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I believe I have undiagnosed fungal sinusitis and fungal osteomyelitis (INVASIVE FUNGAL SINUSITIS)

Fungal infections in soft tissue can be cured with IV antifungals, however fungal bone infections can only be cured by removing the infected bone. For some strange reason no one in the medical community I have dealt with seems to think that my condition is anything serious or needs to be treated in an urgent matter.

I have received very little help from medical professionals, and without any serious diagnosis, I have not been able to use my disability insurance, and my health continues to deteriorate. I have had to move out of state, from Florida to live with family in Tennesee.

History of illness

Infection top/back of throat in January 2005

Within days infection spread to front of sinuses/eyes became sunken in

After months of discomfort lost sense of smell/realized there was a dry coating throughout entire sinuses

After realizing dry material coated sinuses, began gentle flushing with waterpik (without attachment)

"Cottage cheese" looking material originaly flushed out of sinuses

Infection originally consisted only 'dry material' growing on mucus membranes, which causes pain with excessively severe dryness, no to very little mucus.

3 severe exacerbations about 3 months apart during 2005.

Each exacerbation consisted of severe pain in face and sinuses with severe flu symptoms for 2 full weeks in duration.

Each time I would be in bed flat on my back for the whole 2 weeks. Then it would ease up, I could resume normally.

March 2006 another exacerbation (the 4th time), which has now been CHRONICLY ACUTE and is getting increasingly worse.

Symptoms

Dry *white material growing in sinsues.(feels like plaster sticking to sides of sinuses).

(White color - appears white, grayish in clear syrupy fluid when flushed out with waterpik)

Initially whiter in color, now with regular flushing more grayish mixed with clear sticky syrupy drainage

Dry material burns and causes mucus membrane to ache.

Dry material excessively dries mucus membrane and bones in affected areas (sinuses, throat, bones)

Flushing with waterpik for 5 to 30 minute sessions removes some of dry material, which always grows back

Flushing yields clear "syrupy" drainage with white looking material.

Not flushing results in "dry material" growing and covering mucus membrane with increased pain to mucus membrane.

Anywhere where this "dry material" is or HAS been, results in severe pain, which probably indicates infection is in deep tissues.

Severe pain in top of throat

Severe pain in ALL mucus membrane of ALL sinuses

Severe bone pain in facial bones around sinus openings in face

Severe bone pain in deeper sinus bones

Severe bone pain which radiates down into teeth.

Severe pain on mucus membrane leading up to ears, feels like bee or wasp sting.

Severe flu symptoms.

Bones in front of face and into sinuses expand/contract, seemingly according to moisture levels.

Large peice of bridgework which covers entire top teeth, fits tighter and loosers as bones expand/contract.

Daily activities of living severly limited due to severe weakness and severe pain including severe bone pain

Bone pain increases much, with activity

Description of pain

It feels like someone has taken nails, and nailed them up through the roof of my mouth to just under my eyes

Mucus membrane through entire sinuses feels chopped up, bruised, infected like 'raw bloody meat'

Top of throat feels kicked in with steel toed boots, bruised, infected

Mucus membrane leading to ears burns like bee or wasp stings

Severe bone pain in face around sinus openings radiating outwards, and bone pain deeper into sinuses

Bone pain feels like bones are 'broken', infected, and dry.

The drier the bones get,the more they seem to shrink with this cold, num strange ache.

All the painful areas are extremely dry with the moisture being 'sucked away'

Moisture, and super hydration helps the bone pain, and all the pain.

I have seen 5 specialists so far, 4 ENT's and 1 infectious disease physician.

Heatlh History

Sinus surgery for deviated septum in 1990

no history of any chronic illness

no history of diabetes or HIV

Treatment

Sinus surgery late July 2006

I have been on 5 to 6 different antibiotics. No relief.

One of my ENT's put me on an oral antifungal for 1 month.

The only relief I get is from super-hyrdation.

Drink lots of liquids

Use humidifier 24 hours a day

Flush and spray saline.

Take large amounts of fish oil.(40 to 80 capsules daily).

Pain meds

Blood work normal.

X Rays - normal

3 CT scans "normal" from early 2006

Bone scan done in 9-11-06, 7 weeks after sinus surgey "shows activity" in sinus region, which the radiologist attributed to the sinus surgery, not the bone pain/bone infection I have complained of since 3-15-06. Scan supposedly "within normal limits". (IT SHOULD BE NOTED - I asked my infectious disease, ENT, and primary physicians all to order a bone scan for 3 months before my sinus surgery, due to my excruciatingly severe bone pain and suspicion of bone infection. All three physicians refused to order a bone scan on many occaisions.). View bone scan for yourself - BONE SCAN picture 1 - BONE SCAN picture 2

Present

Future

My most realistic best hope at this point, is another bone scan, which shows the infection spreading further in my bones. If that is the case it could not be blamed on my surgery. I sincerly believe the areas of activity in my bone scan are infected bone. An MRI is not possible at this time due to dental work. A bone biopsy may be a possibility, although my doctors in Florida refused this option everytime I brought it up.

