Tuesday, December 16, 2014

3mo Echo, Cardiology Appt., Sunday School pics

Today's Cardiology Appt went ok, mitral valve remains stable at the high moderate leaking and stenosis but he'd prefer (and I am certainly ok with!) we con't to wait to intervene as long as possible. I think if I remember correctly he said the mitral valve remains stable from the increase in stenosis and leaking last Febr. (high moderate) and I think he said the atrium is enlarged and he felt that was due to blood returning (abnormally) backward from the mitral valve causing stress/pressure. He showed a diagram how the TPL Shunt fluid can be affected by the heart valve issues/enlargement (or maybe it was vice versa but I don't think so) and explained how he felt they all tied in to each other.
As far as the fluid in the lung space from the TPL Shunt he to feels as my PMD and Nrsgn do that it is multi-factorial. Unlike last appt though he seems to have changed his mind about the heart issues affecting the shunts and the shunts affecting the heart issues (was never rocket science to me given the hydrocephalus/pressure affects autonomic system and that controls things like heart rate, BP and breathing).
One thing I don't necessarily agree with him on though is he feels our cont'd issues with high heart rate are somewhat related to the shunt issues which I do not think is the case. I personally feel like regardless of when we get the shunts in atleast a reasonably good place my Heart rate remains high but then again it isnt as if we ever get complete headache resolution with the shunts. So I guess who knows?
He did make a comment regarding the shunt c' cardiac issues that 'I understand this better than I used to' (see above comments) which I am glad he admitted that and appreciated his saying as much. I've just always felt how couldnt a brain issue affect cardiac and vice versa? I also reaaallllllyyyyy appreciate that he, my PMD and Dr.Bragg work together (despite all 3 being at 3 different health systems) and try to go to each other coord. my care/questions vs when 1 may not know something trying to just wing it!
I am not sure who they see (but perhaps Dr.Bragg as I know his Nurse at one pt had asked if I thought she would see another pt of theirs and many of my Providers think very highly of her (given they know the extreme struggles I had prior to her to find a Nrsgn that would listen to me and believe me), but he commented with 2 other pts of his who also have shunts he's witnessed and is what changed his mind that when the 1 pt atleast had an EVD (external shunt) she had headache resolution and her heart rate was back within normal range. When she has had shunt issues but no EVD her heart rate to is high regardless of meds. Funny enough (perhaps only to me!) he like Dr.Bragg commented that it would be ideal for our heart issues if I could have an permanent EVD (I had commented how Dr.Bragg and I used to talk frequently about how much better I felt with EVDs compared to shunts) - I can't remember exactly what he said but something similar to what Dr.Bragg has said numerous times about how w EVDs the settings can be continously adjusted. I have a feeling they must work together with other pts and that she has (if they do) taught him a thing or two, which if that is the case I say AWESOME!
He still feels the many cardiac meds I take are needed regardless of what is causing teh high heart rate/strain on heart (multifactorial) but is partially it seems what influenced his change of opinion. I thought this was interesting given some months ago Dr.Bragg felt that there was a connection between the mitral valve having worsened and our on-going issues with headaches.
I am glad the cough isn't a big concern to my Cardiologist and while it's not the end of the world to me I DO have to say i'd gladly give it up. By the end of the day my chest and mid-back ache something fierce from coughing. This is saying something given the cough IS even improved from pre-this last VP Shunt surgery!
I don't particularly think my Cardiologist likes the fluid being there but I also don't think he was overly concerned although I also don't think it's occured to him prior to 2mo ago if there where periods where there was pleural effusions (fluid in lung space) I didnt have symptoms with it nor did I ever have this cough except after the 2nd OHS (which wasnt related to shunt). He was talking about Dr.Bragg (I can't remember exactly what but somehting to do with the heart stuff and the shunt stuff) and commented how he'd read he latest clinic note and I commented she seemed happy the fluid was reduced and that we both thought it was just another sign of the shunts complimenting each other. I've not read her note yet but he made the comment he wouldnt call what she wrote "happy" with the improvement but more "relieved" (I think that was his choice of words).
Either way we know it's an imperfect situation but better than it was and I HOPE the fluid will eventually (sooner than later preferably) resolve on it's own or perhaps just not build up as much so these secondary symptoms could improve? I realize given the TPL Shunt does drain to the lung space there will likely always be some fluid but that doesn't mean the related symptom are normal!

