Hi everybody - I am brand new to this and I guess I am here out of total frustration. I am looking for some general knowledge, advice, or just plain alternative practices that may keep me away from another surgery or a long-term prescription on Prednisone.
Couple of Facts:
1991-20 yrs old-First Nasal Surgery (septoplasty and polypectomy)
1999-28 yrs old-Second Nasal Surgery (septoplasty and severe polypectomy)
2001-29 yrs old-Third Nasal Surgery (severe polypectomy)
2004-32 yrs old-Fourth Nasal Surgery (moderate polypectomy)
As you can see, cronic sinus infections and the continual re-growth of nasal polyps have resulted in 3 surgeries since 9/99. Is this common among "us"? I have been on allegery shots since 2001 and take Nasonex (albeit not so regularly from 2002-2004 due to my poor prior judgement). As of my most recent surgery this past November, the Dr. has recommended routine (2-3 times per day) nasal irrigation which I use a SinusRinse pre-mixed product. He has also put me on a Prednisone prescription which will last for the next 3 weeks (I have actually been able to smell for the first time in 3 years...). There is current thought as to if he wants to keep me on a low dose (5 mgs per day) of prednisone going forward. However, I am quite nervous about this due to published side effects and my relatively young age. Therefore, I am looking for alternatives to fight this polyp and sinus problem.
In addition to allergies, some allergic asthma, polyps, and cronic sinus infections, I am one of those people allergic to aspirin and ASA's.... I think they call it Samter's Syndrome.
Anyhow, I guess I am looking to talk to other people who are in a similar position. This constant sinus fight is wearing me down and I am looking for suggestions. Any info available from a fellow suffer's perspective would be greatly appreciated. Has anybody else gone through such numerous sinus surgeries? Been placed on Prednisone? Had treatments for polyps that have actually worked? Underwent intense sinus surgery (such as an obliteration)? Should I be as concerned about these recurring sinus infections and polyp surgeries as I am? Any piece of advice, guidance, or words of wisdom would be appreciated.
PS. I have been researching ENT hospitals and hear John Hopkins is #1, with University of Iowa and Mayo Clinic also in the top five. Has anybody had any experience with these places?
I totally understand where you are coming from. I have had 2 sinus surgeries in the last year and if I have my next by the end of Jan. it will be 3 in one year, however this last one is an obliteration and is complete reomval of my frontal sinuses, very different from typical sinus surgery.
Your ENT is wise to tell you to irrigate with sinus rinse packets. I use those and they help a lot. You should consider buying a machine for irrigating as this will help you the most get the saline through all of your sinus cavities.
It is ok to take Prednisone, I have taken it many of times. However, you don't want to take it a lot as it can lower your immune system. If you are just taking it this one time and haven't been on it before or haven't been on it in some time than I'm sure it is fine. It does help relieve a lot of the swelling , but usually is temporary and not a cure.
I had polyps removed in this last surgery I had, but I can't tell you if they stay gone or not. I do know a lot of people get nasal poylps and have them removed only for them to come back again. SO, that is why again irrigating with saline is the best thing you can do to try and prevent them from coming back.
Many of us here know what you have gone through and how to deal with it. It is a tough road and not always the one we want to take. I know that i have delt with sinus problems for years and they have come to a place where nothing I do cures me completely. Just take care of yourself and do what your ENT tells you to do.
The cricket I presume? I think you are too young to know Jiminy Cricket!
I too have had many problems with sinuses and have just had a surgery in August. I have been on antibiotics since the surgery and am quite frustrated.
I want to just warn you about the Prednisone. Are they placing you on the dosing packet or starting you on the tapering dose of 80 mg for three days, etc.
I have used prednisone, the tapering dosage starting with 80 mg, at least 10 to 12 times over the last year and half. Prednisone is not a drug to take lightly. There are many harmful side effects and I suggest you look it up on the Internet. I am 51 and my spine has literally fallen apart from top to bottom. I am going to Hopkins next week for spinal surgery on the lumbar area and will need a fusion in the cervical area. Almost every disc has bulged and collapsed. I blame this on the Prednisone. Prednisone can affect your bones and cause many other health problems. Using it occassionally will not do too much harm, but to use it daily can have some very adverse affects on your body.
