Fungal infection?

[jskinner]

How's it going, James? Any improvement/diagnosis?

I stopped using CPAP about 3 weeks ago because it was becoming clear that I was worse off on it than off using the Oracle. Even off the Oracle the mucosa in my nose is very enlarged.

I've had some better days and some really bad ones. Many morning its takes me 4-6 hours to get feeling well enough to do much.

I am the most ill I have ever been in my life that is for sure. If I could stop the apnea tomorrow I think it would takes weeks maybe months for my body to recover.

I just don't understand why sevre sleep apnea is not considered an emergency. I seem unable to convince any doctor how how ill it has made me, how much it has affected my heart, that I caused some type of event last June which has affected my right side. I've stopped going to my GP because he was just not interested.

I have spent the last 2 weeks in Nova Scoita with my parents taking care of me. I saw a different ENT there and she seemed quite interested in tying to help. Unfortunatly she had only scheduled 10 minutes for me and we barley got to talk about anything. She wanted me to cancel my surgery in Ottawa and she would try get to the bottom of it. However if she ended up doing surgery it would not be until June 14.

This was a very hard decision for me. I really would like someone to look into the issue more as she seemed to want to do but I just can not go on suffering like I am. I'm very concerned that the surgery won't actually cure the problem since the mucosa seems to be swollen in my entire nose not just the inferior turbinates are are going to be reduced. Anyway even though I am very unsure I have decided to go though with the surgery out of desperation, I need to get back on CPAP and this seems to be my only near term hope.

Most nights now I wake up a few times gasping, heart racing, and head pounding. By morning my chest feels very worn out as do I. I've really lost all faith in the medical system. If they can't see the problem when you are standing in front of them then they aren't interested. Even if they see a problem here in Canada it will takes months to get anything done about it.

If someone told me that one could be this ill and not get fast medical help I never would have believed it. I desperately hope that the surgery on Thursday is not in vain (or worse yet make things worse)

[sharon1965]

omg, james

you have really been through it...i've followed your story for a while, but just now sat and read this entire thread, and i feel so bad for you...what exactly is being done on thursday? and are you being kept overnight? i'll be thinking about you on thurs and i hope you'll post and let us know how you're doing as soon as you're able

take good care, best of luck

sharon1965

[jskinner]

what exactly is being done on thursday? and are you being kept overnight?

I'm having a septoplasty and turbinate reduction. My septium is only slightly deviated (3 other drs. wait it wasn't worth fixing) but he said since he was going to be in there anyway he would straiten it.

Yeah normally I would get out a few hours after the surgery but due to my OSA they are keeping me over night.

[PeaceSleeper]

I've had 5 sinus procedures, so don't know if this is your first or further down the road. If you've had them, you know you won't be breathing out of your nose for a few days most likely. However, I had severe sinus disease and was living on antibiotics and prednisone and the surgery made a huge improvement in my life. However, it was very slow recovery, and it was prior to them figuring out I had sleep apnea as well.

I am writing this to give you evidence, not just emotional support, because I have been able to dramatically improve my severe sinus disease to the point where my life is much, much better. I noted in a much earlier post a book I had read and since have met the author several times, "Sinus Survival", which is a holistic approach to sinus care. It is not a magic bullet, but rather part of the answer for people with severe sinus disease. If you have major structural blockage in the OMC area, then surgery is the right thing and you just need to make sure you are confident in your surgeon. I also live in Ontario and the medical system here compared to British Columbia is in a less than optimal state. Despite this, from what I've read, you are on the right path. Get structural issues fixed so drainage can occur, then work aggressively on reducing the inflammation with non-destructive tools. I still use nasal corticosteroid spray, but keep my distance from systemic steroids unless my asthma is really bad.

I want you to hang in there and try to stay rational about all of this stuff that is going on. I've been to the edge a few times over my sinuses and particularly the headache that comes as part of the package, but somebody always managed to pull me back. It can get better--I'm living proof. PM me if you want more info.

