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

Tuesday, November 27, 2018

Headed to UofMn - Peds Neurosurgery Appt.

I head to UofMn (Minneapolis) Weds to see the Peds Neurosurgeon again (last saw Dr.G last summer when there for the neurocognitive study for my MPS I, I had tacked on the addition appt with him before I flew home).

Anyways I had emailed Dr.G a couple weeks ago sort of updating him on what has been going on and lack of progress despite what suggestions he had given my local team. He suggested I come and see him again if I could and "we'd discuss options". There where appts available sooner but I had other stuff going on and tomorrow worked best for my schedule. It also worked out that a friend of mine was able to take off work so she and I are driving up there together (often otherwise my Dad and I would drive there together minus the times I fly to Mn).
I honestly don't know what to expect or hope from the appt but I guess perhaps just hoping he will still be willing to help and either by some miracle be able to convince my local Peds Nrsgn to do something (not holding my breathe sadly) or that he (Dr.G) will perhaps still consider some of the options he had thought might help when I saw him last summer.
If you believe in prayer then please pray for a good appt and us to be able to figure something out. I super do not want to drive to Minneapolis but also so want to feel better! God knows his plans, right?

Hope everyone's thanksgivings where well and blessed. Although I did not feel very great it was a nice day with family - not to much stress and drama if any usually starts after. I had my nephew the night before and for lunch + several of my other nieces and nephews where here so was pretty good overall.
Sunday School we are starting our holiday lessons and I've been getting ready for our SS Christmas party (I love our SS kids and getting to share the joy of Christmas and Christ's birth with them and honestly learn from them to!). These kids literally make my week which I feel lucky lucky for! Getting up so early on Sunday's is not high on my favorites list but at the same time I know when I see my 1st kid(s) come through the door Sunday mornings it's so truly rewarding!!!

Thanks for stopping by, will try to update later this wk.
God bless - to him be the glory!


Monday, November 5, 2018

Long over due update

Honestly I don't even know what I've all not updated on as it's been almost 2mo since I've updated here but I just could never quite get myself to sit down and type out an update.

I'll try to keep this short and just the basics..

I guess the main things are the shunt stuff is still going on, we know now the 1 shunt (LP Shunt) likely isn't working like it should from a shunt tap that was done some wks ago so that likely explains my headaches and every increasing symptoms (which have been kind of aweful). - My Nrsgn doesn't want to fix this though till he gets some device he's been trying to get approved past the FDA or Pharma approval and that's been moonnnttthhhssss + even after he would get approved it then would be 6mo more of it being implanted apparently that he would be collecting intracranial pressures remotely BEFORE he'd consider revising my shunt or doing something else. All I can say is what the frick?!?!? It has been so frustrating. -
I don't remember if I updated about that or not but I saw the UofMn Nrsgn a few months ago and he had given a few suggestions for things he thought might help the situation but those of course where discounted and never considered. I still can't quite figure out why my Nrsgn wanted other drs opinons if he never actually was going to consider what they thought? I wish this where an easier answer and weren't so hard to find a different dr. - It's not even that my Nrsgn is a bad Nrsgn, clearly he's good at what he does but for my case he is adamant against learning about my underlying disorder and actually helping. =/

Otherwise just the day to day - holidays are creeping up or I guess really are in full swing since Halloween is over and thanksgiving in a few wks. I can't quite get in to the swing yet but have been planning for Sunday School for our Christmas activities and that part I really love as well as when Z (my nephew) comes next since he LOVES Christmas trees will let him put mine up and decorate some. I honestly could do without the extra clutter but it is kinda pretty when it's all said and done decorating. =D)

The humira study I was in finished up a few months ago and I have stayed on that drug, every other wk (usual dosing for humira). We have the Lasix heart med at a stable dose now and that seems relatively ok along w/the other heart meds.
I go back for the x3 mo botox injections later this wk which helps muscle over activity (dystonia/spasticity)  and although I could do without the actual injections I am looking fwd the help those give! I'll start PT again in the new year and between not doing that and we had tried a lower dose of botox this last time my back muscles have been less than great. I actually look fwd to those injections which is CrAzY!

Will try to update sometime sooner this next time although really it's just been a lot of mundane, same ole same and mostly trying to not lose my mind (kind of kidding but at same time is frustrating) with the shunt stuff.
Thanks for stopping by,