Sinus problems

[serendipity730]

Hi! I recently had a CT of my sinuses, in hopes of finding a source of recurrent inffections. My results said that I had "extensive sinus disease." Has anyone had a similar result? Is there anything that can be done? I am in the hospital 3-4 times a year, which is strange because I have a relatively good FEV1 for my age. I would really appreciate anyone sharing their experiences with me! Thanks!<img src="i/expressions/face-icon-small-smile.gif" border="0"> Mary (20 yr old CFer)

 

[anonymous]

Hello Mary, I've had around 6 or 7 {sad I've lost count} sinus surgeries since I was 5 yrs old.Mainly to clear out the sinuses and remove polyps from the sinuses.Usually in my case once the sinuses were cleared out I would stay out of the hosp. for about a year.However about 2 years after the procedure I would need another.The infection slowly rebuilds itself back up which in turn requires another cleaning out.After each procedure though i would feel great.Head would feel 10 lbs lighter.Doesn't your doc. have you rinsing out w/ a saline solution daily?Seems like more & more docs are not recommending this anymore.Don't know why though.BYRON23 w/c.f.Tx 03

 

[serendipity730]

Thanx Byron! By saline solution, do u mean a saline nasal spray? I had have a lot of trouble with nasal sprays in the past. The cause me to have PROFUSE nose bleeds. My doctor did not want me to even get the CT scan, but when I sought a second opinion, it was recommended to me. I am in the process of switching to an adult CF clinic so I am sort of a CF refugee right now. Have you ever been treated for your sinuses medicinally rather than surgically? Thanks again! Mar

 

[anonymous]

Hi Mary – I am a Mary too…..I should write a book on how many ways there are to take out polyps & sinus surgeries! I am a recently diagnosed CF'r, so all the surgery on me was done without the knowledge of what caused my problems.At age 5, when I started school, I was sick all the time. At about age 9 they found I had polyps (they were almost growing out my nose!) I started getting them removed in the EENT Dr. office. He would use some kind of numbing agent (cocaine?) on cotton on a long wire & put them in my nose. Once my nose was numb, he used a gun like tool, with a loop on the end. He would put the loop around the polyp and then pull the trigger, which would cut the polyp & pull it out. I used to have a jar with polyps in formaldehyde for show & tell at school! I had this done every other month for about 2 years. I would also get my sinuses irrigated with needle & syringe on the other monthly visits. I won’t describe that, needless to say it was painfull and traumatizing for a child. At age 12, I went to the hospital for my first surgery. At that time, the only way to get into the sinuses was to cut in my mouth above my teeth and peal back my face! They cleaned out the polyps & scrapped my sinuses. Between the constant irrigation and surgery, I built up a thicker sinus wall, which has made it more difficult to drain any infection. Anyway, over the course of my lifetime I have had over 20 surgeries on my nose & sinuses. My history was like Byron, have em out every couple of years, be better for a while & then the build up until I am sick all the time & have em out again. The last was in Geneva Switzerland, at the university hospital. I had one polyp that was growing & wearing down the bone next to one of my eye cavities. They were afraid I might go blind in one eye, or have brain damage if I didn’t get it removed. So they purchased some experimental microsurgery tools, & I had my last surgery. They opened up a lot of my sinuses, carved & cleared. The last time I had a CT scan of my sinuses, the tech stopped it half way & called a doctor in & then they asked my “I hope you have had sinus surgery?” I assured them that I had, so what they were seeing was not a birth defect, but the hand of man! My polyps are back, the sinuses are infected, but I now I know what has caused it all & I live with it & the antibiotics. If you want more of the gory details, let me know. MARY55W/CF

 

[serendipity730]

I was wondering how long the recovery time is after these sinus surgeries. Mary

 

[anonymous]

Mary Depends on the extent of the surgeries. For just the polyps, there is no problem, I was just always carefull for a week because of nose bleeds. (I went through rush at the UW a couple weeks after one surgery, but had a major nose bleed, probably because of stress) & had to drop out. For sinus, my face & eyes were black & blue & swollen some, but not really painful compared to some of the sinus headaches I can get. For me the most uncomfortable part was the packing they would put in my nose for the bleeding & taking it back out, a day or two later. For the one in Geneva I was in the hospital just for a couple of days & off work for a week, more for looks & precautions than anything else. The wierd part is the open feeling or being able to breath & feel the air going in. You don't realize how congested you are until you can breathe again. Do you have polyps or just deformed sinuses? Most of the surgeries I had were probably before you were even born, so technology has really improved on technique and healing time. They don't have to be so invasive!People with CF that have sinus problems usually have small or no ethnoid sinuses. Those are the ones between your eyes. Others are deformed. Some people have a deviated septum. Mary 55w/CF

