Lastest on my ongoing saga

krousseau wrote:How much steroid have you been given?

See Appendix A, although I have not included strengths there.

krousseau wrote:Are the changes soft tissue or has the underlying bone structure changed?

mocusa only in my opnion.

krousseau wrote:Have there been any changes in your hands or feet, like increased glove or shoe size?

No.

krousseau wrote:How about your jaw?

Only soreness from the oral device.

krousseau wrote:And again a long shot, but if they have only done routine cultures, that isn't adequate.

There really has been no culturing done to date to speak of! This still boggles my mind. My current ENT claims nasal cultures are not useful.

krousseau wrote:Make sure you have had cultures specifically for mold/fungi.

Nope, I have asked repeatedly. thats why I am thinking of going to NYC if nothing pans out with this Ontario trip.

krousseau wrote:Do a one page summary.

I originally gave the doctor just that. Thats what prompted him to request the more detailed version.

krousseau wrote:In back of the summary include any printed reports of tests you have had in reverse chronological order.

I'm taking two file folders full of reports with me to the appointment next Tuesday in case he wants any of them.

I've just finished reading your report James - it's dreadful to think of what you've been through. I hope you will finally get the treatment you need so badly. Your doctor's request of a longer report bodes well.

O.

For some reason I didn't see the medication summary on the first opening of the document. Just saw it. You haven't had a lot of systemic medication-steroid or antifungal. You have had a lot of irritating stuff sprayed up your nose.
If you have a fungal infection in your sinuses I'm inclined to think a nasal spray isn't going to deliver the medication to where it is needed. Sinus infections are notoriously hard to treat even with systemic medication-two weeks of oral med is questionable. Of course it sounds as if you never had an appropriate culture anyway. I can't imagine how frustrating this must be for you-I'm frustrated just reading about it.

krousseau wrote:If you have a fungal infection in your sinuses I'm inclined to think a nasal spray isn't going to deliver the medication to where it is needed.

Agreed.

krousseau wrote:Sinus infections are notoriously hard to treat even with systemic medication-two weeks of oral med is questionable.

My sinuses have never really bothered me though out this experience. Its mostly just nasal congestion, blocks off the sinuses yes, but I haven't had any sinus pain that you would think of with a bacterial infection.

The 10 weeks that I took oral Itraconazole was pretty brutal. I'd hate to think I would have to go though that again.

I am done with guesses of what this is. It seem most likely that it is fungal but I want someone to actually test it, find out, and the treat it with the most powerful stuff available until its fixed.

Yes, I completely agree. You must be cultured and biopsied, in multiple locations because I suspect you have multiple organisms going on. I know how frustrated you are. Even with the antifungals nonstop, they may not be the right ones--so don't give up until you are cultured and biopsied.

I CANNOT BELIEVE that in all this time no doctor has done this! You just have to get to the right doctor. Ask every doctor you see for a referrel to an infectious disease doc until you get yourself in the door. I maintain this is the root, the beginning, the source of all the problems. It may not solve everything to get the infection under control now after all this time has passed, but it should make the rest of your recovery easier.

And getting surgery with an infection on board may compromise your recovery. I mean, who knows--perhaps these organisms secrete some substance that makes the muscles of the throat/neck lax? God only knows what complications they could be causing! I'm not saying that is what is happening, but it certainly lies in the realm of possibility. Think about how strong penicillin is--a mold secretion itself and a very powerful drug. Pure speculation, but not entirely a crazy thought.

Jen

Antifungals are right up there with chemotherapy. The nasal spray is sort of like snorting acid.

socknitster wrote: You have been on and off both steroids (which supress the immune system) and antibiotics (which kill of good and bad bacteria, leaving nothing to keep any other microorganisms in check) so many times over the last 15 months I cannot believe your doctors cannot see this.

Yep it certinally seems quite possible. Problem is that every ENT that I have seen to date doesn't seem to be able to see the problem.

socknitster wrote:These wee beasties obviously are deeply rooted in your nasal tissue and may even be affecting your throat as well.

Personally I feel that its very likely that it has affected my throat as well. I never had any problems feeling like my throat was sicky, clogged, and closing during the day before this nasal/tongue problem. I'd almost put money on it that it has complicated the problem.

socknitster wrote:The pictures you show are so clear

I have shown them both to my ENT and the infectious disease doctor on monday. Neither seems that concerned

socknitster wrote: ANd the thrush in your mouth--clearly related!

I agree.

socknitster wrote:I agree that an infectious disease specialist is a MUST. Get one of your doctors to refer you to one. All you need do is show them these photos of this foamy white stuff in your nose.

Saw on one Monday after a two month wait for referral. Showed him the pictures. His resisdent was concerned but he was not. He said there where no signs it was systemic and there for it is the ENTs area of expertise. I was very discouraged.

socknitster wrote:I believe you have two issues which aren't completely unrelated but must be addressed separately. The nasal/oral infection and the airway collapse.

Completely agree.

socknitster wrote:I applaud your tenacity. Despite the debilitation of what you have gone thru, you have perservered.

