Thread: help
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Old 07-06-2014, 01:23 AM
pogo pogo is offline
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Join Date: Jan 2014
Posts: 124
10 yr Member
pogo pogo is offline
Member
 
Join Date: Jan 2014
Posts: 124
10 yr Member
Default your symptoms sound very serious, what is wrong with your doctors?

Did reprogramming your setting help (ever? where did you start? does position affect your symptoms)? Can you get in to see a surgeon? Have they done a shunt series (xrays to look for breaks in system) and CT (catches enlarged ventricles or bleeding)? If you show enlarged ventricles or a break in the system, that should be a clear issue they will have to fix. If there are constant symptoms, it might be worth a. getting your eyes checked, specifically having the optic nerve looked at by someone who is experienced with papilledema and b. having them tap the shunt and check the pressure (don't know if it works to compare that pressure with an LP pressure, does for my kid but her vents and spine don't have obstructions between them, that can tell us if the valve is functioning at that moment because her ventricles don't enlarge with obstructions). (Those pressure readings are not completely reliable but they might help identify there is a problem because they don't seem to want to listen to you). I assume use/lack of antisiphon is not the issue (I.e. other issues can mess you up). Still, DD just went through what matched prior obstruction symptoms that had resolved enough by the time we got her in (hour earlier and that would have been a difficult revision so avoiding surgery is mixed relief, all options have problems). Getting better took a longer time than it has before and it involved some intermittent double vision and balance issues, if those were constant that would have been grounds for a exploration/revision as well. Have you considered going to the emergency dept? The protocol they use to deal with emergent shunt problems might help you if your doctors aren't doing the job (assuming it involves head CT and shunt series as basics). For future... if you take a good support person along to your appts, you may get a better response (so consider the choice of person strategically e.g. if you are female and the poor listeners are patronizing men, make your support person a male who is 100% behind getting your issues resolved and will follow your lead on things; I used to bring my spouse when I wanted to be sure to be listened to, before I learned our surgeon listens better than anyone, so now I only bring spouse when there are issues to deal with so we stay on the same page. Heck, I would bring Santa Claus along if that would help get a good outcome).
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