Lastest on my ongoing saga

[jskinner]

It been a while since I gave an update on my situation. Thanks to everyone who has dropped me a note and ask me how I am doing. Just before Christmas the surgeon from Halifax called me back and said that after doing more analysis he thinks he can do an MMA after all. Normally they like to add 10mm. With me they can only do 5mm on my upper and lower jaw and then they would to an advancement 5mm on my chin. I've agreed to it at this point. I am going to Kingston, ON next week to get a second opinion from Dr. Michael Fitzpatrick (You may remember him from of the studies saying that patients can home titrate as well as PSGs)

I have been preparing a document for him to give him some history. Its long but a few of you might be interested in the full history of my past year. You can download it here

What ever happens I still need to get my nose fixed. This is even more important with the pending operation.

At this point the obstruction in my neck is affecting me quite a bit during the day as well. I have never heard of this in someone with sleep apnea being affected in the day too?

[JeffH]

Jesus James, I just read the whole thing and you have been thru hell! God, I hope this Doc can help you. I really feel for you.

Wishing you the best.


JeffH

[Slinky]

Wow, James! Very well done. As you, I still suspect the true cause is whatever has "gotten into" those nasal/sinus/throat cavities. Any way to trace down a lab in Canada or the US experienced dealing w/"exotic" bacteria (maybe even a virus) that could be cultured, maybe even from a biopsy?

Were you ever in an area or situation or close daily contact w/an immigrant or immigrants from a third world country?

I'm sure you know that I continue to wish you the best and an answer and correction of whatever the underlying cause is. Forgive me for being "mushy" but (((hugs))) and continued prayers.

[6PtStar]

We are all pulling for you! Hope every thing goes really well!!!!!!!!!!!!!!!!!

Jerry

[shardebhow]

JS,
I also read your whole saga. I kept on thinking. . .infectious disease doctor. . .maybe that's who you should have seen at some point. Also sounds like a HazMat type of company should have inspected your condo and the building it's in, if it is not free-standing. . .the vents, what material the structure was made from, the land the condo was built with. . If your condo is part of a building, I wonder if anyone else in the building is having health issues. All of this, though, does not address the blockage in your throat. . .

I am so sorry to hear of the hell you have been through. I hope that the procedure you will be going through will give you the relief you so sorely need.

Thoughts and prayers are with you.
Sharon

[NeedinZs]

James,

I can not believe what you have been through! I am so sorry.
Your frustration with no one taking you seriously HAS to be as frustrating as the illness itself. I felt like crying reading your history.

I agree with Sharon's post about feeling like it must be partly environmental, your home, new cat possibly carrying some type of disease?? I don't know, but the detective in me will certainly be working on this one!!

I'm wishing you all the best, you'll be in my prayers.

Gail

[jsmythe]

Hi James, you have really been through so much!! Just remember that we are all pulling for you.
I have you in my prayers, as I am sure most others do as well.

[jskinner]

I kept on thinking. . .infectious disease doctor. . .maybe that's who you should have seen at some point.

After a two month referral wait I saw an infectious disease doctor in Halifax yesterday. At the very least I was hoping that he could give me a definitive answer on the fungal question. I saw a resident first who took a very through history and then the doctor came in. He however didn't seem that interested. He said if it was a fungal problem it was not systemic so it wasn't really his problem. He suggested that the ENT should do a sinus culture (which I have asked for many times and he will not do) He thought it might be allergic fungal sinusitis but said it was not his area of expertise. He sent me for some blood work to see if there was sign of an allergic reaction and sent me home. I was very discouraged to say the least after the appointment.

Also sounds like a HazMat type of company should have inspected your condo and the building it's in

The building did have a mold problem a number of years back and they spent much money on remediation. It really doesn't matter now since I moved out last April.

Any way to trace down a lab in Canada or the US experienced dealing w/"exotic" bacteria (maybe even a virus) that could be cultured, maybe even from a biopsy?

Well I certainly agree that that should have been done long ago. Its only been since Nov, when I created the breathing tube, that I have had much energy to work on finding a solution. I was so out of it most of the year that I could barely function let alone find help.

My plan is that if nothing is learned from my trip to Ontario then I will head to the US to see Dr. Wellington S. Tichenor (http://www.sinuses.com/) He claims to be able to do cultures. The big problem in Canada is that I haven't been able to get any doctor interested and you can't just call specialist here, you have to have referrals.

Were you ever in an area or situation or close daily contact w/an immigrant or immigrants from a third world country?

Nope.

