When I had seen the Metabolic Genetics dr the other week at Boston Children's one of the things they where interested in was if Dr.Bragg might be willing to test CSF for GAG levels. I received the clinic portion of Dr.Bodamer/Dr.Berry's notes in the Patient Portal today and fwd'd those to several of my drs including Dr.Bragg.
While Dr.Bragg was tapping the VP Shunt and slowly letting CSF (fluid) drain off she was asking me if anything had been changed/added since that appt a few wks ago so I brought up to her about Dr.Bodamer wondering if she might be willing to test fluid for them. Dr.Bragg said she was more than fine sending them a CSF sample from one of these next times she taps the VP Shunt to drain off fluid.
I'll have to get instructions for her how she would go about sending a sample, I know Dr.Bodamer had said something about he could send her the supplies and instructions if she where willing. I think it is really nice she is so open to working with other of my drs. and she is so interested in what other drs. might add to my care or might be thinking!
After the tap was done and as we where talking about the symptom relief (for whatever reason even though the headache relief is relatively short lived these periodic/repeat taps to remove fluid seem to be causing the Spine/L leg nerve to stay calm for longer periods of time, each time after we've done a tap. That is AWESOME on my part!
She said she was thinking about why this might be as she was draining fluid and figures the symptom relief may be better w the shunt taps similar to how I get better relief with the External drains b/c there is no resistance when she is draining fluid vs with shuns the pressures have to reach a certain '#' (pressure) before the shunts will drain so I get continuous intermittent symptoms throughout the day due to my brain compliance issues and the build, drain, collapse, build, drain, collapse.
I honestly thought she might say we shouldn't do anymore taps for a while given I am not traveling anywhere now after this wknd BUT she asked me as where done if I wanted to come back next wk to do another.. Crap, I know your likely thinking 'why would you want to go back and see your Nrsgn again and have a needle put in your head?' The simple answer is I never want to go to an Appt BUT the relief is so, so worth it and especially with the Leg/nerve symptoms seeming to calm down for a little bit longer of periods after each!
I know she totally doesn't have to keep doing these and she even jokingly said something along the lines of 'I know some would say I am crazy for continually doing the shunt taps but I know your getting relief and you feel better and that is a good enough reason to me to keep doing them for you'. Have I said she is amazing?
If you know Nrsgns you know she is not your average Brain doc both in personality and in how she approaches caring for her pts! I am so, so grateful for her and will always be! I may doubt at times but that doesn't mean I'm not grateful both to her and for her for her persistence and as she has even commented about several times over the last wk, for her believing me when many other Surgeons didn't b/c my situation and presentation is not classic.
She never gives away details but she was using as a comparison another little pt. of hers whose had some on-going complications for which she was able to figure out today and she commented something like 'I know he was in a lot of pain to but you'd have never known it and his case reminded me several times of you and of your high pain tolerance as you deal with a lot of issues and pain but most would never know it looking at you'. (totally not how she put it but something like that, having to do with high pain tolerance and just dealing with these headaches everyday which would take many people down and make them complain I guess but I just march on)?
I am not sure entirely but I appreciate actually that she said that, that she seems to think I deal with the pain/discomfort fairly well as honestly I don't always feel like I deal with it all that well albeit I know I rarely complain.. I guess maybe I tend to feel like if I dealt w it really well I wouldn't ask her for her help maybe?
One thing I thought of while driving home from Madison and while thinking about some of the stuff Dr.Bragg and I had talked about (I love conversation with her, while I rarely think of questions related to what we talk about at the Appts I feel like I always learn something and come away w just a little more information)..
Anyways so Dr.Bragg was talking about the resistance issue w the shunts and like I said above why the shunt taps give better relief albeit short term than the shunts in general do and she believes it is b/c of the resistance from the shunts. Soo on my drive home I couldn't help but think about all this and I wonder can there ever be a shunt system that doesn't have a valve in it? Ie could we revise one of the shunts potentially to have no valve and it just be free flowing?
I am not sure if it would be even quicker to clog/collapse but I'm definitely going to ask her about it!?! Can't hurt to ask, right? We know after all 1 of the shunts will clog, it always does is just a matter of we never know when or if it will be a sudden full occlusion or as seems to be now intermittent partial occlusion that leads to partial permanent occlusion and either way requiring revision when symptoms are bad enough.
We talked about how MPS high pressure/Hydrocephalus issues are not really the typical Hydrocephalus issues, our pressure needs typically change over time (ie I started out w a medium pressure valve on a single shunt being good and now have 2 shunts set pretty low and ideally could use to drain more fluid).
Her feelings are the overly thickened skull/bone and compliance issues are a big part of what causes our on-going issues w the MPS and pressure and for some of us with shunts but also why symptoms don't always present classically. I know I've talked about that before but it's something we always come back to and for good reason!
Appt wise right now, I am gone this wknd, Dr.Bragg is gone Monday-Weds for a meeting she is presenting at (baclofen pumps and spasticity, I actually bet it would be an interesting topic to listen to her present on) and so I will see her Thurs. as is scheduled now.
When I scheduled this although I was looking right at my calendar (I am rather dense sometimes) I scheduled it for late morning but I have a Genzyme Lysosomal Mtng Thurs night also in Madison. I called back a couple hrs. later and left a message for her Secretary to see if I might be able to switch the appt. date to the following Monday. If I am able to do this i'll switch ERT (infusion) to Tues or Weds that wk.
Anyways, thanks for stopping by, thanks for the various emails and comments on my last blog. =)
Will update again next wk sometime,
Erica
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