Monday, August 24, 2015

I wonder what I wonder about shunt valves; Many appt f/up's next 2 wks.

I have been thinking about this on and off the past few days, not sure anyone would know but wondering if a valve (controls how much spinal fluid goes through) can be to small to function at it's actual intended '#'? Can it if to small affect how much CSF gets through?
Have been feeling pretty yuck the past however many days w nausea, little appetite and sleeping really bad. On average I'd wake up (no lie, wish it was!) 5-8 times a night, last night despite even taking a med specific for bladder I woke up 12 times. TWELVE freaking times having to go to the bathroom and then to add insult to fricken irritated it's not even like I really have to pee much! It's definitely not a UTI not UTI like symptoms.
This bladder irritation at night has been the case since the 1st spine surgery a little over 4yrs ago but has been particularly bad this time around.
For whatever reason the LP Shunt seems to realllyyyy irritate spine nerves that go to bladder? It's the only thing I can figure out? Being quite honest by last night after dealing w the severe stomach spasms and chills/sweating for several hours it made me want to scream. I am tired of feeling bitchy (short tempered ) from so little good sleep!
I had spent yesterday after Church with my Sister and Z in FDL which was fine, tiring but fun. Not sure I was the best company (?) but was fun. I got home late afternoon and I bet wasn't home 45mins (enough time to get wash going) and severe, really, really severe stomach spasms, fever and chills/sweating + aweful nausea started. Needless I finally took a 3 med combo (was trying just about anything) finally of Ativan (which I only ever use if symptoms are really, really bad), a bladder med and MSIR which finally helped calm that down.
I literally was curled up on the couch it hurt so bad. All I could think being perfectly honest (even though I know i shouldn't question God) was what have I done so wrong that I have to feel this bad and that we just can't get a better answer?
Am I that bad of a person that God is punishing me? I,know it's the devil playing w my mind but he was doing a really damn good job last night.
I am thinking Of asking my Primary Dr for a referral back to the Spine-nerve Urologist I saw once or twice at Dean, I really don't want to see another doctor but maybe see if she could help any way this bladder/waking up so much at night. I am miserable at night and hate it. I hate how crabby/short tempered this often makes me feel during the day about stupid things I'd otherwise just ignore mostly!
Thankfully I am doing PT right now bc the shunt seems to also cause muscle discomfort albeit only on the R side when I am walking. It's always something, something to make me feel crazy!
I have taken to depressing the shunt reservoir to try and get more CSF drained. Although this valve drains at a '5' and the Codman (30 setting) drained at approx 10mmhg I feel like this valve does a worse job. I felt good initially after surgery or atleast better but I am pretty sure that was due to CSF that drains off during surgery. I do think (maybe?) it drains a tad better but not as consistent?
Oddly enough I had similar in the past when I had the Medtronic Strata, given that drained relatively low to you'd have thought I'd have had good results with that to but I never did, always was that 'doesn't seem like it drains enough' symptoms to.
Just makes me wonder if smaller valves regardless of setting can only drain so much whereas a bigger valve can allow more CSF through? For patients such as myself who have high volume CSF would that affect it?
This valve is super tiny, I cant remember exactly what Dr.Bragg compared it to but something that was pretty small.. it's length is also a lot smaller I think though that I am not as positive of, just gauging from the feel of it (still a bit puffy).
In any case I see her next Thurs (after a bunch of other appt. shuffling/rescheduling) for surgery f/up. I am just hopeful she'll agree to placing the 2nd shunt back. I can hope, right?
I don't know why exactly but I feel more positive about this working than anything in a long while.. Maybe w/ 2 shunts, 1 programmable, such as the Codman Hakim and the LP Shunt as a fixed valve would finally be good or much closer to better? I feel like the Codman Hakim is the best valve we've tried relief wise.. I guess maybe I feel hopeful (if we can try the 2 shunt system) mostly b/c of knowing the LP Shunt drains so well and consistent compared to the former TPL Shunt and it just seems like we need just a bit more. I am sure praying! Not sure if that's selfish but I am!

I spent a good part of the approx. 6hrs at ERT (5 for actual infusion) scheduling, canceling and rescheduling, trying to coord. 5 different appts. in the next 2 wks. 3 of these are in Milw., 1 is in Madison and then local PT.
This week I see my Heart Rhythm dr., for 1 wk f/up post starting the Ivabradine. Next wk which has turned in to nothing but chaos due to so many appts ( ERT on Monday, Cardiologist on Tues (2mo f/up post the Heart Cath/Heart Rhythm study and starting the new med though we won't know actual potential benefits of it for 1-2mo. with the hope it can help buy us time to a 3rd OHS). These 2 appts are good timing I guess (as good as any appt is ever, who really wants to sit there no offense to ones drs. as mine are very nice) but given Dr.Bragg was wanting some info from them before she would potentially put back in the 2nd shunt IF that's what she decided to do it works out..
Weds is Botox w the Neurologist at Dean and Thurs is surgery f/up with Dr.Bragg. I didn't intend for so many appts to end up in 1 wk but have already rescheduled botox numerous times and ERT runs so long I can't coord Cardiology for after that. Heart Rhythm dr (same clinic as Cardiologist, CHW) I can't remember why that couldn't be coord. Not much ever seems to be able to be!
Basically a lot of it is 1. ERT runs basically all day. 2. It is probably a lot that most of these drs have clinics on different days and different cities for several of them. God grant me serenity is all I can say!?
Thanks for stopping by, stay tuned I guess.

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