update from my doc appt friday

[firecracker]

I saw my ENT friday. They got the results of my ct scan 3 weeks ago. Comparing it to last September, bone and muscle destruction in my right cheek, jaw, and skull. He did say that the inside of my nose looks better than last month and that he was glad i went back on the prednisone. I have to get a 3 phase bone scan with nuclear medicine?(anyone had this.. im guessing yes) I havent looked it up yet but will try to later today. He thinks I may have a bone infection, bacterial or fungal, that is doing this damage and wants to stop it asap if so.. of course. The report said .... interval development of destruction of the posterolateral wall of the right max sinus with inflammatory changes extending into the muscles and mastification in the pterygopalatine fossa. this is new since last study. interval pregression of destruction of the anterior wall of the sphenoid sinuses.
This was not easily heard by my ears of course. Thing is, the destruction and bone pieces i had come out were back in last october when I first got on the mtx. The pain however.. that was getting better starting like jan of this year and off and on comes back was really bad in july and part of august, has again started going away. I am actually sleeping thru most nights. ill just try to stay positive.. or try to start thinking positive. i mean, i am about 80 or more percent better since last year this time. Its been a year since the Mayo clinic now. Time flies. wow. I am still curious about this bone scan thing. I have had a dex one done which showed i have geriatric bones and this was after two or three months on the mtx. I know this is a diff scan but injecting whatever that stuff is.. sounds a little weird.

[Sangye]

Here's a little info on that type of scan. It isn't a typical scan for someone with Wegs, as Wegs doesn't destroy bone or muscle. Did your ENT actually show you on a model skull what is happening and where?

Osteomyelitis (bone infection) is one of the most serious things you can have. Extremely difficult to treat and the potential for further bone destruction and spread to other tissues is very high. It's bad enough to have a bone infection in an extremity, but so close to your brain is unbelievably dangerous.

When are you getting the scan, and when is your next appt to hear the results? If both aren't happening within the next week, I would urge you to do whatever it takes to make that happen.

Even if the bone destruction has stopped, the remaining bone is structurally not intact and may require corrective surgery to prevent it from collapsing and/or jeopardizing the brain.

With these results, I cannot emphasize enough that you need to consult a highly trained ENT. If it were me, I'd be on the phone with Mayo tomorrow. That probably isn't what you want to hear, but it'd be irresponsible of me to tell you to wait or just stick with a local doc.

[jola57]

I too strongly think that a consult with Mayo is of the highest order. This can be helped with surgery and implants if necessary, but again someone with a good knowledge of WG has to be consulted and work with the ENT/Surgeon

[firecracker]

Thanks both of you for your replies. The ENT I am currently seeing is at USF (university of south florida). Since the mayo clinic is about 5 hours away, the doctors at the mayo clinic advised me to find a doctor at usf to see monthly or when i needed any urgent type care as well. The ent i have treats wegeners and fungal infections as a specialty. He treated a girl with fusarium right after I got over my fusarium infection. He said her nose looks just like mine, just not as bad. He saw a wg patient very recently who had bone destruction sort of like mine but upwards and had a fluid leak from his brain cavity so i def feel like i understand the severity if i do have some type of infection. My white blood cell count including the breakdowns dont show any infection for the last two months i had blood pulled. I am getting more pulled tomorrow and seeing my rheum next tuesday i believe. my rheum is not at usf.i could not find a rheum taking patients at usf except one doc that i saw maybe three times then dumped her. she was ridiculous. She is actually the doc of the patient with the brain fluid leak and the ent was extremely displeased to put it mildly with her and her "treatments". he said the same thing i did about her blowing off every symptom saying "you need to see your .. (dermatologist, ent)" whichever type of issue it was and just kept talking to me like a i was a stupid small child. she is the one that said i had some lung change and needed to see my pulm asap. i had to wait like 4 days... plus a weekend to find out... nothing. there was no change. all good still. so i was really upset with her and fired her. anyway, i am currently in search of a weg specialist or vasculitis specialist that is in my area.. that is accepting new patients. i waited three months for a new pain management doc to find out he quit and didnt tell me. he opened a new practice not far from usf and didnt bother to call me so i am again on the look out for a new one. my old one is beginning to be greedy with money and not caring about his patients waiting 3 hours to get in ... with an appt. i have limited time to call around during "open" hours to find doctors and find out not only if they take my current.. united insurance but in january my work is switching all employees to blue cross blue shield ppo. great... more money to pay to these docs that are millionaires. i must mention this funny little thing from saturday. i got a card from cvs thanking me with hand written signatures for my business. I spent almost $13000 there last year in medications. They were nice enough to give me those gift cards when you bring in a new prescription, even if it was not a new one. they gave me over $500 in gift cards last year because they felt bad for me i guess. i guess that is a benefit of being helpless and sick lol. ok im really trying to not ramble on but.. lol.... so about the scan. they are ordering in the medicine they have to inject then calling me to set up the appt asap. I know the ent said he is doing this just to rule out infection of the bone. I havent had a scan since last september so the destruction could of happened anytime between then and now. im not sure how i will get this scan done without missing work but i will try to talk to my work and see if they will let me leave excused/non paid for part of it. the other parts i think i can do in the timeframes that link is saying without missing work. good thing is, i am now under 2% absence rate so if i have to miss work for it, i wont get fired now. and if they dont let me have the excused non paid time, i will make sure they feel guilty about it telling them what could happen if i dont get the scan. i know i really should drop everything and go now and i know if i was having some major issues that were making me unable to work, i would drop everything and go. i just cant take the chance of losing my job unless something bad comes back on it and i have to go into the hospital for emergency medication, etc. i just really would like to stay in denial and wish it all away. this sucks. I have a question for all you experts here (since most of us know more then the docs do). My boyfriend was mentioning that he got burned really bad once in a fire and he had plasma coming out of his arm where a giant blister had been if i remember what he said correctly. he said what i describe comes out of my sinuses sounds exactly like plasma. i looked online and it is exactly the same color and acts just like the same stuff that came out of his burns. do you know anything about plasma and sinuses? or would this be way off? i mean i know you are not doctors here but still, like i said... i think we all know more then some of them do. lol

