Day 21 of Cushing's Awareness: Post op taste and smell issues.

I am still dealing with this lovely infection inside of my nose and sinuses.  I went to the ENT on Thursday and they cleaned out as much gunk and scabbing as they could get. The instrument was buried so far inside of my nose that even the handles were almost hidden.  Thankfully they numb you up otherwise I would have probably lost it.  They finally took samples and are sending them off to find out exactly what we are dealing with.  He is hoping that since I now have an anti-fungal to add to the mix of antibiotics I use in my nasal nebulizer that it might clear up everything without surgery.

I am still smelling that cigarette smoke smell, but it has started to shift into something new as well.  I now cannot smell certain things without wanting to gag.  I use this apple scented Dawn dish soap to clean my nebulizer parts with and then all of a sudden it started smelling extremely foul to me.  Then I noticed that I was smelling this even when I wasn't washing the parts.  Then yesterday I made myself a salad and the salad dressing tasted like perfume.  Today I went to take a bite of a banana and it was like it had been soaked in the most awful perfume.  I immediately spit it out in the garbage.  It was one thing to be dealing with just a scent, but now it's affecting my taste.  The same thing happened when I tried to take a sip of diet coke today as well.  The ENT thinks that the smoke smell could be from the infection, but now it's shifting and starting to make me think there is something much more serious going on.

I googled information about the issues I have been having and came across this article on msnbc.
"By all means, a phantom smell could mean something serious," says the psychiatrist and nationally recognized smell and taste expert. "It absolutely needs to be evaluated. It could be a tumor – that's on the top of your list of things to rule out – but it could also be a cyst or some infectious agent housed in the area of the brain where the smell is processed."
Brief episodes of phantom smells or phantosmia – smelling something that's not there – can be triggered by temporal lobe seizures, epilepsy, or head trauma. Phantosmia is also associated with Alzheimer's and occasionally with the onset of a migraine.
But it's not typically something sweet that's conjured up by the brain.
"It's usually more unpleasant stuff or odors that are hard to describe," says Hirsch. "People will say it's chemical-like or talk about a burning smell."
Common olfactory hallucinations include lots of icky odors. Sufferers report smelling hydrogen sulfide (rotten eggs), bad perfume, garbage, a gas leak, wet dog, pungent body odor or spoiled fish or feces. The brain may trigger such sickening odors instead of agreeable ones because humans learned very early to avoid noxious smells for survival.
"I think a larger area of the brain is represented by bad smells than good smells," says Hirsch. "And they also may be easier to 'fire off.'"  

I am nervous because I have had an infection brewing in there and a fairly easy way for an infection to travel into my brain after having brain surgery.  All I know is I will be contacting the ENT on Monday and most likely trying to contact my Neurosurgeon to get his opinion and set up my post operative MRI.  I was told to wait until the sinus infection had been cleared out some, but since I'm having Cushing's symptoms and now this odd smell and taste issue, I think it may be time to get an image of whatever is going on in that noggin of mine.

I remember a day many, many years ago when I thought once I got diagnosed I would have my surgery and things would just miraculously get better in a very short amount of time.  Ah, the days of being naive.  I have sure learned a lot since then and I still continue to learn more about this disease every day.

Day fifteen of Cushing's Awareness: The infection that wont't die!

I really hope that one of these days I will be able to stop writing about my story and just blog about how life is good and I'm cured.  It's a dream, but I believe it's an attainable one.  I just have to keep as positive as I can and always listen to my body.  I left off somewhere in mid February of this year.  I had just finished a round of Cipro for the nasty smell inside my nose.  It seemed to help, but within days of being off of the antibiotics it returned with a vengeance.  It was even worse than before.  The biggest issue is that after this surgery and especially after an artery bleed I was not allowed to blow my nose or anything in fear of creating a CSF (cerebral spinal fluid) leak.  Most people are able to start using a sinus rinse around three weeks post op, I was not able to do one yet because my artery bleed had pushed my recovery back by almost two weeks.

I called MD Anderson yet again, and once again they called in a prescription for Biaxin this time.  I told Dr. McCutcheon's assistant that if this didn't clear it up I would be seeking consult with an ENT surgeon here locally.  I started the prescription and noticed the smell seemed to ease up a little, but it wasn't leaving.  I can't even fully describe just how foul this smell was.  I was fully aware that my sinuses were full of blood from the artery bleed and other gunk from the surgery itself, but it really had no way to properly drain so it was just sitting there becoming this nasty cesspool of infection.  I would often feel chunks of stuff getting stuck in my throat.  Everyone had warned me that after this surgery expect a huge scab of sorts to make it's way down your throat.  You either have to swallow it or expel it out of your mouth or you will gag on it.  Well, this one evening I was clearing my throat repeatedly and could actually feel something restricting my air flow in my right nostril.  I tried to clear it out and all of a sudden it rocketed out of my sinuses and into my throat.  I choked and gagged and out came the largest and most nasty dried blood clot covered in green mucus.  I dry heaved for a good minute after that.  It was absolutely the most disgusting thing on earth, but immediately the smell seemed to ease up inside my nose.  This clot was the size of my thumb.  I was relieved thinking that perhaps now all this infection stuff would clear up on it's own.  Boy was I wrong.  Within a day the smell returned and continued to get worse.

