Catch-Up Mondays: I just want a new nose – revisited

I originally posted this on April 7, 2013.  My sinuses have been one of my biggest nightmares since the mold first decided to take up housekeeping in them.  Surprising (knock on wood) after all the exposures I received while being with my dad my sinuses have remained healthy while the rest of my body is still protesting.

Ok – we all at some point we all wish we could change something about ourselves.  I have never really considered changing my nose although it isn’t a perfect nose.

I am not talking about wanting a new nose because of the way mine looks.  I am talking about exchanging it for a healthy nose, one that didn’t get invaded by aspergillus from my sick building at work and one that doesn’t get infected more often than I would like.  While I am grateful the infections are no longer defined as osteomyelitis (bone infection) requiring IV antibiotics, they are painful and frustrating none the less.

At one point I joked about getting a silver nose like the villain in the movie Cat Ballou.  Thinking, mold couldn’t grow in the silver.

Or maybe I could exchange my nose for one of these below.  They are all nice looking noses if they didn’t come infected with mold.

Or maybe I would try to see about getting Elmo’s nose.

A friend back in the beginning used to joke with me about how to get rid of the fungal infection.  Her husband was an AG teacher and they also lived on a ranch.  She told me she would just go and get some Dursban and pour it into my sinuses.  Of course we were just joking and whenever I complained about my sinuses she would offer to run and get some and then start laughing.  Can you imagine putting that in your sinuses?  Not me.

What body part would you like new but not for cosmetic reasons?   If I chose cosmetic reasons, I would be changing out a lot of parts.

Catch Up Mondays – Aspergillus Flavus – revisited

I have posted this before but am including it in my “Catch Up Mondays” because it is important for those just learning about fungal infections and/or bone infections.  This was first posted in May 2012.

Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus.  I was placed on an antifungal.  There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again.  I had just had the PICC line for the last IV removed only six weeks before.  Everyone kept asking if I knew of anyone else like me and I didn’t.  After I started searching on the internet I found a group online through yahoo groups.  Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was.  To visit the aspergillus support group or the fungal infection trust:  www.aspergillus.org.uk/newpatients   www.fungalinfectiontrust.org

In my book I write:

The more I read, the more terrified I became.  Aspergillus is not something that just goes away on its own.  It is extremely difficult to get rid of.  There was more than one form of Aspergillosis.  ABPA (acute bronco pulmonary Aspergillosis) affects the lung.  There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body).  The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream).  The invasive form usually results in death.  Those were not words I needed to read especially in the depressed state I was in.

Every time I saw my ENT I asked, “Are you sure it isn’t invasive?”  Each time he reassured me that he did not think so.   I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick.  While I do have to deal with this, I thank God every day that it wasn’t the invasive form.

I just want a new nose!

Ok – we all at some point we all wish we could change something about ourselves.  I have never really considered changing my nose although it isn’t a perfect nose.

I am not talking about wanting a new nose because of the way mine looks.  I am talking about exchanging it for a healthy nose, one that didn’t get invaded by aspergillus from my sick building at work and one that doesn’t get infected more often than I would like.  While I am grateful the infections are no longer defined as osteomyelitis (bone infection) requiring IV antibiotics, they are painful and frustrating none the less.

At one point I joked about getting a silver nose like the villain in the movie Cat Ballou.  Thinking, mold couldn’t grow in the silver.

Or maybe I could exchange my nose for one of these below.  They are all nice looking noses if they didn’t come infected with mold.

Or maybe I would try to see about getting Elmo’s nose.

A friend back in the beginning used to joke with me about how to get rid of the fungal infection.  Her husband was an AG teacher and they also lived on a ranch.  She told me she would just go and get some Dursban and pour it into my sinuses.  Of course we were just joking and whenever I complained about my sinuses she would offer to run and get some and then start laughing.  Can you imagine putting that in your sinuses?  Not me.

What body part would you like new but not for cosmetic reasons?   If I chose cosmetic reasons, I would be changing out a lot of parts.

Nothing was working!

I had endured three sinus surgeries and had just had my fourth on June 12, 2001.  In the time of about twenty months I had gone through four sinus surgeries and was still dealing with pain and constant infections.  The fourth surgery was from a doctor in Southern California.  As with most of my doctors I communicated a lot via fax messages.  It was easier for me to get my words, questions, and frustrations out on paper.  I didn’t have to rely on the doctor being available and he could simply reply with a fax or a phone call at his convenience.

On June 25, 2001 I faxed my newest doctor.  (Excerpt from my book)

I am still running the fever and have pain, particularly in the left sinus area.  I am trying to get a handle on what is causing this as quickly as I can.  I take a pain pill a half hour before I go to bed so that I can sleep and wake up hurting so bad that I take pain pill so that I can function.  I am due to return to work Aug. 1 after being on leave of absence since March.  I still can’t believe it has been almost two years since I first got sick.  I feel like I am not any closer to a solution than I was back then. I am frustrated that I don’t seem to respond to the surgeries, IV therapies, and other treatments I have endured. Every time we think we have the answer, it doesn’t work, or I become ill again a short time later.  Maybe I need a total body scan.  If Dr. D—-agrees to the bone scan, I have listed the hospitals that I could go to….