In January 2005 I started work as a graduate nurse, I had recently graduated with my bachelors degree in nursing. About this time I developed an infection in my throat. The infection started on the spot where the air hits your throat when you inhale through your nose. There was something very dry and burning growing on top of the mucus membrane.

About 2 days later, it spread forward into my sinuses, my eyes were sunken in, very scary looking. I had severe burning in my sinuses, with severe dryness. I had thick green bloody mucus when I blew my nose for 2 days in a row.

I drank a lot of fluids and splashed it to the top of my throat, to hit that original area where it started. When I slept at night it would get even dryer since I was not hydrating myself. I started sleeping with a jug of water next to me at night, drinking large amounts of fluids periodcaly during the night. I eventually started having to sleep with a humidifier.

I was able to improve the throat pain and dryness, and wash away the dry material that was growing in my throat to a certain degree, but I was focused on the sinuses now, which burned very bad, and were very dry. I had something dry growing on top of the mucus membrane, but I did not have a large amount of mucus, like a stuffy nose.

I went to a walk in clinic and I went on several antibiotics which didn't seem to fix the problem. At a certain point, I figured maybe the infection went away, and maybe it just left the mucus membrane dry and very irritated, so I tried using saline spray.

Months later, maybe MARCH 2005 or so, I realized I had no sense of smell. I realized something dry was growing throughout my entire sinuses, and it was dry, and even spread on the mucus membranes. I took saline and and flushed it through my sinuses with my water-pik, using the blunt end without the harsh spray. Cottage cheese looking material would come out from start to finish (five to fifteen minutes daily). I developed severe pain in my face, and I had full blown flu symptoms. I was in bed for 2 weeks. I continued to flush daily with the same white material expelled from my sinuses.

(Just a note, after about 4-5 months of flushing, I was able to get about 90% of the 'dry stuff' flushed out of my sinuses, but any lack of flushing would allow this material to grow back with a vengence).

Following this initial episode I saw an ENT (ENT #1). He said it was no big deal, keep flushing my sinuses. Xrays were taken, which were negative. I could not convince ENT#1 to order a CT scan on this visit, or any future visit. He said I did not need to be on antibiotics, and I should just keep flushing my sinuses.

About 3 months later I had a 2nd exacerbation, severe pain in my face, severe flu symptoms, (fevers etc..) in bed for 2 weeks, and about 3 months after that I had another exacerbation for the 3rd time, exactly the same, in bed for 2 weeks.

This dry material would dry the tissues up so much, and before each exacerbation, it would seem to make the tissues even dryer, and to spread around more. I would respond to the dryness, by more flushing, taking more fish oil, or just using the humidifier more. Making these extremley dry tissues in my head moist would cause these crazy exacerbations, and after the 3rd event, I started looking for a new ENT.

MARCH 2006 - Before I could find a new ENT to go to, I had a the 4th and permanent exacerbation. I went to the doctor I had seen at the walk in clinic just to get on antibiotics, and then I made an appointment with a new ENT. After about 8 weeks of horrible bone pain in my face, pain through my entire sinuses, throat, and ears, I saw ENT #2 who ordered a CT scan.

APRIL 2006 Before I returned to the ENT for my follow up, I went into the ER, because the pain and flu symptoms were too overpowering, and I was too weak to function. They sent me home with decongestants.

The CT scan was negative and he told me to see a neurologist for the problem (even though I had flu symptoms, fevers, and "dry stuff" growing in my head.

About 2 weeks later I went back into the ER crying my head off, telling them it felt like the bones in my face were "broken", I never cried that much in my life. The ER doctor ordered another CT which showed some mucus and possible signs of something. I took this CT with me to ENT #3.

