JSkinner, Where Are You? How Are You Doing?

[Alisha]

James, I had also been watching the board to find out how you are doing. Please know that I am praying for you and will continue to do so.

Regards,

Alisha

[allend]

Here are some sites that might help but you must know all this already. Maybe mine is fungal too. I may try the sntifungal liquid for my pool. Just kidding.


http://www.drmirkin.com/morehealth/G220.htm

http://www.acaai.org/public/advice/sinus.htm

http://www.sciencedaily.com/releases/19 ... 080344.htm

http://www.cnn.com/HEALTH/library/DS/00498.html

http://www.cigna.com/healthinfo/hw67419.html

[JeffH]

Hang in there James. We are all pulling for you.

JeffH

[Slinky]

Just a thought, James. Set your CPAP up on an end table next to a recliner and try sleeping in the recliner w/your CPAP. When I had that bad (but minor compared to what you are going thru) recurrent sinus infection for 2 1/2 years some nights the only relief I got was sleeping in a recliner. I needed a pillow w/the recliner to keep my head a little more upright than the recliner itself allowed. Just a thin one, but a pillow nonetheless. I didn't have OSA then so didn't do the CPAP bit but no reason why you can't set your CPAP up next to the recliner. Good bless, good friend to us all.

[drbandage]

Hi James -
I didn't want it to get lost in the shuffle, so here's another go at it:

Like many others here, James, I have been very sorry to hear about your problems. Most of the recent ideas that have crossed my mind in regards to this ailment involve a multifactorial explanation of the cause, but I am thinking about a particular ailment that is referred to as allergic fungal sinusitis. Young-ish adults, and especially those with nasal polyps, are the usual suspects. And I would bet that puts you in that category. Although I am a doctor, (but I don’t play one on TV), I want to emphasize that this is not my area of expertise, and that I am not attempting to diagnose or treat you. I think you understand that, but it bears repeating.

At the risk of getting a little too personal, your recent photo looks remarkably different to me than the one that was up when I first showed up on the board a couple of months ago. There is a term in medicine called proptosis. Do your eyes seem a little more protuberant in conjuction with the misery that you’re experiencing? If so, this would be potentially be consistent with extensive sinus involvement.

Symptoms of what I suspect are pretty dang similar to what you’ve described, James. The problem I am referring to is most likely the endpoint in a spectrum of sinonasal disease, driven by the presence of fungus accompanied by inflammatory cell mediators. The affected nasal mucosa no longer functions properly, and a cycle of chronic edema, stasis, and bacterial superinfection results. Therapy entails disrupting the inflammatory process to allow normal mucosal function to resume.

Allergic fungal sinusitis (I'm going to call it AFS from now on, although the acronym is not in common use, i.e., I made it up!) is related to a hypersensitivity reaction to fungal antigens. Lots of fungal agents have been implicated, but most are from the “Dematiaceae” family. Labs show a marked increase in eosinophilia and total IgE (that’s basically an allergic reaction response).

AFS was initially described in the medical literature about 20 years ago. There have been a number of efforts to fully define and explain the disorder, but it has been loosely described as the sinonasal equivalent of allergic bronchopulmonary aspergillosis. It can’t be categorized that easily, but if you were to Google “allergic bronchopulmonary aspergillosis”, you’d get a pretty good idea.

AFS is not only difficult to diagnose, but it is one of the most complicated conditions to manage. You pretty much have to undergo sinus surgery (usually endoscopic) and also include long-term medical therapy, oral and nasal corticosteroids, immunotherapy, antifungal therapy, and antimicrobial agents to effectively control the problem.

CT and MRI findings can be quite distinctive, but alone are not diagnostic. Diagnosis requires histopathologic examination, which shows characteristic allergic mucin.

Treatment of AFS usually requires exenteration (i.e., scraping out) of all allergic mucin, often (but not always) accomplished endoscopically. Adjunctive short-term steroids taken by mouth are often helpful, and nasal steroid sprays are usually needed long term. The length and dose of steroid therapy is controversial, so don’t ask me.