I've been thinking about some things since Weds' Neurosurgery and PMD Appt., perhaps more out of curiousity for the future but would raising the TPL Shunt a bit higher (I think the setting is around 50, lowest it can go is 30) and lowering the VPS setting a notch (though Dr.Bragg wasnt sure offhand what the setting was ie is it still set at it's lowest, pre-surgery '30' or is it at '40' the 2nd lowest setting.. Non-the-less the reason i've been thinking and wondering about this is the cough is very perstent as the day goes on and so while it's for sure improved since since the VP Shunt revision it is also still a problem. I don't know if we have room to adjust the VP Shunt down so we could maybe adjust the TPL Shunt up but this cough is fierce by the end of the day (pre-surgery it felt like an atomic bomb going off everytime i'd cough by the end of the day, now it just feels like a grenade (the force and thus discomfort I guess) by the end of the day as my mid-back and chest are ridiculously uncomfortable. The cough is just semi-consistent all throughout the day occuring more and more frequently as the day wears on. Pre-VPS surgery it seemed to just occur consistently at a much fiercer degree (again thats saying somthing given it now!)
My other thing i've been wondering about is will the fluid (CSF) eventually go away on it's own and thus the cough clear up? That may be a question more for my Pulmonologist (Lung dr.) when I see her the end of the month. Not urgent, more just curious questions for down the road and the fluid/cough question b/c well by the end of the day my chest is pretty darn uncomfortable.

My Pain Mngmt dr. semi-agreed (didnt disagree just felt my Primary dr could prescribe it) that a oral steroid burst may help the seeming sciatic nerve symptoms - Dr.Simpson in turn did just that and called in SoluMedrol dose pack which i'll start this wk.
Dr.Bratanow did talk about potential steroid injections and still does not feel this is a good way to go as her concern is scar tissue and the TPL Shunt (both potental for introducing infection and she is concerned the sciatic nerve symptoms are in some way related to the TPL Shunt irritating a nerve or related to both shunts though she isnt sure how this would be. She'd like to order a ultrasound to look at soft tissue in lumbar spine as she is also concerned there could be something similar causing this like occured with the nerves that where adhesed together prior to my 1st surgery with Dr.Bragg. I don't know, I just know for whatever reason these sciatic seeming symptoms where not as aweful when the VP Shunt wasnt working well and although the cough/lung fluid improved w the VPS revision the Sciatic nerve symptoms amped up big time. Literally I can be standing in place for as little as 1-2 mins and the symptoms begin and only get worse there out.
Last but not least - I am off to Florida to Disney (MPS) Conf. tomorrow, a little worried how tired i'll be but I should also have plenty of down time and I have all afternoon (I get in around 2 Weds) and night to do my own thing and most of Thurs as well. Instead of going to a Park Sat. afternoon i am most likely giving my Park ticket to a friend but not completely certain on that yet. I just think it would be to hard and uncomfortable to stand in long lines on back issues (which sucks a little actually!). Non-the-less should be a good Conf. =)

On a totally different note albeit i've had about a MILLION people ask me about the cough and if I was ok i've also had family and friends who know me well and who commented they thought this was the best i've looked in a long time s far as the headaches goes! =)
Attached is a couple pics from this past Sundays Sunday School Christmas party (I did a lesson the 1st 40mins of class).
Thanks for stopping by, will update on change in ERT (Infusion) clinic (=/) next update,
'SS Kids and their gift bags; an ornament and photo album (pics from this past semesters class activities)

'The meaning of the Candy Cane' craft - (very neat)

Our Christmas baking (part of it, I just decorate, lol)

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