On June 27th I wrote another lengthy note and faxed it as well.  I had enumerated 10 things.  From my book I list a few of those things.

3. I had an infectious disease doctor recommend Amphotericin through IV…My allergist isn’t too sure about it.  I am ready for the ‘Big Guns’ at this point…5. I am at the ‘BREAKING POINT!’  Thank GOD for the Remeron…9. I need assurances that things are going to get better.  Nobody can really understand what this has been like unless they have lived it….10. HELP! HELP! HELP!

When I said I was ready for the ‘Big Guns’, I meant that I was willing to risk everything and try the Amphotericin-B (what doctors referred to Ampho-Terrible).  It was such a bad drug and had to be administered and monitored in the hospital.  Fortunately for me, I never had to take it through an IV.  I also mentioned Remeron in my second fax to the doctor.  Remeron is an anti-depressant that my doctor had put me on almost a year earlier when I was having such a difficult time dealing with all the illnesses that kept bombarding my poor body.

How do you know if a sinus infection is osteomyelitis?

I have had osteomyelitis in the sinus on more than one occasion   The pain was so intense and the typical antibiotics were not making me well.  My ENT consulted a colleague who suggested that I have a Gallium Scan.  The colleague thought that I might have osteomyelitis (an infection in the bone).  This was my ENT’s first encounter with someone who possibly could have osteomyelitis.  I was directed to the x-ray department of our local hospital to have the test done.

A Gallium Scan is a test using radioactive material called gallium to look for swelling, infection or cancer in the body.  The scan is a type of nuclear medical exam.  

I arrived at the lab and was injected with  radioactive gallium into a vein in my arm.  I was told that the gallium would travel through my blood stream and if I had a bone infection it would collect in the bone.  I was instructed to go home and come back a few hours later to allow the gallium time to travel through the blood stream.  When I returned to the lab I was placed on a table and was instructed to lie still while a special camera able to detect gallium would see whether it had gathered in my sinuses.  The test took me about thirty minutes.  The result was that I did, indeed, have a bone infection in my sinuses.  The treatment was six weeks of IV antibiotics.

After six weeks of IV therapy I was once again sent to the lab.  The best way to determine if the infection was gone was to have a White Blood Cell Scan.  Again,  radioactive material was used. My blood was drawn and the white blood cells were isolated and tagged radioactively and re-injected into my arm.  A scan was done a day later to see if the radioactively tagged white blood cells settled in the sinuses.  While the test showed I was over the infection, I was uncertain because I still did not feel great and that little voice in my head said the battle wasn’t over.  I was so right!

The question of how you know if a sinus infection is osteomyelitis was a search question.  I think the Gallium Scan is probably the most definitive test from what I have read and is the test my doctor used.  CT Scans and MRI’s can be ordered but may not show the entire picture.  I would love to show you a picture of a Gallium Scan but don’t want to risk copyright infringement.  Just imagine a typical x-ray with a bright yellow glow.  The bright yellow glow is the radioactive gallium that pooled in my sinuses.

This is my experience with detecting whether or not my sinus infection was a typical infection or osteomyelitis of the sinus.  Only a medical practioner can make the determination of whether or not someone has osteomyelitis based on symptoms and tests that he or she chooses to prescribe.

Mold – trigeminal neuralgia

Mold and trigeminal neuralgia were put in the search engine today.  I have talked vaguely about my having trigeminal neuralgia.  For those not familiar with trigeminal neuralgia, it is a condition that affects the trigeminal nerve, one of the largest nerves in the head.  It is responsible for sending impulses of touch, pain, and pressure from the face, jaw, gums, forehead, and around the eyes.  Trigeminal neuralgia can feel like a sudden severe shock-like or stabbing pain on one side of the face.  These attacks can last several seconds and happen over and over throughout the day.  Some attacks can last months at a time.

I began developing trigeminal neuralgia as the bacterial and fungal infections in my sinuses continued bombarding me one right after the other.  I developed osteomyelitis (bone infection) in the sinus bone.  I had several surgeries to keep scar tissue and the infection cleared from the bone and the sinuses in general.  The pain was so intense.  I was on pain medication from surgery and it seemed to help.  I couldn’t stop the pain medication or I couldn’t function.  I needed a pain pill in order to stop the pain in the morning so I could get up and start my day and head to work.  I needed a pain pill sometimes in the middle of the day so I could focus on my job.  Lastly I needed a pain pill to numb myself enough to be able to try to sleep.  The pain was so intense that I felt like an ice pick was being jabbed into my left eye and twisted.  The pain would radiate down through my left maxillary sinus, my jaw and my left ear.

