"The goal is to find a setting that provides a tolerable upright flow during the daytime, yet flows well enough at night to accommodate ICP spikes during
I see my Neuro-Endocrine dr tues and so am going to have her help me graph out a time line of my endocrine hormones over the beginning years of the shunts in 06 up till now although we only have measurements from 2 weeks after surgery back in June and non since then as I was supposed to see her in 3 months and re-check labs (everything from female hormones to thyroid, cortisol and growth hormone for isntance) so we are doing them now at 6 mo roughly which is better than nothing although we wont see upward trends (if we will at all now with the pressure having gone on (and off) for so long - I dont know nit if hormones will improve it wont be till we get the shunt in a good place for longer.
My Mom asked couldnt I just stay like I am, would that be so bad (ie would it hurt anything) and Dr.Bragg was sweet to jump in and "she feels like crap' and "we can get her feeling better more of the time". My Mom wasnt saying it like she wants me to feel bad but more because she sees me more when I am feeling better and we werent sure of a plan at that point. I appreciate my Mom's concern and appreciate Dr.Bragg because so has gotten to know me so well on many levels.
So Dr.bragg thinks the cause of the proxima (top) shunt occlusions have been due to pressures ebbing and flowing up and down like a roller-coaster with ICP (intracranial pressure) goes up and ventricle opens and then the coaster goes down and ventricles collapse and then back up slowly and ventircles open and close over and over. Or like a clogged drainage pipe - pressure builds up for so long that it eventually gets past atleast some but then re-clogs because of the defect and then is forced open again by pressure.
One of many things we talked about was switching the distal catheter from the peritoneal area to another site but no decision rhere and we are going to leave the proximal - beginning end in the frontal ventricle. The reason this was brought up is 1. sometimes shunt occlusions are because of CSF not being absorbed properly when drianed in to the peritoneal cavity and 2. this appears to be common in MPS Hydro pts.
Dr.Bragg and my parents and I talked extensively about why she thought repeating the ICP monitor would be helpful including she could leave my shunt open and place the ICP/EVD on the other side and watch pressures and then adjust to see where I sit when I have no headaches which they could also 'experiment' essentially by placing outside valves on the EVD (external drain) to see if these had any effect - she talked about a patient she's worked with of her partners who they had to put 6 valves on the persons EVD to get to a good place. She also would probably bring Opthalmology by for a consult regarding the vision stuff and talked about doing a brain dye study to see if she could locate any clear area where either a obstruction is happening or where the different parts of the brain arent communicating and this could be done while the drains where in place. We are first going to try doing a programmable valve and see if this helps - the valve will have 5 settings and can be adjusted by a simple magnet up or down to see how headaches respond to varied pressures as she does wonder if I need to drain more fluid. (with a programmable shunt would need to avoid scanners at airports and have it reset after any MRIs/CT scans)
She talked about my airway issues and how the anesthesiologist though they always (and I think they do) read my previous anesthesia notes and are aware of the difficulties (when they either call the night before or come in to pre-op they have been well versed) mutter away when they are trying to get me intubated and how she hasnt ever looked while they are intubating me but that it clearly is very difficult for anesthesia and she woulnt want their job. She mentioned kind of laughing but yet serious how these drs know my airway is bad but yet bc I look so good they clearly dont realize just how bad it is bc they apparently assume if I (again) 'look' normal then I really mustnt have that bad of airway regardless of all the previous anesthesiologists notes but then they are actually in the process of doing the actual intubation and fully get aware in a crash course of sorts of what they are dealing with. Many of these anesthesia docs have stopped by in post-op to comment on my airway and a few have admitted they where frankly blown away by just how much more difficult it was then they thought it would be. Kind of funny really - the reason we had gotten to talking about this was I brought up how I had met her colleague a few years ago and he clearly then didnt believe me I had pressue/needed a shunt and that I had a accurate diagnosis and how it IS frustrating that some drs cant get past how I present 'nomral' even when I feel like crap bc I beleive in taking care of myself and tryng to look 1/2 way presentable. I do little things to look a little better and it is only me so I handle 100% of my own care even if I dont feel good and dont feel like getting out of my PJ's. She mentioned how she can tell when I dont feel good and when I do but it took her a while to pick this up and if drs arent looking they wont realize bc I geneally wont admit to feeling bad unless it's really, really, reallllyyyy baaddd.
I talked to her how I appreciated she believes me despite all this and that she has never once questioned my MPS dx just because I "dont look like I have it" (ie my fingers are very long and my face is coarse but not as same features as some) and that it is frustrating much like the above trying to look decent even when I feel like shit. Well just bc I dont 'look like MPS' doesnt mean it hasnt done it's crap on my body from hydro to endocrine, cornea clouding to multiple repeat carpal tunnel surgeries and tendon transfer in hand to severe cardiac (all accumulated together) issues and on and on and on to hips, back surgeries, etc in addition to multiple hernias and a few surgeries as a kid. (its pretty clear by looking at past records I have it but some drs want to beleive what they want on initial consults and they are just arrogant know-it-alls). Anyways this wasnt meant as a ramble more as a vent but also as a 'thankful for a dr who really does believe me' and thinks independently regardless of what other comment to her.
I know there are things we talked about ive missed as we sat and talked for close to 45mins so if I do think of anythin bigger I can always edit this.
Thanks for stopping by,
Erica
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