[tri-med] Re: chiari malformation questions/Tess

At 11:14 PM 24/09/2006, you wrote:



>Bec's explanations are very difficult to translate and I really come across
>as the 'wacko mom' to her doctors (I'm sure!) Example.. to her cardiologist
>I had to try to explain 'worry jiggles' and 'breathen pain' that make her
>feel 'not good'... (my guess thus far is palpations and angina like pain)
>and now, her face is 'sparkly'?????  what is that supposed to mean???? but
>it makes her cry and want to 'cut off my face and make it dead' so I am
>translating  different kinds of pain, and she wants to know why it 'goes
>back and forth'....huh????

I wish she didn't have to experience all this, but it is fascinating 
to read how she tries to explain her pain the way she does.

When I said "phantom pain" I was trying to explain how facial 
conditions were when I experienced a sharp intermittent tingling sort 
of pain that come now and then even when I had no sign of blisters 
from the shingles". I think you may be spot on with the trigeminal 
neuralgia I believe that I have been left with some sort of residual 
nerve trouble from the shingles, which last happened several years 
ago. I don't believe I have an early sign of MS, as I have no other 
symptoms. (fingers crossed).

I have also experienced (in the past) intermittent tingling, 
sometimes like ants crawling over your skin. I have related this to 
stress and tension building up in neck muscles, as this is sometimes 
even experienced down the arms. My dentist says I have to stop 
grinding my teeth????: When, I have no idea, not to my knowledge, but 
the evidence is there. Could Bec have some underlying stress that 
could be causing this? Just a thought.


Tess had her cardiologist appointment a week ago and the viagra has 
not made any difference to her condition. They are continuing until 
the end of November to see if there is any change. Her blood levels 
are back to normal again, so that could be the better color in her 
cheeks that I am seeing. I saw her on Sunday at a birthday party and 
she was fine.

Sunday was a terrible day here in NSW it became very hot and high 
winds, and we had bushfires break out. Not near us thankfully, but 
Ian & Maxine lost power, so it became pretty uncomfortable. They had 
no power till Monday afternoon, yet when Frank and I got home we did 
have power.

Hope you can get some solutions for Bec soon.





>and yesterday I called the MS society local chapter (80% of MS patients get
>trigeminal neuralgia) to ask what they do to get the pain to settle down and
>got some interesting things to try but from what I understand Bec's
>explanations are bang on and things like tingling, burning and electric
>shock like pain that comes and goes, are what verbal adults are using to
>describe their face pain.
>So basic trigeminal neuralgia would fit but it is now on both left and right
>and lower mouth, lip area....though it does seem to have backed off a little
>on the left...maybe what she is describing on that side is a slight numbness
>where a couple of days ago there was also pain on that side. I just don't
>know....Bec does feel that this is unfair and she gets too much. So we are
>trying to ignore everything that we can and just deal with whatever is
>bothering her the most at the time. I have even changed the med routine,
>combining as much as I can rather than spacing things out through the
>day...my thinking being that anything that I can do to make her feel less
>'sick' might help her feel better......isn't that silly...well, I don't know
>what else to do.
>
>btw.....how is little Tess doing?
>
>
>Catherine, mom of Becky (Trisomy 13 Mosaic, 31 years old)
>
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
>
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