2024 and already have the next surgery booked. So my shunt has been kinda just left without anyone wanting to keep an eye on it and now I'm getting crippling headaches on being upright and spend most of my life in bed/supine we are finally looking at it.
I've had my ProGav VP shunt for almost 6yrs (Valentines 2018 insertion). I'm not sure what settings were supposed to be but I know the setting it's on now is very wrong. The shunt goes from like 0-20cmH2O to divert csf away from my brain. Usually when you put it in they put the setting around that 8-12cm and when they adjust do it in small steps. I've only had my shunt adjusted once and my current setting is 20....the highest...what?
So we are doing an ICP bolt where they drill a (another) hole in my skull and put a sensor into the ventricles of my brain for a few days and sees what numbers I get and act from there. I may need adjustment, might have a broken shunt, maybe need to tie off a shunt or even an extra shunt who knows. I am a bit irritated that they didn't even bother bringing my shunt down a little over Xmas seeing it's super rare to need it that high and there is o reason if should be that high even though my last surgeon didn't feel like sharing that info for my new surgeon.
I did ask about my mesh that's attached to my brain and apparently having metal attached to my brain is not worrisome....I got the mesh because my dura patch was attached to my brain but metal isn't a problem compared to flexible autologous material....
I've also been diagnosed with thoracic outlet syndrome and that probably explains why I never had much feeling in my right arm seeing my right subclavian vein is compressed 75-90% at all times....my left is compressed 50-75% in some positions. So if I hold both arms at upright the veins bringing blood to my heart are both 75% compressed....can't even say don't move my arms because even at rest my right subclavian vein is compressed 75%. The artieries aren't as bad but there is up to 50% compression in the right with movment. Who needs blood!
Also got diagnosed with hypersomnia in 2023 which is not surprise but finally got the official diagnosis that allows me access to subsidiesed medication. I rarely have REM sleep and fell asleep well under 5min each nap in the MSLT test. That was also on a day I heard bad news about a friend and got a MCAS reaction to food.
Combined ADHD was another "well duh" diagnosis. Any doctor who spent more than a few appts with me was very quick to offer their 2cents for "when I got the official dx". We also did cognitive testing and while my working memory as average (thanks adhd and lack of sleep) I did every well. I am curious how much better I could do when I don't have to do 2hes of tests upright and driving around to get here etc.
I will try and share more because I also need the emotional outlet. I'm hoping this year will bring a lot of step forwards medically. I'm also waiting to get my SIJ fused.
Kirstin
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