Soft Palate involvement.

[Titus3:2]

In 2008 I had finish some fried rice,and could feel something in my nose.Much to my surprise it was a little of the fried rice.Looking into the mirror I could see a pin hole in my soft palate,and a good portion of the area was inflamed.The next day I saw my ENT doctor between O.R. cases,and she confirmed the tiny hole,but was reluctant to do a biopsy of the area.She was concerned that it would only create a larger hole.That evening I was seen by Speech and Swallowing.I was taken to radiology and giving some pudding to eat while some type of radiology was used to capture the fistula in my soft palate.After careful consideration Pulmonary and ENT strongly believed it was GPA again,and never wavered from this belief.Rheumatology was not so sure.My Rheumatologist ordered ENT to biopsy the area on more than a few occasions,but ENT refused to do so because of the fragility of the area.By the time I was treated with six months of IV Cytoxan there was little left of the soft palate.I was then placed on Cellcept as a maintenance drug.ENT was charged with keeping an eye on the area.Taking photos for the record.A new ENT took over the case,but dropped the ball on realising tissue was decaying in the Pharynx area.I saw him last August and complained about it.Falling on deft ears.In September my dentist without any words from me was alarmed at the change in the pharynx ,and ordered me back to ENT.ENT still showed little concern,and told me to come back in a month.Well,I did not go back until yesterday.I had a hand written statement describing what had happened to my soft palate in 2008,and how it was treated.The letter also stated I wanted a definitive diagnosis on the continued tissue lose in the area.When I checked in at ENT I had this statement recorded on my permanent records for all to see.Yes,this got his attention.That and I had my girlfriend the O.R.nurse with me.He now believes the GPA is active,and is causing this disturbing damage.A CT Scan has been ordered for this Friday,and he will come up with a game plan thereafter.I do still have my hard palate.Thank goodness.

[Dirty Don]

I'm not sure 'let down' is the correct phrase as mistakes are continuing with this disease and the docs handling it. I'm glad they caught the 'hole' in time maybe...some of that kind of damage can be repaired. We only experience letdowns cuz we create expectations...I'm very glad you got help & woke the doc up. Best to you!

[Alysia]

Dear Keith, I am sorry for your new "gift". docs are so ignorant. wg sure causes holes and perforations. I guess Phil's hole in the lung was wg created. like the hole in the colon in the case of Dodi's daughter, if you remember her case. like our saddle nose. it "eats" the tissues. I think that when a hole is found, it indicates wg activity so it is good that your doc also think so and I hope he will treat the wg as strongly as possible. hang in there. its a crazy roller coaster. better days will come soon.
p.s. will send you pm.

[annekat]

I'm sorry, Keith. I found myself sticking my tongue back in there to make sure my soft palate is still there. And I'll be watching for bit of food in my nose. Hearing of others' issues is valuable, reminding us once again of the seemingly infinite number of ways that this disease can attack us. I'm just sorry it's you going through this, you have been through enough already. I hope they can save your pharynx. The way you handled this, with the letter recorded in your files, was smart. The ENT should have listened to you in the first place, since you are the one with all the experience in this disease and you live with it 24/7. Thank goodness for your alert and observant dentist.

[debra]

Keith, hello... Keith I'm sorry you're dealing with all this additional crap! It's never boring, right? Thankfully you got their attention, though we should have it, without a fight! Makes me so frustrated... Keith i have mouth involvement as I think you're aware, so this scares me... My mouth involvement is pretty extensive, so I'll be glued to this thread to see how you make out... This sickness trully sucks, but stay optimistic! Hopefully God willing, you got this in time Keith... I believe you did... I'm praying for you, my friend... Please keep everyone posted? Debra...

[Titus3:2]

"We create expectations" Very true.I shouldn't have expected anything,but now I am faced with something worse than living with no soft palate.Which I had gotten use to.The tissue covering the spine in the pharynx is very thin.How could any doctor just ignore this whatever the cause.Yes,now he is onboard,and is reporting it to Rheumatology that he believes the GPA is active.Hey , I haven't had nachos in years.LOL.I am very grateful to the dentist for taking a very serious interest.I ranted all the way home from the docs office,and I shouldn't be slandering anyone.I have done plenty of stupid things.Thank you ,Ann,Alysia,and Don.

[Titus3:2]

Hi Debra,thank you for your support.I remember you,Birdie, and C.J. have mouth involvement.Maybe I shouldn't say rare anymore.This disease is unpredictable.I wouldn't be glued to this thread.My handling of docs is not too good.Take care.

