calling all polyp patients

[anonymous]

My daughter is apparently the youngest in the city of Toronto and areas to be having surgery for her polyps. I can't believe she is going under for this. I try and tell myself that other parents are going through alot worse, such as their babies getting open heart surgeries and such, however, I can't help but feel incredibly guilty and sad and mad and the feeling of not wanting to face her when she awakes from surgery. I just keep thinking am I doing the right thing? How do I justify causing her pain and putting her in a dangerous situation for this. Is it life threatening..NO, is it necessary.. well maybe for some comfort on her part, but worth the pain and risk? If anyone has thoughts or opinions, please feel free to share or yell or convince or just well watever. I just need to hear something from fellow CFer's.
Thanks N. ps my angel is four years old.

 

[anonymous]

My daughter was in the third grade (about 8yo) when she had surgery for polyps. I don't know how your child is feeing but my daughter could hardly breathe through her nose. We were terrified of the surgery and anesthesia but we had a great doctor and felt comforted by his expertise. After the recovery period (they pack the nose for a week or so) she was so much better. Her doctor recommended using a homemade saline solution 2-3 times a day (we now do it 2X a day) and said she was basically "married" to it but that it would keep her sinuses open. She also uses Rhinocort in the evening. I really do believe the saline spray works. I mix about a quart of water with about 3 teaspoons of kosher salt (has no preservatives) and one tsp baking soda. We then put it in an emptied out sinus spray bottle (such as Afrin). I make a fresh batch at least once a week. She sprays about 10-15 times and blows her nose. I recently met someone whose child (not CF) has chronic sinus infections and her doctor recommended the same thing. The salt solution also makes the ph of the nose resistant to infection. Good luck and we will keep you and your child in our prayers.

 

[kybert]

if the polyps are bad then its worth the risk. they are very very uncomfortable and painful. i had polyps removed along with sinus surgery a year ago and the relief i felt after i had it done. i could actually breathe through my nose [i had a large polyps blocking each nasal passage] and it didnt feel like i had a huge blob of plasticine up there anymore. your daughter is going to go through alot of risky procedures through life so dont feel guilty, its compltely unavoidable. hope everything goes well.

 

[EmilysMom]

I felt the same way when Emily had her first polyps removed. She was five but it was well worth it. I could actually hear the change in her breathing afterwards and she felt better. She was nervous but came through it all okay. I think Mom had a harder time with it!

 

[anonymous]

Hi

My son is now 26 and had a few polyp surgeries when he was younger. His first one, if I remember correctly, was when he was about 6. I think altogether he had about 5 surgeries done and after that they never grew back again. I'm sure you will feel better after the surgery when you see what a difference it will make to your daughter.
My son also had these done at Sick Kids in Toronto.

Sandy, mother of Matt 26 w/cf and Mark 23 wo/cf

 

[anonymous]

Hey guys and gals, thank you so much for the quick response. I really appreciate hearing it from all of you, it just meens more. Anyway, just a few questions if you all don't mind. 1) did any of you have night chocking with response to the polyps? see my daughter has always chocked at night and now I'm second guessing myself if it is because of the polyps or maybe something like sleep apnea. That is where the membranes fall to the back of the throat and cause the patient to chock and wake themselves out of sleep in order to breath. See, could it be that? and not the polyps? How did you guys breath at night? My four year old can't catch her breath at night or day but is post nasal drip part of the polyp problem? I'm really parinoid I realize that, I just want to be sure and no one has checked regarding sleep apnea and or other sleeping disorders. She does have a runny nose most of the time say 85% of the time. Just need convincing I guess or reassurance. thanks again N.

 

[anonymous]

It might be post nasal drip because it won't come out any other way because her nasal passages are blocked. I have waken many times from snot comign down my throat and it choking me. Then its a pain to get out. So I would say see if the sinus surgery helps her sleeping too. If not tell the docs and have her get a sleep study done to see what is wrong. Go a head and mention the sleeping anyway there may be some hint to tell the docs what it is. If it is sleep apenea sometimes that can be helped by a surgery or even an aparatus to help bring air to her at night depending on how bad it is. But of course don't worry about it till the time comes. Tell her doc first and go from there.

 

[anonymous]

our son is 3 years old and had surgery for his polyps when he was 2 years old. The surgery was well worth it, he is so much better for it. We were worried too about the pain but it seemed to be very minimal and short lived. Good Luck

 

[anonymous]

RE: three year old son has had polyp surgery. Where do you live? Was his breathing bad at night as well? Did he always have the runny nose? How is it now for running? (the nose that is)? thanks N.

 

[anonymous]

My daughter was 7 when she had her polyps removed. They were everywhere, "like a jelly fish", was the description from her ENT. She did NOT have packing in her sinuses after the surgery because the Dr. said removing the packing was more traumatizing than the operation. We used an antibacterial spray and a steroid spray for the next month and there were NO problems. I'd make sure the anesthesiologist has lots of experience with Children. The worst part was a sick tummy from being put under, but that passed in a few hours. Other than that she bounced right back within days. I don't think she had any pain medication other than tylenol. It's not as bad as it sounds and the relief is worth it. You'll notice she sleeps better and probably eats better because she can now taste!!
Good luck.
Debbie - Mother of 2 girls w/cf

 

[anonymous]

Thanks Debbie, that is very comforting to know. How old are your girls now?

