Monday, December 31, 2018

Happy New Year!

𛰐Happy (almost) New Year! I am kind of glad we are almost at a new year, 2019 I sure pray is a little better than 2018 as far as getting answers to these headaches. I feel like 2018 was the year of patience (which is really hard when you really don't feel that great!).

Other than really frustrating medical stuff I can't say the year was all bad, I definitely had plenty of good to, even if sometimes just little things.  I was able to do the humira study in CA and finish that which has helped quite a bit with the spine-nerve (bladder, and leg) irritation issues.
 It's been nice having mostly better nights in that regard. There are still occasional nights I wake up a lot but from this issue but no where near what it was and not every night.
 I really like the Rheumatologist my PCP got on board for taking this drug over (post Dr.Polgreen's study) and while he is overseas on a mission trip I am now seeing 1 of his partners who also happens to be a dr I saw in HS so 1 more dr who knew me some pre-MPS dx that now knows that it is.
Once my Rheumatologist comes back i'll likely switch back to him but this new/old one is very nice to.

National Institutes of Health - Sangamo
I had the opportunity last winter/early spring to speak at the NIH (Nat'l Institute of Health) for Sangamo which was definetly one of the neatest speaking opportunities I've had (I've done a few for various Pharma/Biotech and a couple patient mtgs/Conf's).  - I have always been a bit fascinated with the NIH and was just neat to meet the Director and so many others there who make the place (which is HUGE!) run! Although I am not doing Sangamo's gene editing study I am glad I had the opportunities I did to speak at their headquarters a few mo's before this NIH gig and then to speak at the NIH with their CEO and a few other researchers.

New/old Infusion
My infusion center which was somewhat new at the start of last year (I think I'd been there about 4-6mo) has con't to go really well. I love my primary nurse and the back up and other nurses are very nice as well. Sure if I didn't have to go every week it would be oddly nice but since I do it's nice that a team I like. Also nice that my PCP is on-site (same bldng) if we ever needed her.
The work I do..
I con't to work for the same foundation (Gene Spotlight) and thankful every day for this. Yes, there are many reasons why I am grateful for getting to work for this foundation but above all the getting to attend mtngs and have a closer view in to what's going on for research for my disorder and for families with my disorder so I can hopefully con't to help other families is AWESOME!
 I try to never take this opportunity for granted as I absolutely love what I get to do and getting to help others while also being honest it helps me to (both knowing what's going on for research and studies but also what may be coming for possible treatments).
 It's been 6 yrs I think and I hope I get another 6+ years of the same!

So what do I hope (pray?!?) for 2019??
Honestly I pray 2019 brings finnnaalllyyyyy a fix for this shunts - a new shunt, a shunt revision... SOMETHING!!!! I don't know what else to say but that's what I wish and pray for.
I pray to 2019 con'ts to bring stability for the heart stuff, that the 1 heart valve stays stable and that I as a whole can sometimes just be a better communicator (just in regards to what I am feeling to my drs.).]
   I also hope the rest of my team whom I really like cont's to stay in their practices and no one moves. I dislike change and I really like the majority of my team. =) I also get my new glasses in the next few days (if they ever come in, I suppose due to the holidays but the arrival date keeps getting pushed back. Weds now maaybbeee). Still as slightly impatient as I feel (I know silly)  I'd say that looking fwd to seeing better is not to bad a way to send out the new year - being able to see better, even if the changes are from an issue that's ever so frustrating! Maybe silly but I like getting new glasses (I like mine but has been a few years). Sometimes it's just the small things and well being able to see easier will be nice!
        Tomorrow, NY Day, am picking up Zander and mtng some of my family and my other nephew + his Mom to go bowling. I bowl in the most crazy way (really hard to hold the ball a normal way to throw it) but should be fun!
I pray each of you reading this has a good 2019 as well! To God be the glory that we get another year. Having lost so many friends I try to never take each day for granted (I am not perfect at this).


Friday, November 30, 2018

UofMn Appt - Peds Neurosurgery

Weds I drove to Minneapolis, to the UofMn with a friend of mine to see the Peds Neurosurgeon there. I'd seen him a couple times before since he came to Mn and he's helped my team here.
Anyways honestly I am not all that sure what to think of the appt., I can't say I had high hopes (after awhile in this rare disease world you often learn to temper what you expect or atleast I have) but I did hope at minimum it would be an ok appt given when I saw him last summer he had ideas and really seemed to believe me.