When my ENT thought I had been on pain medication too long, he decided to try me on Neurontin (Gabapentin).  It took a large dose to calm the nerves down.  I think the maximum dose was 1800 mg. and I was on 1200 mg.  The face and eye pain calmed down but at the expense of the side effects of the Neurontin.  The side effects for me were dizziness.  I was so dizzy that I was afraid to drive and once walked several miles to and from his office to avoid driving and the possibility of an accident.

As time as moved and we have been able to keep my sinuses in better order, the neuralgia is less frequent.  An exposure to a chemical that I might come into contact with will cause the nasal passages to swell, produce large amounts of mucous and trigger the neuralgia and the pain.  I no longer do well on Neurontin or pain medication (probably from taking so much of it).  Now when it flares I just have to apply heat and rest and wait it out.  A sinus infection whether bacterial or fungal will also trigger the return of the symptoms.  We have to keep my antifungal treatment at a level that keeps the fungal infections from re-occuring as often.  I am including a picture of the trigeminal nerve to show how much of the left side of my face is affected when I have a flare-up.

Me in the beginning

I have been talking to you about how ill I was.  I have shared excerpts from my soon to be published book.  You have seen a picture of the me now – 12 years out from the beginning of my illness.  For you to understand how far I have come even though I am far from over this illness, I have decided to post this picture.  The picture was taken in February 2002 on the day I arrived at the Environmental Health Center in Dallas.  I was taking nebulized Amphotericin-B through my sinuses for a continuing fungal infection and possible osteomyelitis.  I knew I had lost weight and until later when I looked at this picture didn’t realize how skinny I was and how sick I truly looked.  I had been sick at this point for about 2 1/2 years.

Aspergillus Flavus

Shortly after my third sinus surgery on August 1, 2000 I received news that the culture from the surgery revealed Aspergillus Flavus.  I was placed on an antifungal.  There was still a possibility that I would have to start IV antibiotics for osteomyelitis (bone infection) in my sinuses again.  I had just had the PICC line for the last IV removed only six weeks before.  Everyone kept asking if I knew of anyone else like me and I didn’t.  After I started searching on the internet I found a group online through yahoo groups.  Not only did I find the site and a wonderful woman to communicate with who had the same fungal sinus condition, I found a great support system made up of wonderful and caring people who were suffering like I was.  To visit the aspergillus support group or the fungal infection trust:  www.aspergillus.org.uk/newpatients   www.fungalinfectiontrust.org

In my book I write:

The more I read, the more terrified I became.  Aspergillus is not something that just goes away on its own.  It is extremely difficult to get rid of.  There was more than one form of Aspergillosis.  ABPA (acute bronco pulmonary Aspergillosis) affects the lung.  There was also the Allergic Fungal Aspergillosis (allergy to Aspergillus) as well as a colonizing form of Aspergillosis (Aspergillus spores colonize in a particular area of the body).  The worst form was invasive Aspergillosis (In this form, the Aspergillus spores get into the blood stream).  The invasive form usually results in death.  Those were not words I needed to read especially in the depressed state I was in.

Every time I saw my ENT I asked, “Are you sure it isn’t invasive?”  Each time he reassured me that he did not think so.   I am on antifungals pretty much all the time because if I stop, a flare up results and the fungus takes off again in my sinuses making me very sick.  While I do have to deal with this, I thank God every day that it wasn’t the invasive form.

Osteo What?

I had my first sinus surgery in November 1999 shortly after the attempt at aspirating my sinuses failed.  By January I was still sick and and getting black mucous from my sinuses that my doctor suspected could be fungus.  A second surgery was performed in March 2000 to try and alleviate all the pain I was having.  I continued to be sick and in pain.  By April things had gotten horribly bad.  From my book:

…I received a devastating phone call from Dr. Spitzer.  The news was not good.  He had received the results of the bone scan.  The scan showed I had osteomyelitis (an infection of the sinus bone) and I would have to take antibiotics intravenously for six weeks.  He had scheduled for a home health nurse to come to my home that night and start and IV…..After several attempts by the home nurse to place a line in my hand, she gave up…the nurse phoned my doctor and I was told to come in at 7:45 a.m. and he would place the IV line and I could take my first dose there…

The schedule for taking this antibiotic (Primaxin) was exceedingly difficult on me.  Taking Primaxin is like taking a chemo drug.  The IV schedule was three times a day for six weeks.  I lost sleep because of having to get up early just to get the medicine out of the refrigerator so I could take it an hour later and going to bed late because of my night time treatment.  I lost my appetite and began losing weight.  Depression came on me like a big black cloud.  Eventually I had to cut my work schedule to half days because I was too tired and depressed to work a full day.  Here I had only been working less than a year and had taken time off work for two sinus surgeries and shortened my work days.  The guilt I had for leaving my co-workers in such a mess just deepened my depression.  Even then I was confident that I was going to get well and had no idea the ride I was in for.