 

[anonymous]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>She did NOT have packing in her sinuses after the surgery because the Dr. said removing the packing was more traumatizing than the operation.<hr></blockquote>

I just saw that and had to mention that's entirely correct <img src="i/expressions/face-icon-small-wink.gif" border="0"> I had my sinus surgery when I was 15 and I'll always remember my doctor saying "We sometimes put people under local anaesthetic to take the packing out, but I think you'll be ok". I wanted to strangle him afterwards <img src="i/expressions/face-icon-small-tongue.gif" border="0">

As others have said, it is definitely worth it. I'm not sure if it's exactly the same for children as young as your daughter, but I had some pretty bad headaches for a few days afterwards, but I could BREATHE! You just don't appreciate how wonderful breathing through your nose is until you can't do it. Good luck <img src="i/expressions/face-icon-small-smile.gif" border="0">

-- Emma

 

[HollyCatheryn]

Doctors thought I had lots of lung problems and I was always on antibiotics for my lung infections. Then they figured out that I had polyps and they were holding a bunch of infection in my sinuses. They waited much longer than they should have to do my sinus surgery (because they assumed it was my lungs) and when they did finally it was much more drastic and invasive than it would have been if they'd acted sooner. Not only that, I could breathe afterward. I didn't constantly have bad breath from the infection smell. I stayed off antibiotics for nearly a year (the first time in years for that). I had pink cheeks for the first time my parents remembered, gained weight and grew. It was scary and it hurt, but being able to be well for so long and feel so good - it was most definitely worth it. Especially because it probably saved my lungs. I still don't get lung infections if they treat my sinuses in a timely manner. One more thing. I'm on Reliv. It's a supplement that I got on two years ago. It has made my surgery recoveries much faster and easier and it's helped me to avoid many of the usual infections I get during a year. Get on the web and look up (I think) RelivInternational.com, you can find distributors near you and read more about the products. I recommend at least contacting a distributor because they can out you in contact with other families with CF who are using it so you can ask whatever you want. There are many people with CF in dozens of countries getting amazing results with this supplement - and it tastes good. My daughter loves hers and she's only been to the Dr. twice! Feel free to email me at jaloughlin3@sbcglobal.net

 

[anonymous]

My girls are now 12 & 13 and doing great!

Another thing, this operation was minimally invasive using the same type of orthroscopic tools they use for knee surgery. Tiny tools that go in thru your nose and scrapes and sucks out the polyps. It leaves minimal scarring and there was little bleeding. It used to be a much tougher operation. Make sure they're using these types of tools. (I'm probably a little off in my description, but I'm close.)

 

[kybert]

i never had packing in my nose when i had mine done. i guess im not really a bleeder. i had this bolster type thing under my nose that were held on my straps that went around my ear and the gunk just dripped onto that.

 

[anonymous]

Hey guys, keep talking this helping so much. It's helping me accept the reallity of the got to do it thing. I really appreciate your responses and honesty. But don't stop now, I still need the encouragement, and the balls if you will, to go through with this. Her surgery is scheduled for OCtober the 12th, this year. Sorry, but I still need to hear from you all till then if you don't mind. She's so little and I'm scared, please don't stop writing, till then anyway. thanks again

 

[anonymous]

Hi,

My daughter had her polyps removed for the first time at 5 months old. She was the youngest case our EENT has ever seen. SHe's had them removed four times so far and she's six years old. The surgery really helps open things up and allows her to breath again without feeling stuffy all the time. She has done well with the surgeries; the hardest part is coming out of the anesthesia and being sick. The worst part was after her third surgery, when she was 3 years old, she threw up so much blood, I was really freaked out. The anesthesia made her stomach really turn. We got the doctor to prescribe an anti-nausea suppository so she would stop throwing-up. For the next surgery, I gave her one of those right after the surgery when we got home. She did much better. It takes about 2 days to recover. We have been using Flonase evry night and are doing Sinuneb once a day. Sinuneb is just aerosolized saline. Its used in a nebulizer cup with a special attachment for the nose. It's been almost two years since her last surgery. She has a sinus infection right now but the EENT doesn't see polyps and says that's the best she's seen Maya's nose! We're so excited; maybe she's outgrowing the polyps!

Hang in there.

Lucy

Mom to Maya, 6 w/ CF

 

[anonymous]

My son (2 yrs old) was just diagnosed with a polyp in his right nostril yesterday. The CF Dr. says will follow until we notice any problems in his breathing. Funny thing was he just complained of something stuck in his nose days earlier. Anyways the Dr. says he has sent more children with CF for polyp surgery in the last year than he has in the last 20 yrs.

 

[anonymous]

I am so thankfull for my ENT doc. I've had about 6 sinus/polyp surgeries with him and it is such a relief once these things are removed! He does the FESS procedure where he uses the endoscopy thing and gets into all of mysinus cavities. My post nasal drip is gone, I can breathe out of my nose and most importantly my cough is a lot better after. I get really bad sinus headaches too so it's great to get them "roto rootered." My pain lasts only 1 day or so after surgery. I've never had them packed but I get the ol' gauz mustache to catch the drips. Once I had excessive bleeding and they wanted to keep me overnight but it stopped after a few hours so it was no big deal. I think it's time to get them taken care of again though because all of my simptoms are back but it's better in the long run.
After surgery I use Afrin for 3 days then a salt water irrigation all year long, along with Rhinacort and Sinofresh.

Keep your sinuses clean,
Emiy 22 pwcf

 

[anonymous]

Hey guys, I wanted to ask, do you have doubts with a CT scan? Sounds funny but, I keep questioning the CT scan and wether it is what they say. I'm not sure if it is my own issue or mothers intuition. I know she always has a drip especially in the fall, winter and spring and I know when she wakes up coughing in the night she has trouble catching her breath and she sounds like she is choking to death. Anyway, wow Lucy, I can't believe Maya was that young when she got it done. We are now treating a lung infection for the second time hopefully it's gone before surgery. Well things are still happening for the trip to the hospital. Take care N