[debra]

Keith, hi. Keith letting out frustration is a healthy normal thing, so let it out! You are lucky, as was birdie for getting the dentists attention. More than what I could do... I remember, almost four years ago now, begging her to send me for a biopsy, she took an exray, instead? I predicted to her, down to the horrible detail, what would happen, but she was busy, never heard of wegeners, its rare, blah, blah, and blah... Last night I'm sitting here emailing a friend, and my top tooth, started feeling weird, and I just stopped, and said, God, please let me keep this one last molar, on my bottom left, and my top teeth! How am I gonna chew food, if I lose this? I won't be! And food is pretty much my only fun, right now! Haha... Back to you, Keith, I'm confident you will be posting good news soon, and I'm sorry for the set back... I'm craving nachos now, Keith! Debra...

[Alysia]

"We create expectations" Very true.I shouldn't have expected anything


You must be kidding, you & Don, or is it my English.. ??
I got mad at those docs. No expectations ? I only expect ANY doc NOT to neglect his patients... not to be so arrogant & ignorant at once.. not to lead the patient to damages that he could have prevent... and I dont even start to talk here about causing death (here, I just did. You all know why I am furious)

Don, what's up with you ? Not enough coffee ?

[Alysia]

Ok. Deep breath... I also wanted to say that dear Barbara also had the wg destroyed her palate http://www.wegeners-granulomatosis.com/forum/new-member-introductions-stories/2959-hello-spain.html

[annekat]

Alysia, I think you are right to expect good care from docs, because that is the way it should be, and you are right to get mad at them when they neglect or don't listen to you. I think Don and Keith were just stating, unfortunately, the way it is, so many docs do fall short in how they follow through with patients' cases. I think the sad fact is they just can't or won't devote the time necessary to treat patients the way they should be treated. There are some docs who are exceptions, and those of us who find them are lucky. That's the way it seems to me, anyway.

[Titus3:2]

Ann,you nailed it,and thank you.I am pretty laconic,and may leave the wrong impression sometimes.Alysia,I am sorry I upset you.I think we expect doctors to be different than other professions,and that is a false expectation.There are good ones and not so good ones.I had not read Barbara's Hello from Spain,until now.Sorry again.

[Jaha]

I understand your irritation for not getting the proper attention to your latest unpredictable Wegener's damage. I really believe that evener the best of Wegener's docs are really surprised sometimes by what can show up on us next. I know mine always seems to 2nd guess me when I tell her something new that I feel is related, it really doesn't set well with me either, and she is supposed to be one of the best. I just really hope that they find a very restorative treatment for your palate involvement. Please keep us informed on your condition, take care of yourself.

[Alysia]

Dear Keith. No need to be sorry. You sure did not upset me. Sorry if I did. I sensed the irony in your words but was not sure, also about Don's words. I just cant accept peacefully those neglecting docs... when I was getting angry at the hospital at some of them, Phil used to say (with his cute smile) : "whew, I am glad you are by my side... "
P.s. I sent you pm yesterday as well. Hope you got it.

[Titus3:2]

Jana,it must be a great comfort for you to have such a prestigious doctor.I will let you know how this plays out.I might end up blowing some money,and going back to the Mayo Clinic if this situation moves to slowly.Nice seeing you.

[Titus3:2]

Alysia,Phil was lucky to have you at his side.We know you to be tenderhearted ,and tolerant.You can be a force to be reckoned with,if the need arises.It would not have surprised me had you been escorted out of that hospital by security guards.Thank you for the P.M. P.S. your English is great.Wish mine was that good.

[drz]

Alysia, I think you are right to expect good care from docs, because that is the way it should be, and you are right to get mad at them when they neglect or don't listen to you. I think Don and Keith were just stating, unfortunately, the way it is, so many docs do fall short in how they follow through with patients' cases. I think the sad fact is they just can't or won't devote the time necessary to treat patients the way they should be treated. There are some docs who are exceptions, and those of us who find them are lucky. That's the way it seems to me, anyway.

I think sometimes we need to replace those doctors that don't seem to have the expertise or motivation to give us the care we need to trust them and feel comfortable that it right for us. Sometimes there can be a difference in philosophy of care or prefered goals and approach to our health issues. It also behooves us at times to seek us additional consultation and second opinions at times with our doctors blessing, or without it if necessary, when we have disconcerting symptoms. It is our responsibility to try get the best health care we can within our healthcare system. When we have a good history with a doctor we trust and have to replace them, it can be a stressful event. I replaced one yesterday and will see some other new ones soon to get their opinion on a new symptom.