Your frustration with no one taking you seriously HAS to be as frustrating as the illness itself.

I can't begin to describe the feeling. I spent years getting to the point of being diagnosed with sleep apeana feeling like no one would take me seriously. Now I feel like I am going though it all again. I can' tell you what its like to have a stoke like event and no one believe you and then when the do finally they don't believe the cause. Now with the nasal problem, same deal. I'm starting to think its soemthing to do with me or the way I present myself

[Slinky]

I just do NOT understand this reluctance to do a d*mn culture!!! And at this point it would probably require a biopsy or at least a punch biopsy. Sheesh!

[jskinner]

I just do NOT understand this reluctance to do a d*mn culture!!! And at this point it would probably require a biopsy or at least a punch biopsy. Sheesh!

My current ENT says its not useful since the nose is full of all kinda of baceteria, etc anyway. The research that I have done suggest that he may be partially right but that there are people that can do them and get useful information. I have a hard time believing that couldn't be of some value. Part of the problem now I think is that I am living in a very rural area with limited resources and knowledge. If I knew where to go I would.

All of this, though, does not address the blockage in your throat. . .

Yeah something has to be done about that. As soon as possible. I can barely handle it some days. Has anyone ever heard of the obstruction causing sleep apnea to actually bother the person during the day??

[sleepycarol]

Please keep us updated!!

We DO care and wish there was some way we could help you!!

Get well soon and hope you figure out what is going on with you!!!

[jskinner]

Don't give-up -- keep coming back for support!!

Its been pretty hard not to give up at times. However physical agony is a good motivator. This group has been a great support system. Particularly in the first half of last year. I had pretty much given up hope by mid year but first the dental device in Jun and then the creation of the breathing tube in November has turned things around so I hope to find some solutions now.

[Julie]

James, are you in a position to visit the Mayo Clinic? I mean can you get someone here to refer you to someone there (assuming you can afford the trip)?

[papoose]

James,

I read your story, too, and although I am saddened by your misery and moved by your determination, what struck me most was how similar your story is to mine. For starters, I have the same narrow airway, long uvula, and redundant palate issues that you do. And I’ve experienced the same daytime problems and disgust with the medical profession. For years, doctors dismissed my swallowing problems, strangling sensation, tongue swelling, choking, etc., and because I’m a woman, they called it globus hystericus (a head problem). I suffered for too many years before my OSA diagnosis and subsequent throat examination.

I also have cats and find that a strange benefit of my throat structure is that I can make purring sounds exactly like them!

But seriously, James, it looks and sounds like your nasal congestion is a yeast, or candida colonization -- very common in mucous membranes including the nose, the digestive tract, and (as any woman can tell you) the vagina. Your history includes the use of nasal steroids, which can lead to candidiasis. At least two of your doctors prescribed nystatin, which you claimed was ineffective. My questions are, how did you take it, and for how long? I’m wondering if you were instructed to inhale it in powdered form or use it as a nasal rinse in addition to taking it orally. If you are interested, I will PM you the details for treating a nasal yeast infection from a book I have called The Yeast Connection by William G. Crook (no kidding), M.D. It’s been around for 20 years and still available on Amazon.com.

It seems to me that your allergies, sleep problems, and perhaps other factors conspired to weaken your immune system and the opportunistic yeast infection is doing even greater harm. I wish you all the best.

[jskinner]

James, are you in a position to visit the Mayo Clinic? I mean can you get someone here to refer you to someone there (assuming you can afford the trip)?

I could certinaly scrape together the money to make the trip. Its the medical bill that I wouldn't likely be able to afford.

But seriously, James, it looks and sounds like your nasal congestion is a yeast, or candida colonization

I agree that the fungus idea seems the most likely. Trying to find someone to agree and that knows how to treat it is a different story. The Lamisil, Nystatin, Amphotericin B, Itraconazole, and Ketoconazole where all antifungals used based on the idea that the problem was fungal (but no test where ever used to confirm).

My current ENT says my tongue is within normal limits! Yeah right!

At least two of your doctors prescribed nystatin, which you claimed was ineffective. My questions are, how did you take it, and for how long?

The first time on nystatin seemed to almost cure the problem. Its not clear to me why more nystatin has not been tried. The second time it didn't seem to help that much.

I’m wondering if you were instructed to inhale it in powdered form or use it as a nasal rinse in addition to taking it orally.

Nope I only took it orally. However the second time I had it I used to put some in my nose because I was desperate. It stung like *&^% but it did seem to help a bit. Both times I was given nystatin it was only for a couple of weeks.