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Old 07-22-2012, 01:38 PM   #1
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Maxillary sinus POLYP that no one can find!

I am at the end of the rope... for the last 2 years I had CONSTANT dull, low grade burning pain on the inferior nasal side of my right eye and NOONE could determine what caused it. First, it was diagnosed as "subclinical uveitis" because I had pain of the eye/orbit, very non-specific with no presenting signs. It was treated with Pred-Forte steroid drops with no success. I was taking all sorts of OTC pain meds which were not helping either, but I kept on trying, increasing the dosages, trying different combo. I thought it might be trigeminal neuralgia, but it was very atypical from every description on the web. And VERY LOCALIZED. In the meantime, I went to neuro-ophthalmologist and my PCP ,went thru the series of tests (blood tests, MRI of the brain) - nothing! Everything was normal except "mild inlammatory changes of maxillary sinuses". So I went to ENT, who gave me the course of antibiotics (Augmentin, 875 mg) and oral steroids for a week. NO HELP, the pain was still there. ENT ordered CT of the orbit and sinuses, and it was read as normal! So, ENT doctor gave up and said "it must be idiopathic neuralgia", so I was on my own again. Well, I got a hold of Benadryl and Sudafed, started to do nasal rinses and the pain responded! For the first time ever, something felt different. It will either remove the pain temporarily, or reduce it greatly, to the point where if I am distracted I forget about it. But, if I did not take those meds, the symptoms would come back right away, with same intensity. So, I knew it was something in my sinuses, and something that had a localized mechanical contact with a nerve. I went to a different ENT, who ordered MRA and another more detailed MRI, of my sinuses. It was read as normal, with mild polypoids on both sides! My left side had no symptoms. but on the right side I can point at any time where the point was. So, my ENT said "let's try the surgery. I am not sure if it will help, but it might" and we booked FESS for Aug.3rd. I was not comfortable with him going in"blind", not knowing what he is looking for, so I thought "If I can find a way to control pain, I won't need a surgery". And I went to neurologist who did sphenopalatine ganglion block, during which I experience a temporary relief of pain, but mostly due to vasocontriction of the nasal passage, not lidocaine action. But that same neurologist looked at my MRI slides (there are so many of them and most doctors just scroll through them looking for something big and obvious), and he looked at them very carefully and he found a POLYP! Seating right next to the infratrochlear nerver location, causing a slight indentation of the anterior ethmoid sinuses. It is only visible on 2 slides out of 76, and it's small. Talk about "wrong place at the wrong time"! If the same polyp was couple of mm lateral, I would have no symptoms! And how frustrating it is to trying to find the answer to my problem, with doctors overlooking those two slides! Could it be the answer? it makes the most sense to me, living with this pain in the same location and getting some relief from meds that reduce swelling - the polyp moves away from the nerve, pain reduces. Then, the polyp moves back, and contacts the nerve again. The pain is constant, because this polyp is constantly touching the nerve.
Now, the question is - I have a surgeon who doesn't see anything wrong with my MRI, and I have 2 weeks left before the surgery! Is it safe to go with a doctor who wasn't careful to discover the source of my pain, but quickly suggesting FESS to see "what happens" next? If he doesn't remove the polyp (which he didn't see and doesn't know about), but pain will remain and my sinuses are altered for no reason... I have another appointment with him before the surgery, but I do not have the trust in him anymore. He works in the "teaching hospital" meaning there are going to be residents taking part of my surgery which also makes me uncomfortable. What do I do? Because I am a full-time student, I have Medicaid for another 2 years, but I can take student loans to do "self-paid" surgery with a good doctor, as a last resort. Or wait 2 more years, with constant pain from the polyp on the nerve, but I know it won't kill me... I have 2 weeks to decide... and I am scared.

 
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Old 07-22-2012, 07:58 PM   #2
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Re: Maxillary sinus POLYP that noone can find!

There's a lot in your post to respond to, but here are a couple of quick thoughts. First of all, MRIs are not very effective in diagnosing sinus issues so I wouldn't put much stock in the MRI results (CT scans are much more effective and are preferred by most ENTs and surgeons because the provide better contrast between the bony anatomical structures and the soft tissues and polyps, etc.).

