Wednesday, March 11, 2015

Be your own advocate

(via)

You can imagine when you're in the throes of dealing with something for three months, your mind goes many places.  I'm still going through it, I'm not back to normal yet but I'm doing all I can to get there naturally.

As I went into this whole thing, surgery was never my intent.  The more research I did, the more I kept finding stories of people who had it and said it either did nothing for them, they took years to heal from a surgery docs claim takes a week to recover from or they had false hope in feeling better only to have their issues come back months to a year or so later and the surgery was a waste.  I was convinced I wanted no part in this.

A few weeks ago, I saw a friend of a friend died young.  I tried to see if there was a cause of death because when someone dies in their mid-30's there are usually a few things that come to mind.  I forgot about it and the day I was looking up information on sinus surgery, another notice popped up they were doing a memorial for the person so I looked up their obituary.  It said they passed due to complications of "empty nose syndrome."  I never heard of this and I began freaking out thinking "holy crap, is this what I have!?"  What I found was actually more horrifying.  This syndrome is completely caused by sinus surgery.  It can be caused by deviated septum surgery, reduction in turbinates and generally just doing what most consider 'routine' sinus surgery.  It can happen immediately or it can happen years after the surgery as things start to just naturally degrade.  The condition is constant dryness, pain and is debilitating and the "complication" is suicide.  This is a condition that cannot be reversed, there is no cure, no relief and the things the Mr found were God fearing people who didn't believe in suicide talking about doing it because they couldn't take it anymore.  A friend of mine confirmed this was what happened to this person.  I felt like I was meant to see that.  It was God's way of putting that info in my path so I could make an informed decision.  The Mr strongly felt that way as well.

When I got my CT scan, all I could think about is "what if there is something in there they have to remove and I have no choice?"  This is why I freaked hard over the weekend.  There was much relief in seeing perfectly healthy looking sinuses.  Then my ENT started talking about my deviated septum (SLIGHTLY mind you) and my "large turbinates" kind of leaving the door open for me to say "well what can we do to take care of those?"  I said "I've never had symptoms, I'm fine."  He brushed it off as no big deal and said I've probably had it all my life and if there's no problems then no need to bother with anything.

See, here's the thing, regardless of my feelings on the surgery, this is a new to me doctor...and I didn't like him.  Not that he wasn't nice but we both felt like "how did this guy get through med school, he's kind of a dolt."  I'm not saying that to be mean but when you're dealing with a guy who doesn't seem like the brightest crayon in the box, you don't want him doing more than a nose scope and writing a script.

The other big takeaway?  Don't blindly take meds that doctors prescribe without doing serious research on them first.  Because we've been fed by the media that things like OTC steroid nasal sprays are taken by everyone with allergies, they must be safe.  Well, when my vision started going wonky on me the last week of the spray, I looked online to see if the spray could be the culprit.  Um yeah, what I found was unsettling.  Not only did some people have serious eye issues but some lost their sense of taste and smell permanently.  Many of them went along just fine for the first month or two and then the problems started and it was too late.  I called the pharmacist as the docs office was closed, told her what issues I was having and she said I didn't have to taper and stop taking it immediately.  The actual insert in the medicine way far down tells you to consistently see your eye doctor because it can cause cataracts, glaucoma and other eye issues in perfectly healthy people.  I'm sorry but I'm not willing to risk my eyesight so that I can have perfectly open sinuses by a nose so dry it's like the desert and I can feel every breath I take in addition to the other awesome side effects.

I have a friend training to be a nurse and she told us about this documentary they had to watch last week called Escape Fire.  We haven't seen the movie but the trailer alone is terrifying when you think this is what goes on in the industry we're told to trust with our lives.  Pay particular attention to when they talk about stents and cost and how much time doctors are allowed to spend with their patients.  Something needs to be done...people need to be held accountable to change this system.  Look at other countries and we're the only ones run like this.  Yes, other countries systems have their problems but nothing like it is here.