Peace

[DreamSeeker]

Good luck James. We'll all be thinking of you. Hope things turn out well. You're due.

[kavanaugh1950]

GOOD LUCK JAMES, YOU DESERVE IT. I KNOW HOW FRUSTRATING IT IS TO BE ILL AND NO ONE HAS A CLUE AS TO WHAT IS WRONG. I WORK IN THE MEDICAL FIELD AND EVEN I GET FRUSTRATED. I REALLY HOPE THIS FIXES THE PROBLEM AND YOU CAN GET BACK ON YOUR FEET. YOU ARE TOO YOUNG TO SPEND YOUR LIFE BEING SICK. I WILL SAY A PRAYER FOR YOU. PAT

[RosemaryB]

James, I just read this thread for the first time and think that it is dreadful for you to be going through this! My thoughts are with you for your surgery {{{hug}}}.

In reading through this a few things registered on my radar that made me wonder if gluten sensitivity could be an important underlying factor in your fungal/sinus condition. Gluten sensitivity apparently affects many more people than was previously thought (I’m one of them) and can underlie numerous conditions. Anecdotal evidence includes multiple allergies, not just food allergies but also ones due to pollen, dust, pets, and mold may be triggered by the gluten problems (I have both).

About Sinusitis, from http://www.digitalnaturopath.com/cond/C55833.html

It appears that a key to resolving the problem will be to reduce the immune response or activation of eosinophils to the fungus. Just as one person reacts to ragweed while another does not, reducing the overactivity of the immune system may lead to lower levels of eosinophils (or less activation thereof), less irritation, and fewer symptoms. Since chronic sinusitis is associated with allergy, long-term control can be dependent on isolation and elimination of the food or airborne allergens which may be contributing to the overall allergic load and correction of the underlying problem which allowed the allergy to develop. This may require desensitization procedures. During the acute phase, elimination of the common food allergens (milk, wheat, eggs, citrus, corn, peanuts) is indicated until a more definitive diagnosis can be made.

[According to this website, gluten sensitivity is one of the risk factors for sinusitis.]

Not all people with gluten sensitivity have celiac disease, although the medical profession has been backward in recognizing this. Many people have gone on a gluten free diet to see if their other conditions improve. It is remarkable to read the stories of people who were misdiagnosed for years and the great improvements once they found out and went on a GF diet. These stories resemble the stories of people with SDB (though not the same conditions). A number of the disorders secondary to gluten sensitivity are also life threatening, including neurological complications.

Here’s one website with some of these stories:

http://neurotalk.psychcentral.com/forumdisplay.php?f=13

I know that this may be just one more thing to check out when you aren’t feeling up to it, but if you’d like more information, PM me and I’ll provide more resources including some blood tests that can be done. I hope that you find ways to recover from these serious problems you are having.

Rose

[jskinner]

So yesterday I had my pre-op tests at the Civic Hospital (which where really just questions and paperwork) I talked with the anesthesiologist about my OSA and he said they would intubate me for the operation and them keep me over night to make sure I was ok during sleep (although he said I probably wouldn't get much sleep in the recovery room where I would be staying)

This morning I get a call from the Surgeons office. The hospital had to change its schedule and the can't rebook until June 14th!

Unbelievable. Sigh.

If you have major structural blockage in the OMC area, then surgery is the right thing

Thats one thing that has annoyed me before Nov I didn't have any bad blockage just some allergy problems. I can't see how a structural problem would just happen over a few days?

I also live in Ontario and the medical system here compared to British Columbia is in a less than optimal state.

Its hard to believe really. Had I not lived though this I would not have believed how bad it really is...

Get structural issues fixed so drainage can occur, then work aggressively on reducing the inflammation with non-destructive tools.

The problem appears to be swollen mucusa. Nothing however seems to help it. My biggest worry is that I will get the inferior turbinates reduces and the mucusa in the rest of my nose will still be a problem.

[Guest]

What's up with June 14th?