I researched local ENT's and decided on one that had great reviews and studied at Mayo Clinic.  I called on a Friday and they told me they would fit me in on Monday.  I was scared going in because I knew they were going to have to stick a scope inside of my nose to investigate what was going on.  The Doctor was absolutely wonderful, extremely knowledgeable and competent.  He numbed up my nose and took a look.  He said it was still extremely raw and that I had lots of scabbing and gunk stuck in there.  He pulled out this nasty, nasty scab and immediately the smell was gone!!  He told me to just continue to let it heal and to come back in roughly three weeks.  He also said that in maybe two to three weeks I could begin using a Neilmed Sinus rinse, but he didn't feel my recovery was far enough along yet due to the bleed.  I noticed the smell starting to return within a week.  I waited roughly two weeks and started using the sinus rinse and doing it oh so gently.  He told me to take it very easy as to not tick off the artery that had been agitated.  I was able to clear out a lot of scabbing and green gunk, but the smell would still remain.  It was starting to become more foul than before.  It was to the point that it would actually make me gag.  I called them back and they got me in the same day.  The Doctor numbed me up and took a look and said that I would need to be cleaned out in the procedure room.  I was nervous, but considering the previous time he went in I barely felt anything I figured this would go okay as well.

The Doctor numbed me up pretty good and had me go to the procedure room where they had a big monitor on the wall.  He used a scope and an alligator grasper forcep.  I knew those instruments quite well as I used to sterilize them every day at work.  He went in and started pulling out nasty scabs and other gunk that was inside of there.  He then said there was an area with exposed bone and that he needed to cut the bone as to allow the skin inside my nose to heal over it.  It was literally just exposed.  He gets a grasper that is able to cut bone and goes in and starts clipping at the bone while I'm wide awake, not restrained and having to hold still.  You really have no idea how loud that noise is unless it's happening inside your face.  Thankfully that part didn't hurt, but he had to go even further down into my nose and it almost felt like it was in my throat.  He was tugging on something large and it was no longer numb there.  Tears started spilling from my right eye from the pain.  It was horribly painful, but I was as still as a statue.  Finally he felt confident he had gotten all the scabbing off that was keeping the infection underneath and that I should now start healing up nicely.  He told me to continue the rinses daily, but very gently.  I experienced a bit of bleeding that day, and also quite a bit of pain.

Things seemed to be a little bit better, but yet again that smell returned.  I once again had to make an appointment and this time I saw his assistant since the Doctor wasn't available.  A really lovely guy and of course I get the usual "I've never met someone with Cushing's before."  I told him I was tired of this infection jazz and that we really needed to get to the bottom of it.  I suggested nebulized antibiotics and possibly getting a swab of whatever was in there to see if it was MRSA.  He agreed that at this point nebulized antibiotics were a must.  They never did do a swab, but I got set up to get a nasal nebulizer that included two types of liquid antibiotics plus a steroid for inflammation.  He also said that I would need to be on these for at least 30 days and then we would need to get a CT done of my sinuses to see if there is some type of permanent damage that has been done or to see if my sinuses are no longer draining on their own.  They will also want a brain MRI around that time to check some other issues with the sinuses, plus I  have to get my pituitary rechecked for any residual tumor or possible tumor growth.

I am pretty sure what I am dealing with is indeed MRSA.  Anything else would have died off by now.  Since starting the nebulized antibiotics the smell has cleared up and seems to be doing a lot better, but a week or so after starting them I started bleeding from my nose.  Once again I had to be seen.  They feel it was just extremely raw still and that perhaps the steroids in the nebulizer were creating more of an issue.  I now rotate the steroids every other day, but within the past week have developed another new and alarming issue.  I am smelling cigarette smoke non-stop.  No one is smoking.  I do not smoke, but it literally smells like there is a lit cigarette under my nose.  It is driving me absolutely crazy.  I called my Doctor this week and he feels it could be several things.  The infection may possibly be getting better, there is some type of nerve damage, or honestly...we don't know.  He said if it persists over the weekend to call and he will look in there.  I am just so ready for all of this mess to get better.  I am also taking another oral antibiotic called Bactrim DS.  That makes four oral antibiotics total, nasal nebulized antibiotics and the end still isn't in sight.

I really have a feeling this is all going to result in a sinus surgery.  It's one thing to have a rare disease, but now I have some rare infection and issue inside my sinuses.  I would love for once in my life to just be simple and uncomplicated.