I could KICK myself for not sticking to our original agreement to put the valve and reservoir to sit on my side, along the LP Shunt again! I HATE this! And the leg/low back pain literally takes my breathe away quite often.
 
Non-the-less will try to update soon,
Thanks for stopping by,
 
Erica