Sinus probs

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Dea

New member
Hello everyone
Just wanted to ask if anyone knew of a good sinus doc that deals strictly with CF patients. Ive had 4 sinus surgeries already this year...with no help. My doc is talking another one after the first of the year. The headaches are almost unbearable. I like my doc...I just dont think he has dealt with CF patients enough to know how to help. If you know of any....please let me know. It doesnt matter where they are because at this point I am willing to travel. Please help! Thanks!
Dea
31 w/CF
 
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anonymous

New member
Well I just had sinus surgery about 3 weeks ago. It turned out great my nose feels so much better and this guy deals with CF patients a lot. I go to Children's in Boston, MA. His name is Dr. Jones and he is fabulous. Also after the surgery he does nose irrigation. He washes out your nose with Tobi once a month. I haven't started that yet but he says it really makes a difference and keeps your nose better longer. I hope this helps a bit!

Nicole 22 CF <img src="i/expressions/heart.gif" border="0">
 
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anonymous

New member
That is great to hear about dr. Jones. My son is 2 1/2 and has an appt. with him next month. He has polyps and has had a hoarse voice since october. Chris son 2 with cf
 
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anonymous

New member
He is a great Dr. and he is really funny and just a nice guy, I am sure you will be pleased with him. I hope your son is doing well! <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF
 
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anonymous

New member
I went to a Dr. April, hes in NY, Long Island...surgery given in NYC...hes part of i believe one of the top ENT's...my sister who is a doc, one of her friends who went into ENT , when i asked about if he heard of Dr April before my surgery he said they Dr April was part of one of the i think one of the best practices and well known, in NYC....and his was image guided sugery(i dont know if thats how theyre all done, but thats what he did!) so there is no scarring, and no packing put into the nose! he was a miracle worker, i havent had a problem since! (2 years ago)...after the surgery i think iwent like 2 more times to irrigate it (those were right after the surgery for like the first 3 weeks or so)...i have to admit, i have plugs every now and then that come out on their own, but iwhtout him, i cant even imagine how my sinuses would feel...i havent had a problem since- and i go away on vaca, high altitude which i used ot cry from the pressure, and now i dont even have a probelm at all
 
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anonymous

New member
Nicole Thanks for asking. Yes we have been very lucky with my sons's health. This is his first sign of Cf. Up until now we have just done routine check ups. He isn't on any medication and has never had any bad colds yet either. I was surprised when they found the polyps. One is pretty large. Do you see a CF Dr. at Children's? We have been bouncing between fellows since Ryan was diagnosed at birth. Chris
 
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anonymous

New member
I do see a CF doctor at Children's. Her name is Dr. Donovan but she is an adult doctor. But there are so many doctors there who are great. A lot of the doctors are a little new to me so i am not sure of the names. All of the doctors I had have left already and there a lot of new ones but all of them I have hard many great things about. I am glad your son is doing well and that he isn't too symptomatic. That's always good to hear! <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF
 
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kate

New member
I am not diagnosed with cf but I have trouble with thick mucous in both my lungs and sinus. I am taking the duranase nebulizer treatments and they help my lungs but the thick mucous in my sinus sets me up for constant sinus infections. Because of the number of infections over many years the choices of anti biotics is now limited to rocefine by IV. This may not last long as the last time I had it I broke into a rash. I am desperate for information about thinning the mucous in my sinus. All the easy answers have been tried. I was on 1200 mg of guafinison for years and I do nasal wash twice a day but to no avail. Please help if you can.<a target=new class=ftalternatingbarlinklarge href="mailto:jeremysilver ">jeremysilver@sbcglobal.net</a>
 
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kate

New member
Yes I have been tested numerous times and all come back negative. I am looking for information on the duranase alpha used in the sinus.
 
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anonymous

New member
I have had two complete sinus revisions, one when I was very young and again 10 years ago. I am very pleased to say I haven't had sinusitis since my last surgery. My guy is Roger Nichols, a local ENT in Charleston WV. He has a really great demeanor and is a terrific surgeon. He completely "redrained" my sinuses as well as corrected a slight deviated septum. Only a week convalescence too!!! He is great. Feel free to E me if you want more info, lukembarrt@yahoo.com

luke/cf29
 
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anonymous

New member
the respiratory therapist in me must ask, do you or anyone you live with smoke? Is the thickness seasonal or year round?


Luke/w cf 29
 
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