My mother has a friend that is in a wheel chair because of heavy Prednisone use for asthma. They cannot operate on her spine because her skin is too thin from the Prednisone. Her bones too have disintegrated from the Prednisone. A few of the Orthopedic Spinal Surgeons I have seen have recommended that I avoid the Prednisone.
Who did your surgery? I asked my ENT at the last visit if he thought I would need another surgery and he said no. Before I had this surgery I sought the opinion of three other ENT's. I was seeing one at Jefferson and he suggested my problems stemmed from the left side of my nose. The young ENT I allowed to do the surgery insisted that the left side was fine and only did minimal repair. I have had pain and pus since the surgery coming from the left side. I should have gone with the surgeon from Jefferson. I am embarassed to go back to him and tell him I chose another surgeon and maybe he did not do what he was supposed to do. I feel awful and am at a loss at what to do. I may just get someone at Hopkins to look at my sinuses when I return for a post op visit for my spine.
GH, my surgeon is in Irving, Tx, right outside of Dallas. His name is Frank Theilen and he is a wonderful ENT who has been in practice over 20 years. He has a great reputation and so far everyone i have talked to him that goes to him just loves him. He is very good and I highly recommend everyone to see him. The number there just in case you are interested is (972)402-8404.
Thanks for the info. My doc has also discussed sinus obliteration of the frontals. Appartently, he says that this surgery would stop any future frontal disease. It was explained the same way as your obliteration posting from 12/8/04. Interesting read. Question for you - have you researched the risks of the procedure? What are typical risks? Is it true that once they are out...no problems (thus the risk of an abcess from constant infection -or-menengitis are gone)? What about usefullness of frontals...are you confident that they serve little purpose? I am very curious to trade info on this, because this quite possibly could be a route in the future. Do you also suffer from polyps? Thanks!
I think I am going to give Johns Hopkins a call tomorrow to see if they will see me. I seem to have gotten around this sinus infection, but feel it is going to return. I have used one five day supply of Ketek and just started a new pack today.
What happens when they obliterate the sinuses? I noticed when the ENT was scoping my nose the last time that there seemed to be a hole on the right side. I do not remember signing papers allowing him to obliterate the sinuses. I thought he was just going to clean them out. Can they do that without permission? What do they do when they obliterate? Do they just leave a hole where the sinus was?
Do you use a specific kind of waterpik for irrigation? My ENT has advised against this, but I feel I need to try different things until I find something that works for me.
I didn't read the other posts so these two things may have already been mentioned, I had a diagnosis of nasal polyps last year so two things come to mind.
I too am allergic to aspirin and didn't realize it until I developed nasal polyps. When I stopped taking the aspirin they shrunk and eventually disappeared. However, at the same time I stopped the aspirin school dismissed for summer (I am a teacher) and I had transferred for the following year, to a school closer to home. About six months later I heard from a friend that toxic mold was discovered in our building at my former school.
I am assuming you are not taking aspirin or ASA's at all. If so, stopping them will definately help.
Mold or some other toxin in your environment is also something you may want to explore if you haven't done so already.
Good luck! I know how miserable sinus problems and infections can be!
My husband has Samter's and I have had a hard time finding much information on treatments. He had his polyps removed about 5 years ago and they are back with a vengeance. I have read about some diet treatments and also aspirin desensitivity treatments, but am wondering if there is anything else or something new they can do with the surgery to prevent reoccurance. Let me know if anyone has successfully dealt with their problems with Samter's.
Surgery doesn't prevent the recurrence of Polyps, the best thing to do is keep them from recurring to the point where surgery is necessary. Aspirin desensitization is one of the things that may help keep them from recurring.
There are a couple of other medical things that may help keep them from recurring - Leukotriene inhibitors (like Singulair) seem to help some people avoid a recurrence of polyps as do regular use of steroid nasal sprays like Rhinocort AQ and Flonase.
The other thing that helps keep them from getting too bad is occasional courses of oral steroids which can shrink them down so that surgery isn't necessary.
I've been fortunate that the combination of Singulair and Rhinocort, along with regular saline irrigation, seem to have kept my polyps recurring for the last 7 years. I don't know if that approach would help him but it's worth a try if he hasn't tried it before.