Sinus Allergies, 3 Surgeries, No Improvement....HELP!

I'm not sure what topic to post this under...

I will summarize my history as best I can...

Moved to Sacramento area in Fall 2003 at age 22. I had no prior sinus or allergy problems of ANY kind. About 2 years after moving I started to experience extreme one-sided congestion when lying on my side. The congestion would clear completely but switch to the other nasal cavity if I switched the sides I was laying on. This of course led to me tossing and turning all night and never sleeping through the night. I went to a doctor numerous times over the next 3 years and tried lots of different meds but nothing ever really helped. I was always fine during the day or whenever I was up and moving around. ZERO allergies and/or asthma problems at this point.

In Spring 2007 I finally convinced my doctor to refer me to an ENT clinic. The Otolaryngologist took one look and said my septum is very deviated and I need surgery. I had surgery (septoplasty) for the first time in March of that year.

Throughout the next year I saw little to no improvement. After several appointments he told me I could undergo a rhinoplasty which would allow him to re set my nose and take the septoplasty up even further. He also took some cartilage from behind my ear and put it in my nose to prop my airways open even more. He had also done a before and after CT scan and determined I still had extreme sinus disease. He also conducted a sleep survey, tried several trials of various antibiotics and steroids to no avail. In Spring of 2008 I had the rhinoplasty. At this point I still had ZERO allergy and/or asthma problems.

I had the rhinoplasty….talk about a hellish recovery! Why would anyone do such a thing for looks alone? Anyway, again I had little/no improvement. A few months after I had an episode where the side of my face started to go numb and my teeth went numb as well. I went to the emergency room and they gave me afrin which subsided the pain and I only took for a few days. That happened once more about a month later at which point I just took motrin and stayed in the dark with my eyes closed. In the meantime I was still having congestion symptoms, but nothing which led me to believe that I had allergies and/or asthma. I again went on several trials of antibiotics and other meds to no avail. Another CT scan revealed little/no improvement.

Then as if things couldn’t get more complicated….my doctor had back surgery and died from complications about 10 days after.

That of course delayed my treatment (perfectly understandable) however my new ENT doctor reviewed my records and recommended I undergo yet another surgery…a FESS. Prior to that however I had begun to have light asthma attack episodes and underwent several pulmonary and respiratory tests to determine the exact cause. I was placed on advair and xopenex to deal with the attacks. I also had gone through several trials of various antibiotics to include avelox, bactrim, and a steroid which I don’t remember the name of. I underwent the FESS in April of 2009. It never seemed to help.  Symptoms have seemed to get progressively worse and have surpassed what tbey were to begin with before I ever first saw a general doctor.

Since then I have had EXTREME sinus congestion/allergies. I have tried EVERYTHING with virtually no relief…

Sinus rinse several times a day
Ocean Mist/Saline solutions
Allegra (been taking for 5 months now)
Singulair (also been taking for 5 months now)
Flonase
Benadryl
SinusBuster
Holistic Meds
Hot towels/steam showers
Motrin 800mg

My symptoms are persistent regardless of season, time of day, indoors, outdoors, geographic location, etc. They consist mainly of a completely congested, swollen nose, itchy eyes, and an itchy nose.  I also often have intense frontal nasal drip…I’m taking I can’t even switch tissues fast enough to prevent a drop or two from falling on my shirt sometimes.

I have only found relief in two different ways/methods…

Afrin (I KNOW that this is bad and I only take it maybe once or twice a month for not more than a day or two at a time) Sometimes not even this helps though.

Doing anything that gets my heart rate accelerated clears me up almost completely but only until my heart rate returns to normal….WHY!!???

I have spent many sleepless nights researching what is wrong with me and the closest definition I can find is allergic rhinitis.

HELLLLLLLLLLLLLLLLLLLLLP!!!!!

[ENTMD]

What an awful saga...

Look, without seeing you or or any of your records this is all pure speculation, but:

Your initial symptoms that you described -- the congestion that would alternate from side to side -- wouldn't have anything to do with a deviated septum or sinus disease.  Assuming there was basically nothing else beyond that (you didn't really say much other than that main complaint), I can't see how anyone could justify all of those surgeries you went through.

People with deviated septums have trouble breathing through one or both sides of their nose.  All the time.  People with chronic sinus disease have facial pain/pressure, purulent drainage, loss of smell/taste and inability to breathe through the nose.

From what you said, I would mainly just be concerned about your inferior turbinates (from a surgical standpoint).  If treating those did not help, and your sinuses were basically normal on CT, I would likely have referred you to a Neurologist.  There are various headaches and atypical facial pain syndromes that can present as congestion/pressure/fullness.

Sorry you had to go through all of that.  I hope your nose is at least pleasing to look at...

[reliefless]

First off, thank you so much for taking the time to respond to my post.

At the very first ENT appt I had my doc took one look and said my septum is deviated. He told me that was what was causing my congestion when laying down. My symptoms were subsided when up and moving around however it was definitely deviated. I assume there are various levels of deviation...perhaps if it were worse I would have had the same problems regardless of whether or not I was lying down?...I don't know, I just know what I was told.

I definitely fit the profile you described for chronic sinus disease...I have been convinced I have this for a long time. All CT scans I've had done show that it has not gone away before or after any of my surgeries. My doc would show them to me and point out areas which should be black---they were all completely gray. Like I said, medicine has not helped. My doctor even wrote in my records "patient has chronic sinusitis despite maximal medicinal therapy". What I'm getting at is that my sinuses have never been normal on a CT scan.

