It's been a year (for the 2nd shunt)... adjusted the setting..

Have to start this by saying that I realized last night it has been just over a year since the 2nd shunt was placed after we did a 5 day lumbar external drain the week before (in addition to the VP shunt which was in place) + Dr.Bragg had let me go home for about a week to let the external drain incisions heal, her thought was we could probably lower the risk of infection if we didnt place the 2nd shunt in the same admission, immediately after or during the external drain removal. Anyways, just over a year ago is when we did that 2nd shunt placement, after I think it was a 3-4 day in-pt trial of the lumbar EVD and after about a week (5 days I think) of then being in-patient from the LP shunt placement. By the next day or 1 1/2 days later could barely move the nerves in my low back and hip where so overly irritated I was in agonizing pain, I was doubling and tripling up on pain meds at home in addition to ice/heat and nothing was helping. I called the Neuro-Resident on call that night who told me I could either come in through the ER or see Dr.Bragg in clinic the next morning, I opted (semi-stupidly bc of
how badly I felt, would have been better off I guess going in through the ER bc once I was then admitted to the floor from clinic I had to wait for Residents to put in Dr.Bragg's order's which took the nurses hounding them over and over for several hours + finally calling Dr.Bragg who got it done.) Becausae I had opted to wait and have my Dad take me to her clinic the next morning which minus having to wait bc the Resident had never passed on the message to Dr.Bragg and she was in surgery or something she saw me as soon as she was going to get to her clinic. From her clinic I was re-admitted back to the floor, a PCA pain pump started, the Pain dept consulted and she talked to a colleague of her's + I then spent the next month in-patient as we adjusted the shunt settings, tried to the let the overly-irritated lumbar area heal (the lumbar catheter had been tunneled alot further than otherwise is usually done and was sitting up in my thoracic spine which may also have played a part if I am remembering right) and we did various different med treatments that she, her colleagues and my Pain Mngmt dr considered some of which worked well and some which where there own (mostly adverse nightime) issues. Definitely glad it is now vs a year ago!
                           X-ray of the VP shunt (Codman programmable) valve

Today I saw Dr.Bragg's NP to have the VP shunt turned down in the hopes this will dampen the headaches (pressure), vision issues (ugh!!!!!), and on/off other issues that have been occuring the past few days increasing though ironically today wasnt to bad of a day after I got past this morning. Sue and I had a bit of trouble w the Codman valve adjuster as it is a bit tricky to get it at the right setting and sometimes takes a few tries though Dr.Bragg (and I had forgotten she does this) showed Sue a more fail-proof way to prevent the setting from not going correctly which worked well the 2nd time we tried adjusting the valve after the 1st Xray. I went in w the valve at 50 and am now at 40 with the lowest it could go is down to 30 though bc we almost always have occluded once we went down as low as we could turn the shunts I doubt we would go that low. I hope this works and I really wish we could figure something out, I realllyyy like feeling even semi-human when the shunts are working "pretty-well" though "really-well" would be completely awesome, though I guess keep dreaming, right!? Someday, maybe! I got the appt changed to next Thurs to get my lenses on my glasses strenghtened (again) which hopefully this shunt adjustment will help vision to but I do think the shunts have had such an impact on vision that the lenses just need to be stronger (which i've posted about this before I think but
the Optometrist had said he thought they needed to be stronger but did'nt think I would wear the glasses if he made them as strong as the reading says they should be. Whatever the case may be I need to do something!

That's about it, I left the fup appt for mid-June but Dr.Bragg in an email earler this week had asked me to let her know how this went/keep her updated so if it goes ok will keep the appt then (though may change it back a week due to another appt in Milw) or otherwise her Secretary and Nurse are both really easy to get ahold of/easy to work with which is nice atleast bc I feel like I am forever talking to them!
Thanks for stopping by,

Erica