[tri-med] Re: Cysts

----- Original Message ----- 
From: "Therese"
> I have been thinking about this today....If they would fix it for a
> normal child....why  the heck do they even question it for my
> child...She is "her" normal!!!  And she is doing just fine...except for
> this growth right now...

Actually Therese they would say this to anyone.
I have a congenital cyst in front of my ear (actually three of them) and my 
ex had one behind the ear. In my case the doctor removed one of the cysts 
for cosmetic reasons but the other two are a case of "leave well enough 
alone" because they are too close to the facial nerve. I would have to 
choose a plastic surgeon very carefully if I went ahead to have them 
removed. Even then the risks of damage to the facial nerve would be very 
high.

With my ex the doctor explained that they would not remove the cyst when it 
was infected because it was too hard to ensure that they had the entire 
capsule and that they werent damaging nerves etc in the process. When it 
wasnt infected it didn't bother him. He is now in his late 50's and still 
has it.

When it fills up the doctor drains it, which is simply a case of cutting it 
and then placing a wick in to allow it to drain. It usually takes a couple 
of weeks to drain completely and for that time it smells (bad!!!) and drains 
pus mainly but for the first few days it also drains some bloody stuff as 
well. He would also take oral antibiotics sometimes but usually we would 
dress it with an antibiotic cream.

I was usually the first person to notice it was filling because it would get 
an awful smell about it (infection). Sometimes we would try and squeeze it 
and drain it that way, but the doctor placing a wick in was definitely more 
effective and it would take a lot longer for it to refill because obviously 
they got more of the gunk out than we did with squeezing. I have seen it get 
to the size of a small hens egg before he went to the doctor.

So I guess I am saying that I am with your doctor on this one. Cysts are 
generally benign and dont turn cancerous. Its a pocket under the skin that 
fills with sebaceous secretions (so they are at their worst during 
adolesence) and occassionally get infected. But its a superficial infection. 
If there is any risk of damaging the facial nerve I would leave it. Bells' 
palsy is NOT easy to live with (ask Alex) and in our kids the facial nerve 
does not always lie where it does in the majority of the population. 
Accidental damage of the nerve is not uncommon as a result. When Alex had 
his ears operated on (cosmetic and to aid in keeping his hearing aid on) the 
nerves did NOT lie where they were supposed to be. Although they avoided the 
facial nerve he has still suffered nerve damage and his ears are VERY 
sensitive. Many times he has asked if they can reverse the surgery and stop 
his ears being so sensitive.

His ear surgery has also led to the development of a "cyst" like like pocket 
at the top of his ear - and while its a pain its not worth the risks of 
further nerve damage by having it fixed.

I suffer from a genetic condition called neurofibromotisis (type 2) and I 
get all sorts of "lumps" which are tangles of nerves. They are very painful 
and once upon a time I used to get them removed whenever they appeared. 
These days, probably due to a combination of Alex teaching me that "if it 
aint life threatening dont sweat it" and complacency I let them go unless 
they appear in a spot that make life difficult (eg I had one on my thumb 
removed because it made it painful to turn on a tap). I do keep tabs on them 
because they can become cancerous but for the most part I leave them be.

And its the same with the cyst on my face. Its way too close to the facial 
nerve and an occasionally infected cyst is far easier to live with than 
irreversible Bell's Palsy.

Of course you may feel totally differently, especially if they are confident 
that its nowhere near the nerve, but honestly if it were Alex I would let it 
be.

"We come to love not by finding a perfect person, but by learning to see an 
imperfect person perfectly"
Sam Keen

Keep Looking For Rainbows!!
   _--_|\
 /Karen \
 \ _.--._ /
          v Karen, Mum to Alex (10 years, T-18 Mosaic)
http://members.optushome.com.au/karens

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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