I truly think (know) that my Neurosurgeon here has a big impact on the seeming change in opinion though. At the appt, the friend who was with me came in to the actual appt (I don't normally do this b/c drives me NUTS how Drs then frequently talk to the parent/other person but I made sure they all knew Connie was a friend and simply there b/c we made the long-ish drive together. They still needed to talk to me).
In this regard I give kudos to Dr.G he and I talked and he included Connie but he never tried to get her opinions on stuff she'd have no idea about nor did he try to influence the few times she just chimed in and corrected things he was saying. THAT I appreciated! Not always the case with all drs.

So anyways I actually am not sure how best to sum up the appt but I just emphasized the various on-going symptoms, how some things are getting worse. How it appears the LP Shunt isn't working right from the Shunt taps done some weeks or a month or more ago and that my other drs have tried to help (be it my Pain Mngmt dr or my Physical Therapist or others on my team in ways they can).
When I brought up the LP Shunt tap issue Dr.G asked (not direct quote) 'So did I think I really needed that shunt? And commented about how even if I feel best at very low pressures its very hard to get ICP (brain pressures) that low with a shunt (yah, I know..)

That was almost like he was now trying to say maybe  I didn't need 2 shunts (again I am VERY sure this has to do with my local Nrsgn) and said (again not a direct quote) 'well maybe your headaches are just tension headaches?'..  This to, I shared how I get the mini migraine like headaches (he asked about that then) which I then had to explain they aren't truly migraines but my vision gets affected and I can't sleep laying down and how pressures (headaches) are worse at night and in the morning + slowly improve after I am up.
I made sure he knew about the Neuro Opthalm. last year and how those visual field studies where really off before a shunt revision I had and then improved after + my Eye dr was concerned enough she called my Nrsgn to let him know she really felt this was shunt/pressure related. Equally so after the shunt was revised the same test results where improved and this same dr reached back out to my Neurosurgeon to make sure he knew this. I see that Eye dr in  a few wks and as much as I hate those visual field studies (oh man they stink!) I am curious how they will be.

Re options b/c Dr.G seems very uncertain now he is willing to do ICP monitoring (damn I hate how fricken that's always the back up plan, basically a way to try and prove me wrong I suppose). He is going to reach out to my former Nrsgn and my current one and see what the progress is on that implanted intracranial pressure monitoring device is (this to so then another few mo's living with these symptoms. I seriously want to roll my eyes!) Otherwise he is willing to do ICP monitoring again after emphasizing this isn't risk free (requires  a small surgery though I do know Dr.Bragg placed one years ago while I was completely awake..) and I'd be blinded during it (cause you know as a patient I'm going to sit there the whole time and watch my brain pressure #'s. Everytime some Nrsgns think that/say that I seriously just about LOL, I am not a very exciting person but even if a hospital I can find better things to entertain myself that watching a freaking monitor to try and psyche myself out. But hey whatever floats some drs boats, the irony though for real just makes me roll my eyes how stupid it is - basically implying they think we are perhaps crazy (sometimes I'm surprised I'm not by this point!!!) for what symptoms we feel. <-- Insert rolling eyes here.

Anyways so that's what I know for now. Wait and see, wait and see... Amazes me how a dr can believe you and then b/c another dr talks to them to share their very jaded view things are completely different. I will just say I said more than once at this appt not only do I as a patient have far better things to do than (basically) waste mine and their time but as unexciting as I am I can think of about a 100 things I'd rather do than sit in a drs office asking for help or for that matter sit in a hospital knowing it's less than clear to your dr(s) you really need to believe you..
Stay tuned I guess. Will update when I know something.
Thanks for stopping by,


PS: As a side note, I just want to say it may be I don't talk about the rest of my team a lot but as frustrating as things are with this shunt stuff  I absolutely am grateful to my Primary Dr (she is amazing, and really tries to help where she can and never seems afraid to reach out to others on my team if she feels it's needed). The rest of my team is also good and as frustrated as what I write sometimes here or on fb it isn't about my whole team.  I am truly grateful for the ones who believe me or try to figure things out to help.
Even this MN dr., I don't really blame him. He's influenced by my Nrsgn but atleast he's trying to help. So while I feel a bit exasperated I am still grateful