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Old 11-21-2012, 08:31 PM   #1
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Help - Severe, Chronic Sinusitis, my story

Hi everyone. I'm new here as I don't know where else to turn, and I have been reading this board on and off for advice since my sinus problems began. If you have any time, interest in hearing my story I beg you to read on - I am desperate.

I am from Dayton OH, one of the outdoor allergy capitals of the world, I am told. I moved to Chicago IL two weeks ago.

My sinus problems began roughly 1 and a half year ago... the last year or so has been a blur of depression, sickness, so unfortunately I cant 100% accurately recall when the symptoms began. But one thing I always remember is it started in Fall, maybe of course they started that summer, but the main symptoms took hold in Fall-Winter of 2010 if i remember correctly. So about 1 and a half years ago.

For the first 10 years of my life, I lived in Michigan, Ohio, and Texas. I had my first allergy testing done around 10 years of age - I think. So I've been told all my life by my parents that I'm allergic to "everything", or that I have many indoor / outdoor allergies. Despite this, and despite living in Dayton OH, an allergy capital of the world, for the last 12 years, I do not recall having any major allergy episodes or symptoms, runny nose, sinus problems, dry eyes, skin irritations, etc. or even taking many allergy medications. I had only been tested once for allergies before this most recent bout of problems.

Another problem I'm having now is I'm not even exactly sure what all my allergens are - I have a vague knowledge collected from memory of the allergy, I can't even explain my lack of knowledge in this area despite being tested. I have only had the basic tests done - in my last ENT visit I learned there are more "advanced" testing that can be done, but I havn't done these yet.

Allergens include:

Mild: Pet Dander

Moderate: Various outdoor such asPollen, Ragweed, etc and various indoor such as Dust, etc

Severe: Mold (dont know what type)

I've been camping, spend alot of time out doors hiking, traveling, etc, tried drugs, drank, never smoked, played sports, done all sorts of things I probably shouldn't have and gotten away without any negative impact on my health for many years before this recent bout began. Basically living a healthy life. Again, spent my formative years in a suburb of Dayton OH an allergy capital of world.

About 5 years ago my life really started unraveling. One thing I want to not is I have always struggled with mental health and the stress that comes with it. I am not sure of the level of effect this has had on my sinus problems.

So around 2 years ago I found myself, turning 21, spending alot of time at home (my parents home) having never moved out and lived there for 12 years straight, the last couple of years commuting to community college and working, but not doing very much of either. Living at home, growing older, having fewer friends, reflecting on my past I found myself being drawn into a a deeper depression than I've usually experienced. The reason this is important is that I believe there is something in my home that I am allergic to that has caused this.

Then in the fall of 2010, as if out of NOWHERE, my sinus hell began. My sinuses became clogged with thick white mucous. I had severe post nasal drip 24/7, the accompanying bad breath, loss of smell, my upper airways / sinuses have become clogged / swollen / infected so I have trouble breathing, runny nose every day, became fatigued, eyes face and ears began to hurt. Everything just became more difficult after that, I felt sick most of the time, and ever since then I spend most of my time spitting up this awful mucous and blowing my nose. I mean that literally. My number one physical activity is being hunched over a sink, blowing my nose as hard as I can, and spitting up as much mucous as I can stand to get out. Sometimes the PND would even prevent me from sleeping.

So I'm spending most of my time alone, in my room, feeling sick, clearing my throat into buckets, bags, cups, bowls etc, trying to figure out what the hell is going on. I have never experienced anything like this. At one point it was so bad I would just lay around spitting. I know this is extremely disgusting and I am horribly ashamed to admit it - but it felt like the room was toxic. I couldnt do anything.

I go to an allergist. This is my second test in 12 years or so, yet with all I've been going through, I don't even recall the exact results of this test. The only thing that sticks out is they tell me I'm allergic to both indooor/outdoor, with extreme allergy to mold. I believe this is important somehow.

I attempt to explain my symptoms to the allergist, I explain that I already take various antihistamines and decongestants. But of course, he has little help to offer. He explains that all he can do is identify the source of my allergies and put me on a regimen of medications / allergy shots that he thinks might work. So I start taking Zyrtec instead of the usual Allegra, Claritin, etc. I start taking a combined regimen of Zyrtec-D, Singulair and allergy shots. To be fair, I only try the allergy shots for a few weeks before giving up.

A couple months of this regimen later, symptoms are not improving, they feel like theyre getting worse, and my quality of life is deteriorating. I am stuck with this mucous like a monkey on my back and all the embarassment that goes with it. I basically have a light cold 24/7.

Then the sinus infections start. Out of commision for 2 days each sinus infection. Get about two before seeing the doctor and getting on anti biotics.

I finally see an ENT after recovering from the sinus infections. I can't even explain what took me so long to see an ENT, other than that my life has been a complete mess and I dont have much support from friends or family in my life.

ENT asks minimal questions, I struggle to explain my condition to him, he makes no reccomendations other than that I get a CAT scan. Get CAT scan, all of this takes weeks and weeks of course. He says he sees "inflammation" in sinus areas and tells me that I have a "slightly" deviated septum. I still have n ****** clue what this means. He reccomends surgery for the deviated septum. Reccomends nothing to treat the inflamed sinus cavities. This guy is eager to cut me open like a pinata as a kid at a birthday party, and offers me no advice or information other than that.

Being in a daze and desperate, I have the surgery, as he says fixing the septum / reducing the turbinates will help manage my other symptoms. I am not sure if I should be doing this but again I agree as it is the only "solution" that I have heard of. Hindsight is 20/20.

Cut to post op - it is hell, as everyone knows, I am in extreme pain and cannot breathe at all, blow my nose too much probably, get an insane amount of crap and scarring stuck up there, will only see me every 2 weeks to remove scarring despite the fact that I am COMPLETELY blocked lost all sense of smell and ability to breathe.