I really would like someone to look into the issue more as she seemed to want to do but I just can not go on suffering like I am. I'm very concerned that the surgery won't actually cure the problem since the mucosa seems to be swollen in my entire nose not just the inferior turbinates are are going to be reduced. Anyway even though I am very unsure I have decided to go though with the surgery out of desperation, I need to get back on CPAP and this seems to be my only near term hope

If you like the other ENT in Nova Scotia better, set a date for both the surgeons. It seems like the one in Nova Scotia will take an approach that you are more comfortable with anyway. I really hope they get to the bottom of this for you.

TM

[JeffH]

So yesterday I had my pre-op tests at the Civic Hospital (which where really just questions and paperwork) I talked with the anesthesiologist about my OSA and he said they would intubate me for the operation and them keep me over night to make sure I was ok during sleep (although he said I probably wouldn't get much sleep in the recovery room where I would be staying)

This morning I get a call from the Surgeons office. The hospital had to change its schedule and the can't rebook until June 14th!

Unbelievable. Sigh.

If you have major structural blockage in the OMC area, then surgery is the right thing

Thats one thing that has annoyed me before Nov I didn't have any bad blockage just some allergy problems. I can't see how a structural problem would just happen over a few days?

I also live in Ontario and the medical system here compared to British Columbia is in a less than optimal state.

Its hard to believe really. Had I not lived though this I would not have believed how bad it really is...

Get structural issues fixed so drainage can occur, then work aggressively on reducing the inflammation with non-destructive tools.

The problem appears to be swollen mucusa. Nothing however seems to help it. My biggest worry is that I will get the inferior turbinates reduces and the mucusa in the rest of my nose will still be a problem.

Jesus, what bad luck. Sorry to hear that James.

[sharon1965]

ahhh, james

that sucks so bad

i feel for you, i really do...it makes you feel so helpless with our provincial healthcare in such a state and there are no other options...we really are held hostage here in ontario, aren't we?

i know you've been feeling apprehensive about this surgery to begin with and now, after getting your head around it, you have to wait

i'm so sorry to hear it...

sharon1965

[frapilu]

James,

I'm so sorry to hear your surgery has been postponed. I'm nowhere near as sick as you are and when my septoplasty was postponed I was so upset so I can well imagine you must feel even worse.

My heart goes out to you. Take care.
France

[Slinky]

Eegads, James! If it weren't for bad luck you wouldn't have any luck at all!!! I'm sorry to hear the surgery has been postponed. I can only imagine you must want it over and done with!!! (((hugs))) You will continue to be in my prayers.

[bast]

dear james,

sometimes odd ailments respond well to chinese medicine - usually TCM/herbs with acupuncture. i had mycoplasmal (fungal) pneumonia years ago, and while nothing else seemed to work, that did. it took a while, but was restorative rather than giving me a bunch of side effects to then heal from.

maybe it's not something that rings your bell, but in case this is the "third time today" someone's said it and that spurs you into trying something else, and since i kept hearing it in my mind as i read your thread, i'm sending this along. pm me if you have questions. i have a good friend who's canadian and an acupuncturist who might know someone in your area or have suggestions.

we are following your progress and trying to align our wills with a positive outcome for you.

keep on breathing.

peace and healing,
ellah

[gasp]

Yeah normally I would get out a few hours after the surgery but due to my OSA they are keeping me over night.

Hopefully seeing is believing for the medical staff to see the physical effects of apnea as they are monitored during your hospital stay!

I too am so sorry you have had to go through so much. I applaud your willingness to stick with it! You deserve the best of care and the best health. I will continue to read this thread and hope for the best.

PS Shooting in the dark here, but I thought I read earlier in the thread that being in your mom's home made you worse and you just went again for her to take care of you. Did her home cause less problems this time. Here's my shot in the dark: I'm severely allergic to chemicals and airborne chemicals from air fresheners, scented candles, perfumes, you name it cause a severe sinus/bronchial reaction for me.