Unfortunately, recurrence of sinonasal symptoms can occur particularly when there has been incomplete removal of allergic fungal mucin. Recurrence presumably is a result of reexposure to fungal antigens. Therefore close clinical, endoscopic, and radiographic follow-up is important.

Caveat: I am not diagnosing you, nor prescribing any particular treatment plan. I’m just speculating about what may be the reason you’re having such horrendous problems. I very well could be entirely mistaken. But, either way, I wish you well, James. If it were me, I would go to a well known, academically affiliated institution for further workup and treatment ideas.

[Guest]

James,

Like many here I have been following what has been going on with your sinus condition. I just wanted to say that my thoughts and prayers are with you and that I do hope you see improvement in a different environment.

Todd

[jskinner]

I've had a number of PM asking how I have been doing lately so I thought I should post a short summery of whats been going on lately.

Well for the past month now my nasal situation has improved slightly in that I have been able to get some air flow into my sinuses now. I'm still having congestion during the day and still am unable to use Nasal CPAP on a regular basis. I have on 3 ocassions been able to use the Nasal mask all night so it appears at the nasal issue is a bit better since in Nov-Jan when I could only tolerate it 2-3 hours before everything was swollen shut. On each use however I was struggling my morning and I don't think its safe (even if its an improvement)

As most of you know a couple of weeks ago I finally got a Resperologist who is willing to work with me to try and find some solution. His first step was to try a BiPAP. I got that at the end of last week. It didn't stop the nasal swelling but it certinaly is easier to breath with. It might have lengthened the time before swelling get to the point where its unbearable. After having used a BiPAP I think they should be standard equipment, my next machine will definitely be a BiPAP. Breathing is just much more natural on it.

Due to my ongoing uncertainty if there was some environmental factor I made the very hard decision to move out of my condo. It also was becoming a financial necessity since I've not been able to work since 2005 due too all the events surrounding this illness. Its been pretty tough. I have moved in temporarily with a friend until I figure out what to do. I've been going back to the condo every few days to pack things up. I don't have a lot of energy so I'm doing to do it in small chunks. I have to have it all out by the end of April. Its all a bit overwhelming really.

This week I saw a Nurologist about the problems I have been having with my right side. For those of you don't know, two weeks before I got on CPAP I woke up with numbness, tingling, and weakness in my right side. Its still bothering me a lot 9 months later. The Dr. completely dismissed any connection to sleep apeana which I thought was rediculus. He stated that many people live their entire lives with untreated sleep apnea and never have any problem! I'm sure thats true for mild sleep apnea but he seemed to completely be clueless about the possible dangers.

Right now I'm just waiting to see the Resperolist again to find out what the next step is. He wanted to try a dental device next but I don't see how that will help since I will still have to blow air though my nose with will cause the irritation.

If I don't find some solution soon I may be forced to move back to Nova Scotia for a while with my parents. I really don't want to do that but I may have to. I'd hate to have to start all over finding doctors again but I did start working on that a bit when I was back there last month.

I'm really tired of being exhausted, having the bad headaches again, heart palpitations, right side aches, etc. However like I said in another thread I have had a pretty good three nights in a row so its a bit a relief for now.

Thanks so much for everyones concern and support. Its really been a huge help.

[oceanpearl]

James
Not familiar with your problem, other than what is on this thread. My neighbor had similar problems that you seem to be experiencing. Her husband is a cheapskate, so I bought her a mold test kit, which she activated and mailed back to the test lab.
She was notified that they should get out of the house immediately and not return until the mold problem had been taken care of. This required tearing out the drywall on two walls, treating all surfaces and running some sort of ionizer for several days before they could move back in.
Here are a couple of sites with good info on molds.
http://www.mold-help.org/
http://www.toxic-mold-news.com/
I wish you luck!
Ben

[jskinner]

James, how are you doing. Has the swelling gone down any more? Are you any more comfortable?