 

[Joni]

I am a 38-year-old cf-er who has been plagued with sinus problems all of my life. In fact, my first sinus surgery is what ultimately diagnosed my cf at age 11. I think I have had 5 surgeries all told; my last one, in 1993, when they completely opened the 'windows', was the last sinus surgery I needed. It might be worth inquiring about. My surgeries were performed by an ENT at OHSU (Oregon Health Sciences University). Unfortunately the wonderful doctor I saw, James Smith, has retired but I'm sure they could provide referrals.Irrigation with a water pick has been a lifesaver, literally, for me. At first it is a strange sensation, but after a few tries you may also become hooked. I now don't like the feeling I have when I do not irrigate!Joni

 

[anonymous]

It's me Byron again.Mary{serendipity730}my recovery after each surgery went very well.Only thing was the packing they put in place incase of nosebleeds.The packing varies from prsn to prsn.Some times I kept it for a few hours other times a day or two.When I referred to the saline solution it was a wash out.More than a mist.I use a blue bulb{typically used to suction a babies nose}filled w/ the saline;inserted then the pressure from the bulb washes out the sinuses.Prob. not a good idea for you if mist alone have given you a prob.Check w/ the docs of course though.Being 20yrs old & not really having sinus problems before;consider yourself lucky.Also I was treated medicinally was usually tried first;but it would only prolong the wait for the surgery.I hope you have found an adult C.F. clinic.Let us know how everything goes.

 

[serendipity730]

Thanks to all those who replied! I am going to the ENT tomorrow, so I will tell everyone how it goes.<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

I also had sinus problems before I was diagnosed with CF. I had a ct and went to an ent to talk about surgery. The ent told me that it wasn't worth it because they would just come back so he gave me rhinocort instead. I am actually thankful for that because it shrunk my polyps completely and after my diagnosis with CF my sinus problems have gone away and I do nothing for them. So basically I am just saying depending on the degree of your sinus problems you may just need some medicine. Good Luck!Emm

 

[anonymous]

O Lord, I don't want to scare you off of having a surgery you may really need. I have been going over in my mind if i should write this or not, but i decided to make you aware of this , so you can take measures to protect yourself. I had sinus surgery in 1997, the surgery went well, a bit uncomfortable , but thats expected. Only problem was, although i went into the hospital b. cepacia negative, i left b. cepacia positive. That was the first time i had been hospitalized in over 10 years. My fev1 was in the 90's, i had all the blood work done, sputum cultures, etc. and everything was fine. I had not had any contact with anyone else with cf at all. In fact when i go to the doctor there is usually only me in the waiting room. I started to notice symptoms a few days after the surgery. At first i thought that all the overwhelming tiredness was from the anestesia , but when it got to be a few weeks after surgery i knew that couldnt be the case. Then i figured it may be that i was just out of the swing of things and needed to build mysef back up to where i was energy wise before. That didnt work either. I just started to notice other odd things like, getting very low grade fevers same time each day, infections were harder to get rid of, my body hurt like i had the flu . Six months later they found i had contracted b.cepacia. I knew it had to be from the hospital. I was fine till i went in there for my surgery. Problem was, i wasnt one to wash my hands often when i was in there after touching things that other patients have handled.I was so healthy that i didnt think i had to worry much about getting anything. Boy was i wrong. I heard b. cepacia can live up to one year in a damp place ( like a hospital shower maybe) I watched when the housekeeping staff would come in and clean after a patient would leave, and realized they dont do a thorough job in the least. One time i saw old dried up blood on the floor ( a small spot). I also know they didnt use anything with a disinfectant in the shower. In fact i dont remember them even cleaning the shower. After all these observations i know for a fact that i got the b.cepacia in the hospital. My point is.... be sure to wash your hands a LOT, be aware if you touch anything another patient may have touched. This is your life you are trying to save, it may seem ridiculous to wash your hands every 1/2 hour but it may prevent you from going thru what i have gone thru. When i go in the hospital now, i never touch the door handles in the bathroom without using a papertowel, I always wipe down the phone with alcohol, and anything else i think my have bad germs on them. The housekeeping crew only thinks of what they are doing as a job and they dont do a good one at that. I think of it as protecting my life...... Now on a happy note the surgery made my sinus problems MUCH better. I was full of polyps and had a deviated septum, i also needed my ethnoid sinus's opened. for my sinus problem it was certainly worth it. Just be careful , observant and cautious and you should be fine ~ Diane