There hasn't been much choice. Trust me I gave up numerous times but the agony always remotivates me. I am running out of energy now though. My body is very tried. I seemed to have developed muscle acking much of the time now.

socknitster wrote: And what about these lipomas? Are these growing and putting pressure on the airway?

My mother keeps asking the same thing. I have wondered it as well. Who knows, no one has checked them since they where discovered in late 2006.

James,

Please ignore if this comes out as gibberish, I am pretty foggy right now.

In a previous post I mentioned a temporary precautionary tracheostomy.

For right now, this might be something to discuss with the surgeon [and members of the forum.] Specifically regarding the recovery room after ANY surgery you might have.

The aesthesiologist [will] should watch and keep up you oxigenated during surgery.

The recovery room is a place where you and some of the rest of us might be in danger in regard to oxygen desaturation.

My sleep disorders specialist said this to me three weeks ago in regard to what I might include in medic alert information.

Some hospitals might allow a relative or friend to be an advocate and stay with you inthe recovery room.

A blocked nose and surgery on your jaw and surrounding areas might require extra special attention.

Sleep disorders together with surgery is a very new and somewhat thinly charted territory.

I did not intend to add to your burdens of stress, along with everything else you have been through.

Sometimes the Doctors do not think of the very basic, low tech: add the impaired air through the nose to the effects of surgery and residual aesthesia.

Ignore this if it sounds like gibberish.

My prayers and the best of luck.

Nasty
[/b]

Autobipap max autotitrated IPAP 25cm
Autobipap max autotitrated Epap 20 cm
IPAP<=90% !9 cm
EPAP<=90% 15.4 cm

James,

In my foggyness, I neglected to mention the tracheostomy should [might] be pre-surgery.

To address the particular problems of oxygenation after your particular type of surgery componded by the nasal obstruction

Nasty

Been doing some Googling research on runny nose, rhinitis and sinus problems.

This is a 20 year old article so may be technically out of date, but it explains some of the terms used in the other articles:

http://www.mayoclinicproceedings.com/in ... D=2686&UID

An interesting site which contains a critique of the above article and lots and lots of info about upper airways.
http://www.sinuscarecenter.com/index.htm

This is a 2000 overview.
http://www.american-rhinologic.org/news ... rgic.phtml

Sinus revision

http://www.entdocs.org/Sinuses.htm

regards

Di

edited to make sense

Wow James. Just finished reading your document....
All I can add to everyone's comment is another version of "I wish you best of luck in getting this thing diagnosed and put to bed".....

The runaround you are getting from the medical profession is, in my opinion, criminal.
Not making any political statement, it sure doesn't speak well of the medical system you are forced to deal with. It really makes one think and wonder about what is going on in this country when people talk about "Universal Health Care"......Scary!!

Again, all the best to you my friend, and I'll make sure I send good vibes in your direction!!!! Thanks for continuing to keep us up on your situation!!

Take care
cheers
goose

I have no insight or advice to give, but I just wanted to add my best wishes and hope for improvement. I am so sorry for all that you have been through. Your original symptoms, and the doctor's dismissal of them sounded so much like my experience, I can't tell you how much sympathy I have. Good luck and keep fighting. I live in MN and if you ever do decide to try Mayo let me know and I will do what I can to help you out.

Same here James, I can't be of assistance other than to wish you well and to never give up! socknitster(Jen) you are a reminder of what a great board we have here, full of some very talented people. Hang in there James, this too will pass. Regards

I'm so shocked and sorry for all you've been through. Your experience with doctors is shameful. Some get in to medicine to help people, and some for the money. I'm not sure if Canadian doctors make money like doctors in the US, anywhoo they should have gone further to help you.

I found this link about yeast: http://www.newswithviews.com/Howenstine/james7.htm

Here's 3 particular things that came to my attention:

Candida are highly allergenic.

and

The immune system fails to handle infections normally until the candida excess is corrected. Nasal yeast may appear after intranasal cortisone therapy.

and

Therapy can be successful using garlic, caprylic acid, Nystatin, Amphotericin (orally), Ketoconazole, Sporonox, or Diflucan. These agents are often needed for long periods of time and must be combined with avoidance of sugar and yeast containing foods if the individual is allergic to yeast.



I believe diet has a huge affect on our systems. My husband had a terrible problem this past year with a 50-cent-piece size fungus growing on his back. I never heard of it. He has diabetic tendencies when he doesn't eat well. He went on the Atkins diet, which cut out many of sugar-producing foods out of his diet. That area is improving. He did have many rounds of prescriptions, Diflucan being one. These kinds of conditions are tough. And I know a spot of fungus on a back is a lot easier to deal than having yeast in your nasal passages.

I don't know about meat sources in Canda, but here in the US most of the beef is fed antibiotics, which could be another problem to cause an increase of yeast in the body.

One more thing about doctors: I feel much better seeing a physician's assistant or nurse practitioner, especially if they are female. That is not meant as a slam to men. Doctors I've seen only want to provide a diagnosis and a prescription. Female PAs or NAs I've seen always want to talk to you about your symptoms and provide feedback. They've always taken time where doctors have not.