Ok, let's talk ICP

[sweetjen680]

Those of you that have had decompression, bony, full, or both...;-)...

Do we tend to have a HIGHER ICP or...do we just feel our ICP rising more than other (aka..normal...lol)  people? I hope this makes sense....

[sweetjen680]

MRI is today!  Thank goodness... Seriously, my headaches have been terrible lately.  I just know that they are going to get them and see nothing and then I will be stuck with these unexplainable headaches.  I was trying to explain it yesterday.  If I were not aware of my chiari and if I would not have had brain surgery 8 months ago, then I would most definitely think that what I am feeling is not normal.  However, I do know and I think I go back and forth between feeling like this is how I am just going to feel and paranoid. Appointment with neuro is Friday, but will probably hear from my NS in the States before that.  The hospitals can access each others records, including all films and labs. It's mighty handy.

[selmaS]

  Unfortunately this is something we all need patience for, as this will take time, sometimes longer then we thought...sometimes not....

Hang in there and do keep us posted on that next Dr visit goes : )

[sweetjen680]

Thanks!  That makes perfect sense.  I am trying to figure out e pattern wi my headaches, but I haven't been able to, yet.  My headaches are not nearly as bad as they used to be, but I also had the terrible hydrocephalus to add to it.  Should be having a MRI in the next 2 weeks and neuro follow up.  Hoping to rule out nerve damage for my swollen tongue base, as well...

[selmaS]

  Hi, I would have to agree with zygy....and the fact some of us have related issues like EDS or POTS, can also be a factor in how sensitive we r to the weather or changes that go on inside of us as a result of changes outside.....

JMHO

[zygy2]

:)  My guess would be all of the above! LOL  I would guess that there are some of both!  Lots of people have high pressures and end up with shunts, lots of people seem not to need them so it is a matter of finding out what your body is up to!  I do think that I had WAY more headaches before my decompression (migraine style) than I have now which leads me to believe that it was more pressure related from fluid not flowing out or I would think I would have the same number of migraine style headaches now.  I have a shunt that was put in to try and help with a leak and i can tell you that with the low pressure headaches I now know that I DON'T need a shunt to lower the pressure... I can't wait to get this thing out!  There are lots of complaints about headaches with weather changes so that makes me think that some people are sensitive to changes so it would also make sense to think that some people are much more sensitive to changes in their bodies.  This is why I think that having a Doctor that listens is so important, we are all so different and need to be able to communicate with the people trying to help us.  -zygy