This has been a really quite interesting (not really in a great way) couple wks with these headaches; I am not sure what to make of them but they are occurring off and on throughout the day in the same pressure pattern except there is also an almost migraine like component along w the intermittent pressure causing mild vision distortion.
The headaches when they occur while being widespread throughout my head also tends to be centered on my forehead (2 headaches in 1 really) which this in and of itself is similar (but milder) than the headache I got when the VP Shunt completely failed a few wks ago and as well same as other times when it failed. I don't by any means think the VP isn't working just that this is weird!
One thing I've been able to do to mildly break up the headache when it seems like it is going to get pretty bad (but I don't think it would get as bad as when the VPS completely failed) is depress the reservoir on the shunt - this is the little built in device Dr.Bragg uses when she taps the shunt or draws of CSF.
The one day I was not at home and was a little desperate to try and improve the symptoms as I needed to drive home from an Appt I was at and seemed like a relatively simple thing that shouldn't I wouldn't think affect the shunt since I only do it once each time the headaches get pretty bad.
Needless depressing the reservoir did help the headache and symptoms that time and other times since then atleast enough where I wasn't as nauseous and could focus and feel pretty human - human enough to do whatever I was in the middle of! I truly think there is something wrong w 1 of these shunts as this is not my 'normal' at all.
The headaches after I saw Dr.Bragg last Monday came back by Tues and have been the usual worse in the morning, worse at night, better but not perfect the longer I am up though as mentioned above they have been different than is my otherwise 'normal'. Symptoms feel a lot like my head is swimming actually.. I am trying to read a realllyyy good book but can only read a little bit at a time so I typically read, take a break, come back and read for a little while again. Thankfully talking to Dr.Bragg as hard as it is sometimes I have confidence she believes me and isn't giving up. Hopefully once she returns from her vacation (to FL ironically around the same time I will be in FL.) and I am back we can figure something out.
As much as I am looking fwd to the WORLD Mtng I admit I am a tad nervous as the meeting is at a different hotel than where I and the people I work for are staying at so it's not as if I could just go up to my room, take a nap and come back to a session if I wanted (not as easily) this time! Other than logistics being more difficult I think the overall meeting will be good.
I kind of wish I didn't have ERT on Monday as there is a satellite session by PTC Monday night on their drug Ataluran for MPS I and the studies for this that I would really like to have gone to! It is nice to always catch up in person w the varied MPS docs who I bounce questions off of throughout the year and we have a Lunch w Amicus (Therapeutics) on Thurs which I am really looking fwd to though.
MPS Awareness, Rare Disease Awareness, CHD Awareness
Infusion Site
The new infusion site at FMLH cont's to go well, the one thing that gets on my nerves but has nothing to do w the Nurses or Staff (who I really like) is they are required to do vitals ever 15mins (every time we initially ramp up) the 1st hour, though we initially ramp up over a 2hrs-every 30min. run. and then they still have to do them at minimum every 30mins-1hr over the 5.5-6hrs infusion time.
Definitely gets on my nerves! Thankfully the Nurses and Aids and Pharmacist really are nice, nice to talk to and humor me.
Overall I feel blessed with really great Nurses who genuinely seem to like me at this new Infusion site. - I admittedly am still always amazed when Nurses I've met once or twice make it a pt. to either get assigned to my care the next week or stop by to chat and check in on something we may have talked about the week before (an upcoming appt, symptoms or just b/c "I wanted to say 'hi'")! I love that the Nurses like me and that I still get to see my former infusion Nurses when doing INR at CHW.
Cardiology, INR
Nancy, the NP in Cardiology (ACHD Clinic, CHW) called with the INR (blood thinner result) Monday and I am always amazed how well she and Jane (Dr.E's Nurse) and Dr.E communicate, share news with each other. INR approx. 2 wks out from surgery cont'd to be low so they opted to up the Coumadin dose which will now be 6mgs 5days and 4mgs 2days with re-drawing labs before ERT in 2wks.
I guess what it comes down to is compared to my 'Team' of Providers when I first really started this post-MPS diagnosis vs now is like night and day, and as much as it gets tiring forever seemingly having something going on I genuinely don't mind working with these Providers. I dislike having to ask for help but even that if I have to do it I am glad it is with this group of Providers whom I trust!
I can't say I really get it (yet I do) but our having slowed the ERT Infusion rate to 5.5-6 hrs (this is ultimately what it has ended up being at each week now) has really helped the breathing issues. While it's not perfect it is better then it has been in awhile. Also cutting down on how much fluid I drink in a day significantly has helped.
This where I used to make it a point to drink as much water as possible now I try to drink as little as possible (figured this out almost by fluke chance) and the difference is oddly, weirdly good. Ironically it seems restricting fluid has affected feeling lightheaded/dizzy at times though at the same time I am unsure if this is due to cardiac or is it more of a shunt thing or perhaps related to both.
Fluid does seem to be re-accumulating in my pleural space so it is possible it is a pressure related issue more so than Cardio. Just another annoying issue to sort out.
Is it related? Pain Mngmt dr., Sciatic discomfort, TPL Shunt
On a shunt related note I've thought for a long time that the L leg ssciatic nerve type pain was somehow related to the Thoracic Pleural Shunt and last mont the days leading up to the VP Shunt having quit and then especially that day it quit make me really have no doubt it is related. Similarly when we fixed the VP Shunt in Nov. the symptoms improved and had mostly went away which is what led me to reallly think there was a relation.
I was talking to my Pain Mngmt dr who has felt there was likely some kind of tie in for some time about all of this today (I hadn't really thought to mention it to Dr.Bragg but will at the next Appt) and Dr.B feels where there is excess pressure placed in the spine and perhaps the catheter is expanding or if it is sitting near a nerve that is causing spine nerve irritation and the intermittent leg symptoms I experience.
Somewhat curiously I posted about this on fb and a friend of mine who also has 2 shunts and has had numerous issues (non-MPS, does not live in WI) mentioned she has read quite a bit about spine shunts for hydrocephalus and pts having issues w on-going leg irritation. Atleast I know I am not the only one then!
Thanks for stopping by,
Erica
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