Second, I'm not sure your theory about the polyp touching the nerve is a good explanation of what's going on. There are very few nerves in your sinuses and they aren't on the surface, they are under the mucous membranes, so it's pretty unlikely that a small polyp (that would only show up on 2 MRI slides) could be large enough to put pressure on a nerve.

Third, if your surgeon doesn't see the problem there is no chance that he's going to be successful in addressing it surgically, so please don't have surgery just because it "might" address your issue. Surgery is only successful in cases where the surgeon has a clear anatomical objective. General FESS to try to "open up" your sinuses is rarely successful.

On your final question of the doctors involved in your surgery, most of the doctors who really know how to treat sinus disease work in teaching hospitals (and have residents involved in treating their patients). I would recommend that you stick with the doctor in the teaching hospital (who is going to be much more aware of the latest surgical and medical techniques than an ENT in private practice) but work with him to exhaust all of the possible medical options before you proceed with the surgery.

 
Old 07-23-2012, 07:46 AM   #3
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Re: Maxillary sinus POLYP that noone can find!

I had pain in the side of my nose also. It was sharp and would extend just above my eye. Sometimes I would have the sensitivity of touching my cheek. I would be on antibiotics now and then, but mostly would use steam and inhale it over and over. I had a body scan for bone issues and the sinus area showed up as white on the xray. I went to an ENT who put me on long term antibiotics. I then had a ct scan and it showed a chronic sinus problem. My nostrils were also very thin affecting my breathing so he sent me to his surgeon partner and said while she fixed the nostrils to clean out the sinus while she was there.
Much to the surgeon's surprise she found mold and fungus in my sinus that was like a rock. It didn't show up on any scan. I guess sometimes they just have to go in and take a look

 
Old 07-27-2012, 06:54 PM   #4
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Re: Maxillary sinus POLYP that noone can find!

thank you for your advice! All possible options are exhausted, and now the questions is - should I do the surgery or live with symptoms? I change my mind every day about it. I watched the surgery online, did all the planning (taking 3 weeks off) and now it's the count down to Aug. 3rd. I saw the surgeon couple of days ago, went over last minute questions and told him about my reservations. He understands my worries, says the procedure itself is straightforward (and his extensive experience will help), but if I do change my mind, he will understand. So, no pressure. No guaranties...Agh!

 
Old 07-27-2012, 07:02 PM   #5
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Re: Maxillary sinus POLYP that noone can find!

Quote:
Originally Posted by Mel52 View Post
I had pain in the side of my nose also. It was sharp and would extend just above my eye. Sometimes I would have the sensitivity of touching my cheek. I would be on antibiotics now and then, but mostly would use steam and inhale it over and over. I had a body scan for bone issues and the sinus area showed up as white on the xray. I went to an ENT who put me on long term antibiotics. I then had a ct scan and it showed a chronic sinus problem. My nostrils were also very thin affecting my breathing so he sent me to his surgeon partner and said while she fixed the nostrils to clean out the sinus while she was there.
Much to the surgeon's surprise she found mold and fungus in my sinus that was like a rock. It didn't show up on any scan. I guess sometimes they just have to go in and take a look
Did your pain go away??? I asked my surgeon about the possibility of fungal infection, and he said "unlikely with my CT scan" - there is a certain something he would notice in that case. Fungal infection can be very serious - I am glad it wasn't the case with you.

 
Old 07-29-2012, 05:17 PM   #6
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Re: Maxillary sinus POLYP that noone can find!

yes the pain went away. It did not show up on a ct scan. Dr said it was just a chronic sinus infection. The surgeon was shocked to find a rock in my sinus. The mold and fungus had been there so long it calcified. She hit it with the scapel and it pinged. NOTHING showed up to indicate there was fungus or mold there. Fungus apparently isn't that rare. It comes from dirt. I will guess my years of riding horses in dust could have been the cause. Mold can grow in dark moist places.

 
Old 07-30-2012, 01:29 PM   #7
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Re: Maxillary sinus POLYP that noone can find!

Kruniza1-

You're sort of in a tough spot. It sounds like you're at the end of your rope with all of this but the surgeon's not really sure the surgery will solve your problem.