MAY 2006 I started seeing a primary physician on my insurance. She doubted I had fungal sinusitis/osteomyelitis, since I did not have diabetes or HIV. Although I asked for a bone scan, she did not feel it was necessary, since the CT scan didn't show anything. I felt a bone scan was the best option, since a CT scan may not show a fungal infection, and I believed this infection was the cause of my bone pain. After several weeks I saw an ifectious disease doctor who had no clue. He ordered some blood work which was ok. When I asked him to order a bone scan he told me a bone infection in the sinus bones would not show well on a bone scan. When I suggested we possibly start a broad spectrum antibiotic, and if no relief, start IV antifungals, and he snapped at me telling me and I quote him "oral antibiotics are the same as IV antibiotics". I am a registered nurse. So why would he state something like that? Well thats not for me to say. Needless to say, he had no idea for treatment. And he did not want to see me again.

JUNE 2006 On about my 3rd visit to ENT #3, he finally gets tired of me coming into the office crying from the pain(I did not take pain meds for the first few months I was bed ridden, as I was afraid of asking for them and appearing to be a "drug addict"). He decides to do sinus surgery, which is scheduled for late July. I still have reservations about the surgery. I wonder if it will help my bone pain, throat pain, and ear pain. At this point I am desperate for any type of relief.

JULY 2006 Surgery goes okay, however ENT#3 reports that my sinuses "did not look too bad" once inside.

AUGUST 2006 No relief, after more doctor visits, ENT#3 decides it may be wise to do bone scan. ENT#3 calls my primary MD's office, and talks to someone in the office. My primary physician is out of town, but he speaks to someone, and says my primary provider will call me to set up the bone scan and possibly admit me to the hospital to run some tests. Nobody calls for about 2 weeks, so I make an appointment and see another physician since mine was out of town. She orders the bone scan, but not to look for a bone infection, but to look for a "tumor".

SEPTEMBER 2006 Bone scan pic1 - pic2 shows something going on in my sinus region for sure. The tech and radiologist all seem concerned and ask me if I have any family history of cancer. I realize something must have showed on the bone scan, and I am relieved. Maybe now I will get treated. The radiologists asks me if I have had sinus surgery, I tell him "yes, nearly 2 months ago". The next day I pick up the bone scan report which reads roughly "activitity in sinuses in patient who had recent sinus surgery.... bone scan within normal limits." I feel like this bone scan report is my death sentence. How will I ever get anybody to believe me now?

My ENT tells me he did not do much during my sinus surgery simply because there was not a lot in my sinuses, he believes the bone scan may indeed show signs of bone infection. We discuss what I should do. He thinks it would be wise for me to see a ENT specialist in Miami and get his opinion before I see a new infectious disease physican. I follow his advice, I cancel the new infectious disease appt I had, and make an appt to see this specialist in Miami.

OCTOBER 2006 The specialist in Miami won't even listen to what I have to say. He tries to tell me all my symptoms are from my surgery in July, I try to tell him I have been in bed since March 2006, and the symptoms started in January 2005, and my surgery was in July 2006. He tries to tell me I have neuralgia. I tell him that does not account for the flu symptoms, fevers, bone pain, and the dry material I have growing in me, that I have to flush out everyday. He talks to me like I am a preschooler, and I get absolutely no where. I must state I have been polite to every physician I have seen during my illness, regardless of how they have treated me, (very badly in some cases).

I visit my primary physician. I tell her about the specialist in Miami and that he ordered a CT scan. I ask her if she would order it since I am not sure if my insurance would cover it if a physician outside my network ordered it. She says I don't need a bone scan. I tell her I think a bone scan in the future might be the best bet, since if it shows the infection in my bones spreading, they cannot blame that on the surgery. She has previously refused to order a bone biopsy, now she says no more tests are needed. I ask her for pain medicine, and she tells me "your CT scans are normal, your bone scan was 'normal', and Dr. Burns didn't see a lot when he did your sinus surgery, you need to see a therapist". I ask her how a therapist is going to help my bone pain, or put a check in my mailbox. I tell her I have a bone infection, and unless the ENT had x-ray vision, he will not see a bone infection during surgery. She tells me "yes he would" (see a bone infection during my surgery). Of course this is my last visit to this person, which by the way I had trusted very much, but I can see she is more concerned about what she is probably having for dinner tonight, than for my well being.

I pay another visit to my ENT who now backs off any previous suggestion that I have a bone infection. He doesn't think another CT scan will show anything. He too says I may have a nerve problem causing my pain. I once again state that it does not account for the flu symptoms, fevers, bone pain, and the dry material I have growing in me, that I have to flush out of my head everyday. He at least gives me a small amount of pain medicine, and I plan on seeing a new infectious disease doctor once I continue my insurance on COBRA.

With no money, except what little my parents send me I am faced with continuing my insurance which is now over 400 dollars a month, and living in my car. I can let go of my insurance and keep paying rent, or I can go live with family out of state in Tennessee. I decide on the latter, and I move to my mother's in Tennessee.