I've been particularly bad about writing here lately so will try to do a atleast semi update of a few things I've been up to. - I still con't to feel pretty good headache wise which is some kind of miracle given the LP Shunt surgery was the end of Sept and it's now late Nov and I still feel pretty good. A small CSF leak cont's to play a HUGE part in that but I am not complaining!!!
I have to admit I had not entirely understood this/why it makes such a difference in the past but a few wks back was talking to Dr.Bragg (my former Nrsgn, she cont's to stay in touch and involved in my care). Anyways she explained to me that with my skull thickness/non-compliant skull even small increases in pressure which most people are able to adapt to with my body (my skull) does not have the extra capacity (space) to expand nor can it expand due to stiffness and so even very small increases in spinal fluid (CSF) creates headaches, nausea and can lead to throwing up.
Interesting and completely made sense + I now get why Dr.Bragg advocated so hard I consider the cranial vault expansion (bone thinning of skull bone) albeit still sounds freakish to me and since it wouldn't be with her I'd be even more hesitant. Still interesting and good to understand it better though!
This went okay, certainly not a bad appt. He cont's to support my trying the Humira study (asked if I was still doing this, what was going on with it). I go out next mo to do actual enrollment and start the drug (whether actual Humira or placebo initially) but I had opted to put off the actual enrollment visit after the TIA/Mini-stroke I had about 2mo ago till next month. I am glad I waited honestly mostly b/c I ended up going to San Fran, CA to speak at Sangamo and then the week after that speaking trip I made the trip to AZ (for which I got to see Dr.Bragg) -> That trip seeing her alone was worth the exhausting nature of it though!
Anyways so Cardiology Appt we are leaving things the way they are. I have been fiddling with my Lasix dose, many days just doing 20mgs 1-2 times a day other than infusion days wheres before I was on 60mgs 2x a day except on the occasion I'd skip a dose.
I am having some intermittent breathing issues but this is intermittent and I go back up on the Lasix as I see fit. I HATE that med (oh heck I hate the Spironolactone to which is a longer acting version of the Lasix!)
Blood Thinner re-trial - PCP
We are going to trial re-starting the Coumadin which is a safer blood thinner than is the Lovenox injection I give myself 2x a day (safer only in the context it's easier to monitor levels) but while we tweak and monitor the dosing initially for a while i'll also have to stay on the Lovenox injections. Initially my Cardiologist wants lab work done every 4days after I start and expects we'll have to go up on the dosing (they'll start at 5mgs) but I am semi confident we'll have a little easier time compared to 13mo ago when we where dealing with shunt issues.
This said just have to pray the CSF leak cont's and the shunts keep doing their thing so we don't have to start the INR mess all over again! Dr.E said he would just go back to Lovenox alone again if we ended up having issues at any point as he doesn't want dosing to get as high as the level of Coumadin I was on just over a year ago. CRAZY STUFF!
As far as testing goes we are waiting to start the actual med till next Fri (day after Thanksgiving) so there are Providers around at Cardiology to monitor the blood levels and give feedback. I am ok with that as it gives a little time to get a few things squared away. My PCP has already put in a standing order at Dean for lab draws and i'll be able to get some of the lab draws while at my weekly infusion + she offered to make sure results get faxed to my Heart. Because of electronic med records i'll also leave a msg for Cardiology Nurses and they can access the results remotely via EMR. They in turn call back later the same day with if any changes in dosing are needed, when to test next, etc.
B/c this week wasn't busy enough I also had knee MRI and Neurosurgery f/up after (to have shunts re-programmed) Monday + Ortho Appt today. The Orthopedic dr. opted to do a knee injection (wasn't as bad as I've heard some people say they are). Hopefully this might finalllyyyy calm the irritation that's been going on since the end of Sept!?!?! I am hoping!
Will try to update some time soon. Attached are a few pics from when I was in AZ, including Dr.Bragg and I. Her daughter (she's about 6mo younger than Z) who took the pics. Was sooo nice to see Dr.Bragg and to see her daughter again!!!! So grateful she took the time to come pick me up and have supper + we had a funny candy store run. I don't remember why we went there but was pretty funny!. Couldn't ask for a nicer Neurosurgeon! I will always be grateful for her and certainly always miss her!!!
Thanks for stopping by,
Erica
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