So now, with no medicine helping and very allergy-esque symptoms....what do I do? Is it possible that I have like no allergen filtering mechanism due to all the surgeries? Is this allergic rhinitis, chronic sinusitis, or something else (and if so...what?)? What should be my next step in terms of controlling my symptoms?

I am in the process of scheduling an appointment with an allergist. My best guess at this point is that I've developed very radical allergies.

This is sooo frustrating...I'm an IT guy for crying out loud...I don't know the first thing about medicine/healthcare.

Thank you so much for your input.

[reliefless]

One more thing....why in the world do my sinuses feel like a million dollars when my heart rate increases??? Could this be a hint as to what the root cause of my problems is?

[ENTMD]

OK, so that wasn't clear to me before that your symptoms and CT indicated chronic sinus disease.  Certainly the SINUS surgeries would be appropriate for that.  Sorry those didn't work...

I think seeing an Allergist is a very good idea. You may be a candidate for other medicines and/or immunotherapy.

The thing with your heart rate is interesting.  I suppose it could be explained by the general "fight or flight" responses in your body.  When your heart rate increases, some vessels in your body constrict in order to increase blood pressure and blood flow to other parts of your body.  This could result in decreased fluid being pumped into your sinus lining and thus a decrease in the congestion.  Basically Afrin works the same way, only at a very specific spot (where its applied).

Chronic sinus disease can be a very frustrating condition.  We don't know nearly as much about it as we would like to.  For something that should seem so simple (just some swelling), we ought to be able to do more...

Have you tried hypertonic saline irrigations?  

[reliefless]

I have both the NeilMed Sinus Rinse products and a stockpile of ocean mist which I use several times a day. It doesn't really clear anything up, I think the reason I do it as much as I do is because I feel it will clean out any germs or allergens which are contributing to my symptoms; I really get no relief from those types of products however. Flonase does next to nothing for me as well.

Your heart rate explanation makes sense I suppose...I'm happy with anything that helps me not feel crazy for running up and down my stairs several times a day to clear me up for a few minutes.

I hope the allergist can help me. I'm doubtful though because 1, I haven't gotten any relief thus far and 2, I have already been taking allegra and singulair for the last five months.

We will see I suppose, I am hoping to get an appointment within the next few weeks...

Thanks again.

[SuperCorn]

Hi. I am no doctor and am just getting up to speed on all of this myself. Two things keep coming up during my research and I thought I would share.
The first is a netti pot. Folks swear by those things.
The second is a new procedure called balloon sinuplasty. I have heard/read/seen lots about it, not sure at all if it applies in your case.
Just thought I'd share. I hope you find the right solution for you.

[reliefless]

Just an update...

I have an appointment this Tuesday with the best allergist I could find in the Sacramento area. I told the receptionist I wanted every test under the sun. I'm on the second day of my "no meds starting five days prior" stretch. I don't think it really matters that much though because meds (aside from Afrin) haven't helped me anyway.

I was at Starbucks the other day and there was a magazine that had "Sacramento's top doctors/specialists" racked and stacked. To my delight guess who was the #1 rated allergist...!

I will post another update after my appointment.

[friggy]

If your problem was indeed a sinus infection, the allergy drugs might not work, and saline rinses only work in the lower sinuses, because of gravity.  I developed a Sinus flush which is basically a saline rinse that defeats gravity.

http://www.medhelp.org/user_journals/show/2322
The Flip-Turn Sinus Flush is mildly risky, because you have to bend over to do it, preferably in a shower, but you can also do it outside on soft ground.

However, do not try it until you have visited your new allergist, and taken all of his or her advice.  I had the best allergist in my state, they are good people to know, and I don't like to take business away from doctors, except sinus surgeries for infections.

[reliefless]

So I went to see my allergist last Tuesday and my symptoms since then have gotten, I would say without exaggeration, 95% better.

Coincidentally I was at Starbucks the other day and they had a "Sacramento's Top Doctors" magazine. I took a look and my allergist was #1 in his specialties - Allergy & Immunology, Pulmonology, & Asthma. They did about 50 skin tests on my back and everything was negative. Then they did the arm test and found a bunch of positives. It is ridiculous stuff that is unavoidable like trees, dust, pollen, etc. Another test they did was a lung capacity test and I was at 70%. He gave me a 15 minute breathing vapor mist treatment and my throughput increased 20%. He basically diagnosed me with allergies and resulting sinusitis and asthma. This is the medicine he put me on...

2 pumps of symbicort 2x daily
2 tabs of 600mg zyflo 2x daily
Sinus rinse followed by 2 sprays of Nasonex and Astepro in each nostril 2x daily
30 mg of prednisone 2x daily for 4 days then 30 mg of prednisone 1x daily for 3 days
Ventolin for rescue inhaler needs

He also had me get a chest xray which he will be going over with me tomorrow at my follow up appointment. They are cooking some up and I start in two weeks. They are also going to do bloodwork to check for any other allergies they may have not detected with the skin tests.

I thought this info would be helpful for someone out there! I would not wish sinus/allergy/asthma symptoms like the ones I have/had on my worst enemy!

[reliefless]

Edit above...

"They are cooking up some allergy shots and I start in two weeks."