No reduction in swelling since the small improvement in February. I'm basically just waiting now to see the ENT again and to see a sleep dentist on April 13.

I made a radical decision last night. For the first time since July 2006 I decided to go without CPAP. I made this decision for two reasons:

1. I said to myself do I feel better for worse after a night of using the Oracle than I did before I went on CPAP. The answer that kept coming up in my mind is that i feel worse now than before treatment. I started wondering if the Oracle could actually make the situation worse rather than helping. Besides that I was just getting to the point where I couldn't handle facing the thought of going to bed and putting it on.

2. The prevailing theory about the swelling is that the CPAP pressure has been causing it (setting aside the fungal infection theory) Dispite the fact that I have been mostly off the nasal mask for over 2 months now there has been little improvement in the congestion. Its possible that simply the pressure even when using the Oracle is causing irritation. So I decided the only way to find out for sure is to stop using the CPAP all together for a few days to find out.

So last night I headed to bed sans CPAP. It was a weird feeling getting into bed and not hooking up. Weird but nice. Took me longer to get to sleep than usual as I think I was nervous that I was going to have a very bad night. Surprisingly it wasn't too bad. Sure I woke up more than usual but not as much as I expected. When I woke up I felt ok, certinaly better than the past few months using the Oracle.

[Guest]

Hi James,

What happened to the total face mask? Was that only a trial? I think I remember in another thread that you said it seemed better that using the oracle and did not seem to pressure your sinuses. Glad you actually got some sleep.

Todd

[lvwildcat]

Hey James-sorry the Oracle wasn't the answer for you(I'm in the minority-LOOOVE it) But keep hanging in there-keep strong- don't let the equipment win.
You have to promise to post another after pic of yourself when this is all said and done. I don't think I've seen as much talk over a before/after pic as you have caused. Just goes to show how close we all really are and the genuine concern we all have for each other.

[SelfSeeker]

James,

Thank you for posting an update.

Think positive. I hope you figure this all out. You deserve to be happy and healthy.

I really feel for you and understand your exhausted tired of being tired state. Hopefully once the infection or whatever it is, much of the exhaustion will be gone.

[Slinky]

James, how were last night's 02 sats w/o xPAP? Glad to read you feel a little better this morning! I guess sometimes we have to be thankful for small favors, even if it is just the result of a "little" more rest, a "little" bit of feeling better. *sigh*

Maybe the "with" and "without" 02 sats will tell your sleep doc and ENT "something" worthwhile or helpful.

[jskinner]

What happened to the total face mask? Was that only a trial? I think I remember in another thread that you said it seemed better that using the oracle and did not seem to pressure your sinuses.

Yeah it was a 3 day trial. Turned out to be not good despite my initial night sucess. My follow up review can be found at viewtopic.php?p=160114&highlight=#160114

You have to promise to post another after pic of yourself when this is all said and done.

Will do.

Just goes to show how close we all really are and the genuine concern we all have for each other.

This really is an amazing supportive group. I'm lucky to have found it and to have all of your help.

James, how were last night's 02 sats w/o xPAP?

Surprisingly my O2 numbers where better than any night I have used the Oracle (but not as good as when I was using the Total Face Mask). I'm really starting to think the Oracle was actually making the situation worse (need a few more nights to say for sure).

Last night:


I'm off to see the ENT again tomorrow. Hopefully he will have some ideas. I just got the appointment today and had I known I might not have gone off CPAP last night as my nose is noticeably better day as a result.

[Slinky]

We're darned if we do and darned if we don't some days, James.

I can feel like the newspapers in the whelping box of life, call the doctor for an appointment and wake up feeling like a million bucks the next day (naturally, the day of the appointment). Of course, if I call and cancel the appointment that morning, by the afternoon I'll be feeling like the bugs on the windshield.

Good luck tomorrow. Stay off tonight too. What the hay, I'm all for feeling better. Looks like you don't even need CPAP given last night's sats!!!! What the devil were the stats during your evaluation study that they decided you need CPAP???

Of course, one night does not a lifetime make ......