The fact that your surgeon is at a teaching hospital is actually a very good thing because it's likely that you'll get good surgical technique and follow up. The fact that he's a surgeon means that he's going to lean toward surgery as the solution, which isn't always the best thing.

The only thing that you might consider would be taking one more run at medically managing your symptoms before going through with the surgery (which can always be rescheduled). Typically, medical management is going to include several things you've already tried (saline irrigation, antihistamines and decongestants) plus a steroid nasal spray and possible a short course of oral steroids.

The problem with sinus surgery is that it really only works when the surgeon is addressing a specific physical aberration - removing polyps, increasing openings to improve drainage, etc. - and you don't quite have anything that is all that obvious.

Since it sounds like your surgeon understands the dilemma that you're facing - and isn't really pushing the surgery - have you thought about asking him if there's someone he'd recommend that you see to search for a medical alternative to surgery (in all likelihood an allergist who treats nasal polyps and sinus disease) before you go ahead with the operation?

It's a tough decision so good luck!

 
Old 08-06-2012, 02:41 PM   #8
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I HAD the surgery! Whew....

I finally had the surgery, on Aug. 3rd 2012. The surgeon was brilliant, surgery went well, and I am on my 4th day of recovery. The procedure went so well, I hardly had any pain the first 2 days, and then, on 3rd day I made a mistake of putting Visine drops in my eyes! Well, it went right into my sinuses and it hurt!!! I was so upset with myself, I still can't forgive this error on my part... Visine has some vasoconstriction action, and preservatives - not something the raw surgical site in my sinuses needs right now! AFter that, I have a mild pain (again!) and some nasal discharge (again! my nose bleeding stoped at the end of day 2). I called the Dr. and he told me NOT to put any drops into my eyes (especially not medically necessary drops like Visine), and not to worry, it should not cause any long term damage, just might have irritated my mucosa. AgH! Talk about patient compliance issue!!! So, now I am back to square one, not sure what is going on until I see my ENT doc this Thursday, for splint removal (that should be "fun"). Also, he told me not to rinse my nose, which is different from anything else I've heard, but I am going to listen to my surgeon and stay away from my nose. I can't wait to rinse my nose though, it feel stuffy and wet and uncomfortable. Does anyone know - does it help recovery to keep sinuses moist or dry RIGHT AFTER the surgery? I just hope everything inside there is ok, after the Visine incident, but I can't rinse, or wipe or do anything about it. Crying is probably a bad idea also? kidding, sort of...

 
Old 08-06-2012, 02:49 PM   #9
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Re: Maxillary sinus POLYP that noone can find!

Quote:
Originally Posted by Mel52 View Post
yes the pain went away. It did not show up on a ct scan. Dr said it was just a chronic sinus infection. The surgeon was shocked to find a rock in my sinus. The mold and fungus had been there so long it calcified. She hit it with the scapel and it pinged. NOTHING showed up to indicate there was fungus or mold there. Fungus apparently isn't that rare. It comes from dirt. I will guess my years of riding horses in dust could have been the cause. Mold can grow in dark moist places.
Mel, how long did it take to recover? I had my surgery 4 days ago (yeah!), and went up and down - it was almost painless until I put Visine into my eyes and irritated my sinuses badly! Now, I feel uncomfortable and mad at myself, but doctor said not to worry. I do feel pain and pressure now. How long did it take for you?

 
Old 08-06-2012, 06:50 PM   #10
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Re: Maxillary sinus POLYP that no one can find!

Quote:
Also, he told me not to rinse my nose, which is different from anything else I've heard, but I am going to listen to my surgeon and stay away from my nose.
You have to avoid saline rinses because the surgeon chose to use splints (some do, some don't). A saline rinse could easily dislodge the splints which would defeat their purpose.

Quote:
Does anyone know - does it help recovery to keep sinuses moist or dry RIGHT AFTER the surgery?
Moist is much better than dry. Dry can cause some bleeding and irritation, and will cause the mucus to dry out. Drinking LOTS of water, standing in a steamy bathroom/shower, etc. should help keep them moist without rinsing.

 
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