Cut to NOW - almost 4 months later. The recovery was long, painful and slowed down my life even more. Today I am STILL blowing blood, mucous, and scar tissue out of my nose - I am unaware of any cases of septoplasty where the scar tissue has lasted this long. Another question I need answered.

What I'm getting at here is I still have all the symptoms I had pre-surgery, plus a metric ton of blood mucous and scar tissue stuck up my nose that I spend every waking minute I'm not at work washing my sinuses, breathing in steam, drinking tea / water, taking medication, and trying to blow this crap out of nose. Still spitting out hacking and spitting constantly, still cant breathe / feel my nose very well, obviously. I am completely in the dark as to whether this surgery has helped or hurt me. I am constantly scared that it has made things worse and that something bad is going to happen - I'll have an underlying disease, sprout nasal polyps, I don't even know what could get worse.

I moved out of my parents house as I believed there was something there that Im allergic to and am trying to focus on 100% on curing this disease, but I am struggling, and don't know what my next move is. I want to find a new doctor as the ENT that performed my surgery was just... an awful person, I think, and explain all of this too him, see if there is any testing that can be done to evaluate the effect of the surgery, etc. I want to find another allergy specialist as well and do the in-depth allergy testing I havn't had yet.

I just want to know if theres anything else I can do besides isolated myself from allergies, taking medicine, being healthy and praying to God that things get better.

If anyone out there has any advice, information, anything you can tell me based the information laid out above, please help me. And if you've actually read all of this insanity I just want to thank you for listening.

-Altered Fate

Last edited by Administrator; 11-26-2012 at 09:33 PM.

 
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Old 11-22-2012, 12:41 PM   #2
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Re: Help - Severe, Chronic Sinusitis, my story

There's a pretty standard regimen for dealing with chronic sinus problems, but you really need to find a doctor who's experienced in treating chronic sinus disease (most office based ENTs aren't). Your best bet is to find a doctor at a teaching hospital like Northwestern or the University of Chicago who specializes in treating people with chronic sinus disease (and who has an allergist that he/she works with) - Northwestern actually has a "Sinus and Allergy Center" so that's probably where you should start.

The standard regimen is:

-Antihistamines (with a decongestant or you can take pseudoephedrine separately)
-Singulair
-A short course of oral steroids to reduce the inflammation in your sinuses followed by daily use of a steroid nasal spray like RhinocortAQ or Flonase
-Daily saline irrigation with a NeilMed SinusRinse bottle (available at CVS or Walgreens)
-Mucinex to thin out the sinus drainage (available at CVS/Walgreens without a prescription)
-Allergy shots

Allergy shots take time to work so you need to give them a year before you give up on them.

Because you mention "hacking and spitting" you may also want to talk to the doctor about the possibility that acid reflux is contributing to your symptoms. Reflux - including a form of reflux called LPR that has very few of the traditional symptoms of reflux - can cause sinus inflammation that doesn't respond well to antihistamines.

It definitely takes time to get sinus disease under control but it doesn't sound like surgery is what you need, just a good doctor who's willing to work with you to get the underlying cause of your sinus inflammation under control, and it may take a few false starts before you get it sorted out - just don't give up hope, it will get better if you hang in there.

 
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Old 01-02-2013, 04:59 PM   #3
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AlteredFate HB User
Re: Help - Severe, Chronic Sinusitis, my story

GCSJR,

Thank you so much for responding. I've seen your messages on other threads and you seem to be very knowledgeable in this area. I can't thank you enough for responding.

I actually live in the Chicago area now, and its funny that you mention Northwestern because I've been reccomended a couple of doctors there, but am now considering the NW Sinus Center based on your rec.

I was wondering if you could help with another question.

I had septoplasty and turbinate reduction done 3 months ago and have been worse off ever since.

About a month ago I started getting blood clots in my nose, every morning. I can hardly breathe through my nose and my ears are in pain. But it's not just blood, it's mucus, blood and what I think might be scar tissue. Huge chunks of this stuff lodged way up in my nose and I can only blow it out in the morning. But then I've read that blowing my nose so much is what's causing the bleeding. I literally blow this stuff out every morning for the past month or two. What can I do?

I also live in a rather unclean apartment as far as the air quality, and I seem to be very sensitive to things like dry heat and air quality.

I know this is a lot of information anything you can tell me would help...

 
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Old 01-03-2013, 06:32 AM   #4
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Re: Help - Severe, Chronic Sinusitis, my story

Most of what you're describing could be the result of dryness (which is common in winter) exacerbated by your recent surgery which had opened up your nasal passages making them even more vulnerable. I would recommend that you sleep with a humidifier in your bedroom, continue to irrigate with a SinusRinse bottle a couple of times a day and try one (or more) of the nasal moisturizing sprays that are available - NeilMed has one called Nasogel that seems to work pretty well.

I suspect that if you can get the dryness under control you'll notice that the blood clots start to diminish right away.

 
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Old 01-04-2013, 11:49 PM   #5
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Re: Help - Severe, Chronic Sinusitis, my story

GCSJR,

Dryness is definitely an issue...last winter, before my surgery, I forsr started battling the dryness issue really bad. I wish I could recall what it was like better but my nose health pre and post surgery is like night and day. Long story short I was getting long bouts of bleeding with no cause.

It seems to me that to have permanent bleeding something must be causing extreme dryness besides just the environment.

My last question is... How can I have so much scar tissue, lasting so long and completely blocking my nose when I haven't read anything about it lasting this long? And why Won't it go away? I'm getting very scared I might need some form of revision surgery to unblock my upper nose... If its even possible. Is any of this making sense?

 
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