[firecracker]

I just got the call and my appt for the scan is this thursday. They are doing an 830am injection, then another at 845 then i come back at 1 for the scan. They are not doing the Indium one unless they feel necessary after looking at the first scan.

[Jack]

I can do little more than send you my best wishes and thank God that we have a free National Health Service and a degree of job protection here in the UK.

[jola57]

Good luck on thursday, tell them to go easy and take their time with the injection.

[Doug]

Yes, it can be unpleasant if given too fast.

[firecracker]

I got to my bone scan appt thursday to find out that they really do indeed want to do the three different scans instead of just two. I did a few quick ct scans then went to labcorp for my rheum doc then back to usf for the lady to pull a huge thing of blood from me and two little tubes also. They sent them to the lab to pull the white blood cells out and put the indium into or on..them, then i went back a few hours later for more scans, then she put the maybe tablespoon amount of dyed white blood cells back in thru the iv she left in and said come back 8am sharp in the morning. i ended up with one hole in my right arm and two in the left and a bunch of bruises on the left one from my "generous vein". lol. besides the .. i dont know... half a quart it seems like, of blood she had taken, and the other .. i dont know... 5 tablespoons that shot out of the iv on the floor.. i was a little dizzy but i actually had red blood for once instead of "chocolate" blood i have had for awhile. obviously not anemic for once in my life. yippie. they did a full body scan at 8am then the "obnoxiously" close ct bone scans. they took about hour and 15 mins total twice and maybe 30 or 40 mins the first set. talk about sore and hurting.. just from laying still for so long and laying flat which i normally cant do. so im waiting on the results. ive felt decent for a few days. i got home from work today and found a pretty big loss of tissue in my nose after the huge loss.. came out with rinsing. talk about ruining my day. i dont see or feel inflammation in my nose. it doesnt hurt much at all in fact for once but this really makes me .. depressed. like.. i instantly grabbed a beer. i know its not a good thing with the meds or for emotional distress. good thing i dont really like alcohol.. the taste of it yuck. i feel so bad for my boyfriend having to put up with me being sick or not being able to do .. much at all, go out in the sun, sleep laying down like a normal person. i went from feeling emotionally happy for once to wanting to cry like i just lost my best friend. this rollercoaster.. sucks. i cant imagine what will or wont come back on the scans. i want to know... but then again.. its like.. what else!!!??? at least my eating binge from getting back on the steroids has let off some. so anyway.. ill update again hopefully tomorrow. then again.. the longer it takes to find out .. the better the news im sure. my boyfriend led me to his sisters friends or someone she knows.. story. in case you have people like i do that just dont understand what it feels like to live like we do.. here is a really good story to explain. http://www.butyoudontlooksick.com/na...poonTheory.pdf

[Sangye]

Good luck with your test results. You can call them every other day and see if they're ready. Don't assume that longer is better. Longer can mean someone forgot to tell someone else the results are in....

I love the Spoon Theory. I've used it with a lot of my friends to explain how it can be with Wegs. Easier to just tell them I'm on my last spoon than describe it in more detail. I like the website too, but do think she's gone a little overboard about making everything in her life about her illness.