sinus surgery

[Guest guest]

Hi Rosemary and n-

Thanks for the welcome and the info. I'm sorry to hear that Dylan

is having another surgery soon as well. In reading both of your

posts I was thinking that it is no wonder that we get so crazy

sometimes when this disease acts up- you never know just what to

expect, do you? I know exactly what you mean about worrying about

the breathing at night. I must check on him about ten times before I

really fall asleep myself. I have even thought about putting a baby

monitor back in his room to hear him if he gets into trouble at night-

he would freak probably!

I will mention the gentimycin- unfortuntately, is

allergic to most antibiotics so we need to be very careful here.

When he goes in for a clean out we have to do a desensitization in

the ICU first, because he reacts to most everything they have given

him- except Tobra interestingly.

As I read other peoples' posts I am noticing that a lot of people

are on Tobi or Pulmozyme. has never been on either of these-

to be honest, I don't know why. It seems like most everyone that

cultures PA is or has been on it. I think I'll make it a point to

try to pin down a more satisfying answer on that one.

Thanks again for the warm welcome and the support. Though I hate

that it is so, I am grateful to talk to others who know exactly how

you feel.

Take care,

Debi

[Guest guest]

hi all. jason saw the ent yesterday. time for yet another sinus surgery.(5 so

far).. this one is different tho'. instead of going up thru' the nares, the

dr. will make incisions between the eye and the nose on both side and go in

from there. has anyone else had this type of sinus surgery before.?

dani-mom of jason16w/cf,samie17wo/cf

[Guest guest]

has anyone else had this type of sinus surgery before.?

They used to do this type of surgery before they had the imaging

system currently available. I would get a second opinion before

proceeding to see if there is another option. I know my son's ENT

said sometimes they do have go through there to gain access to some

areas but it usually it is not necessary. Anyway, if they need to

make an incision through his face so near the eye (and it's possible

complications), I would definitely get a second opinion.

jan

[Guest guest]

No we had brain image guided surgery. Its done where a CD of a cat scan is

inserted and Dr. views it as it operates. its supposed to be the most

effective way of cutting away the " gook " , etc.

had his surgery today. He didn't do well with the anesthia. He vomited

13 times - his count - all blood!! He is so pale and exhausted so am I. We

had problems waking him and when we did he was feeling away and in cold

sweat. As soon as he stood he was dizzy, ready to collapse and vomited.

At least its over. Dr. showed us pix and explained that the mucous was like

glue in forehead which explains why he has been getting these headaches. I

hope it works!! Came home at 8 with him and had to do others treatments. CF is

relentless.........is never ends and they are always adding one more

treatment/med. Now on a oral, inhalation and irrigation! So is Dylan plus

regular stuff...........ARHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH-

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

[Guest guest]

I saw a boy last week at ENT's whose forehead (by eyebrow) they had to Drill

through to irrigate and open his sinus'. He was fine on Tuesday

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

[Guest guest]

In a message dated 2/26/2004 10:26:33 PM Central Standard Time,

ROSEMARY3FOR3wCF@... writes:

Rosemary

Oh Rosemary I feel for you because we have been there many times with my

oldest!! We went in today to the ENT and said she didn't think her polyps had

grown any. We have been doing the glutathione through the sinuneb twice a day

and

I think that is what helped. When they took that scope through her sinuses I

could see it on the TV screen and I did not see near as much thick sticky mucus

in her sinuses like I did the last time we were there. I stopped using it for

a week but I think I am going to order some more because I really think it

helps!! I even told her ENT that we have been using it and she said well what

ever you are doing is working so keep it up. It really made me feel good to know

that maybe all of the scream I have done to get her to do her treatments was

worth it. She was even excited to know that the medicine has been helping.

Anything is better then surgery!! Deb A

[Guest guest]

> No we had brain image guided surgery. Its done where a CD of a cat

scan is

> inserted and Dr. views it as it operates. its supposed to be the

most

> effective way of cutting away the " gook " , etc.

>

> had his surgery today. He didn't do well with the anesthia.

He vomited

> 13 times - his count - all blood!!

That's what it was like for our son. I hope you have a prescription

for naseau in case it continues.

I hope he feels better very soon!

jan

[Guest guest]

We went in today to the ENT and said she didn't think her polyps had

> grown any.

That's great news Deb!

jan