Just a super quick note - I talked to my neurosurgeons nurse yesterday late afternoon and they are working to coordinate the appt between my neurosurgeon and the neurologist who will help my nrsgn figure out if this could be a pressure issue or just needing a different valve issues. My neurosurgeon also sent me an email reply to a couple questions I had and said that she would also try to coordinate the drain and monitor placement and tying off the shunt (to make the drain more accurate) for next week. I'll post one part of her email as it is quite interesting but needless while I desperately just want to get this done and figured out next week is about the worst possible week this all could be happening (I had hoped by some small miracle we could do it this week although w the holiday it made it hard and it does mean o'll be able to keep both of my nephews this weekend which should be nice and will make both happy especially Zan my youngest one.) Next week is the week I will be at UW anyways 3 of the days for the APF table myself and my regional manager are staffing for sept pain awareness month. If this really does happen next week this will be the secnd year in a row that I will be forced to pass off or cancel the event as last year I had my other WI APF leader manage the table for me due to another surgery being moved up. Sometimes I hate MPS with a very deep passion.
Earlier today I went with my sister to pick up my youngest nephew from his 1st day of 4K which he will do 3 days a week and then will do his early childhood 2 afternoons a week and his Autism ABA class in between this schedules to. Everyone was concerned how Z would do but he apparently did great and when he would get overwhelmed with the other kids noise he would tell his aid or teacher "it's very loud in here" or something along those lines instead of breaking down in a fit/crying and he also will have a area of the room he can go when he needs a little time alone. Im super proud of him an the strides he has made!!!
This is only a small portion of the email but I dont want to include it all and I also dont want to post any detail oriented info - just thought this was interesting and a different but good explanation of the causes of pressure in MPS:
"CSF pressures in general are not compartmentalized, but pressures can build in one area and cause a generalized increase in the brain pressure. Pseudotumor is likely more of a problem with absorption of CSF, whereas hydrocephalus can be that or it can be an obstructive problem. Problems with absorption of CSF are also seen in other syndromes, like glycogen storage diseases. The problem isn't so much the definition, but defining what the problem is and working at solving it. Sometimes addressing one or both still doesn't solve the problem because it doesn't necessarily deal with brain compliance (how stiff the brain is)."
Will update when I know more - just please say a prayer I can cont to have patience and that symptoms do not get any worse than they have been as this has been a tryin past 2 weeks especially at times given the headaches which seem to get worse and the vision issues that come and go with the H/A's and then other hip/stomach and hand issues which are not related but the hip and hand issues I do need to get taken care of sooner or later.
Take care,
Erica
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