Look, I'm not some alarmist.  I'm not saying if you've already had sinus surgery you're going to have problems in the future or that all sinus surgeries are unnecessary or all medicines are not beneficial.  I'm also not saying that everyone in the medical industry is out to make a buck or that you shouldn't turn to them in times of illness.  What I am saying is we typically do more research reading reviews when buying a new vacuum than we do before taking a medicine or considering a surgical procedure just because our doctor says it's what we need.  I've got news, the medical industry is just that...an industry.  And these poor doctors who went to school to help people are now being urged to perform unnecessary surgeries and prescribe meds to get kickbacks.  Yes, doctors typically know more than we do but sometimes I wonder.  If I'd followed Dr. Awkward's advice Monday about how to fix my dry nose, he'd have me "snort Vaseline" to keep hydrated.  Oh, you mean the petroleum based product that has been shown to cause lipoid pneumonia in rare cases?  By the way, the eye problems I was having on the nasal spray was listed as a 'rare' side effect too.  As I sit here typing this, I'm listening to a commercial where a medicine that reduces nerve pain has 23 side effects that they're required to tell you about in the ad.  I guarantee there are more in the insert of the medication.

My point in writing all of this is to bring awareness in areas I know I didn't have awareness on even two weeks ago.  Also to encourage people to not jump blindly into treatments and recommendations before doing all of your research.  Your doctor can be nice and you may even trust them but they can't read everything and can't be expected to read health forums where people report problems with the products they blindly prescribe.  In the end, the only person that has your best interest at heart is you.

Do you research before going into doctor appointments?  Do you research before taking medications or only when something feels off?

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6 comments:

  1. Truer words have not been spoken. I firmly believe that God wanted you to find this out before it was too late. That is a scary situation and hopefully you are passing this info along to someone else who can be spared as well.

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    1. You and I unfortunately know too well what happens when you trust doctors who are not happy with people looking up things on the internet. Your dad paid with his life on something that was 90% curable if caught early. Ever since then, I have only applied this to something more serious but after this and everything I've learned, I will never take any "routine" doctors visit or medicine the same again.

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  2. I do research new meds, but I usually follow my doctors' recommendations. Fortunately I have doctors that I like and trust so that makes it a little easier.

    The boy has asthma and before he was diagnosed we were in the ER 3 times in 2 months, twice by ambulance. It was awful and scary. We finally got him in to see an asthma and allergy specialist who got him diagnosed, treated a persistent sinus/ear/lung infection that had just kept coming back and creating problems, and then gave him a medicine regime to keep the asthma under control. In the last 5 years since then we've only had one ER visit. Nasal steroids (first Flonase and now Nasacort) are a part of this, and although the side effects can be scary I've talked at length with the doctor and feel that the benefits outweigh the potential risks. It's not the right decision for everyone, and each individual should absolutely do their own research and make their own decision, but for us it is. When he is off the spray his asthma symptoms come back, when he takes the spray they are generally controlled. I hope as he gets older he will be able to stop taking asthma meds altogether, but for now his reality is having to take meds to control it.

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    1. I'm glad you have good doctors on your side. Absolutely choose what med is best for your little guy and what helps him the most. I hope he can eventually get to a point where he can wean off of meds as he gets older.

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  3. We had someone at the hospital have a C-section and they left the sponges in her! Apparently it happens far more than the public realizes. Quite scary. After my horrible experience with a psychotic doctor who is no longer allowed to practice in this state, I've learned to not take things at face value and research them. I'm also very cautious of what sites I go on because often times websites are in cahoots with certain drug companies, so I go to neutral sites when it comes to that.

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  4. I'm a pharmacist of 26 yrs. I turn to my Essential oils now. I started out skeptical and am now just amazed. There's a lot of scientific research out there even supported by the National Institute of Health grants. Be cautious of ALL medications, both Rx and non Rx. Second guess and research everything!

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