So what a day filled with ALOT of information, not earth shattering information but non-the-less alot of information to think about and store away or remember! In my PMD's case she writes down her thoughts/plan/suggestions at the end of Appts on the after visit summary and with my Peds Neurosurgeon I write myself notes as I walk out to my car.
I guess i'll just start at the beginning with the various things each Provider and I talked about!?
Dr.Bragg, who I might add is so sweet, while I of course am human and doubt her (as with anyone) at times she continually proves she cares and is always trying to think of better options.
I know or think in the back of her mind she still weights the potential for the cranial vault expansion but I think she must 1. sense my hesistation and 2. want to try to avoid it if we can or for as long as we can by considering other options?
She talked to her Codman Rep and although I am not sure if it is actually a Codman valve
Dr.Bragg mentioned there is a new valve she may consider next time we have a valve occlusion issue (not if but when, I thought that was kind of funny) that she said is closer to the Strata programmable valves we first started with "and I know we didnt have very good luck with" but this valve has something different about it and she feels might be a good option to try. One downfall she mentioned was it has less setting options than my current Codman Hakin valve(s) which she seemed to have a bit of concern about but then at the same time we do really seem to only use the bottom 3-4 settings on my VP Shunt so who knows? I am open to trying it if/when we need to down the road if she feels it's worth a shot. Worst that happens I guess is we go back to what I have now. She commented in that conversation she cont's to ask her Codman Rep to keep an eye out for something similar to what we have now but better. =) I think it's sweet she seems to think about our issue a fair amount.
I thought that conversation was pretty funny given at the appt this afternoon my Primary dr was asking about and talking about the VPS surgery and the Pleural space fluid amongst other related things and she un-related to Dr.Bragg's comment said to me (along the lines): "I remember the 1st time I saw you for a shunt surgery pre-op, saying to you something like "well this should get you to feeling better again for a longtime and you kind of smiled, nodded and didnt say alot." She then commented along the lines "I now know your normal is to need on-going shunt revisions and for you it isn't unusual". LOL!? =)
Glad atleast she doesnt question my symptoms or sometimes lack of appearance of symptoms (given the time of day I most often see her) and that she goes with the flow and has been amazing at marshalling my other Providers regarding what information is needed for shunt surgeries (ie Coumadin and med adjustments per Cardiology, Stress dose Cortisol per Endocrine, etc). I like her and she's very good at what she does!
She's good at stepping in when she feels something needs to be done but not afraid to give the reigns to another of my Specialists if she feels they can or should handle the situation (whatever it may be). Most of all she's personable and she herself likes (especally) my Cardiologist and Neurosurgeon (her words today) which is good since she works with them some on my care.
With Dr.Bragg's Appt this morning we where talking about the Pleural Space fluid (hot topic these days) and she similar to what she had messaged me the other night commented along the lines "it's interesting how we seem to have another way to know when your VPS may not be working right and that the TPL Shunt causes such irritation" (meaning when it's the sole functioning shunt). I didn't think to ask and wish I would have but why the TPL Shunt would suddenly start causing such irritation to the pleural space and thus the cough and other on-going symptoms? Likewise I didnt think to ask if she thought the residual cough might eventually go away completely?
I think from what my Primary dr has said from the 2 of them (Dr.Bragg, Dr.Simpson) having talked there seems to be consensus that it is partially due to the cardiac issues
but I wish I would have thought to ask for their thoughts on this more!
Regarding the INR issues with this past surgery we've formulated a new plan; instead of
waiting to test the morning of surgery or just testing the level the day before but then cancelling any surgery if it where to high she suggested I test at her clinic-lab (or if already in Milw test there but make sure she gets the result) and if INR where to high she could relatively easily prescribe a dose of Vit. K to bring the level to range for a surgery the next day.
We'll try this in Jan. with the scheduled (out-pt) Hand surgery. I'm not sure if Dr.Bragg will follow a similar suite in any of her future potential surgeries when/if I am admitted the morning of surgery but I would imagine she may.
On my part it seems I also screwed up the Coumadin dosing for this last surgery, I had thought I was supposed to stop it 3 days prior to surgery (so that Monday for Thurs's surgery) but in fact I should have taken the last dose that Sunday and then skipped doses M-W for Thurs's surgery. I'm not sure the level would still have been in-range but it may have been. Atleast on my part good to know what I in fact should be doing for the future!
Because Sciatic nerve symptoms in my L leg left have been pretty bad again (standing for as little as a minute or 2 in one place is aweful and I am frequently waking up at night) she suggested I ask my Pain Mngmt dr about a possible oral high dose Steroid burst to see if this might help bring inflammation down. Several months ago we had been considering doing some kind of invasive injections in the area Dr.Bragg suspects (but isnt completely certain) may be the cause. Dr.Simpson thinks if we try a high dose steroid similar to what I take before surgeries/procedures or when sick (self injection)
but with a different med it could potentially help the symptoms. This would be ideal to prevent anything invasive and thus potential for introduction for infection in areas around the TPL Shunt. My PM dr is a Anesthesiologist by training (amongst several other board certifications) so she'll have knowledge of this. Dr.Simpson was/is willing to prescribe it she just didnt want to "step on any toes". I can appreciate that.
Because there seems always to be many things going on she's watching the fluid around the pleural space (but like Dr.Bragg very happy it has reduced and like Dr.Bragg thinks it's interesting how the 2 shunts seem to play off each other ie when both work symptoms improved some. Pulmonary will con't to monitor that and we all hope nothing invasive is needed as far as pulling off fluid (to test or just to remove fluid)!
We pretty much covered every area from head to toe and talked about stomach spasms i've been getting again which is something in the past (atleast this particular type/symptom)
i'd only gotten when I had some type of infection. I am not to worried about it as what's one more issue (right?) as long as I can get it to go away within a few hrs each time (is kind of gut wrenching, feels like your abdomen or stomach is being twisted in sporadic lasting knots that slowly subside each time). She asked that I keep her updated on this ie if it doesnt go away in a few weeks or gets worse; her concern is is there an infection somewhere albeit like w the pleural space cough/fluid I don't show symptoms of anything and CSF was clear from this last surgery (Dr.Bragg released her labs on her systems mychart). I think perhaps Dr.Simpson's bigger concern is with any infection/cold I rarely have fevers (probably due to abnormal autonomic issues) but even so I don't think she's to terribly concerned for now.
Dr.Bragg just said regarding f/up (after we hugged and celebrated my not seeing her over Christmas either right before, during or after for the 1st time in the 3 yrs i've been seeing her!) that she'd be around for the most part should I need anything. Hopefully I won't! It's sweet she cared enough to share what she thought her schedule might be.
Dr.Simpson pretty much said the same, keep her updated on various symptoms and if nothing else we'd talk the day before the Hand surgery.
A week from today I should be in FL at this time! And a week after that is Christmas which is what I am really most excited for; I love seeing my nephews and nieces faces!
Thanks for stopping by,
Don't forget to appreciate those people in your life whoever they may be who help in big and small ways!
God Bless,
Erica
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