glad i speak a little german

[JanW]

Yes, I feel quite confident based on what I've read and seen on this forum that the people who are still dying from the disease really aren't getting the proper treatment, full stop. Hang in there Ian, and, if possible, try to find out if there are any more options for your stenosis. I'm not sure if yours was subglottic or tracheal (or both) but frankly, I've read about people getting balloons every month or so and it just seems to me that there has to be a better way (meaning, I know for a fact there is a better way, but there has to be some way that people in your part of the world can access that better way, no). If nothing else, it's not great for you to keep going under anesthesia so frequently. My ENT says that if he can even save me one surgery, by operating at the very last moment (right when it starts to affect my life, as opposed to recurring stenosis, which he can now see when he scopes me, but I can't yet feel), it will be worth it. As he says, as only a New Yorker can "hey, it's not nothing, it's surgery and the biggest risk to this type of surgery will always be death, no matter how skilled the hands."

[ian anderson]

I thought that the "50/50" comment was rather pessimistic unless he was talking about achieving full remission. There are some pretty sick members on the Forum and we have only lost the odd one or two over the years mainly due to poor diagnosis or treatment. If you are in the right hands, most people's prognosis is good these days even if they are quite ill to begin with.

yes ur right jack i think thats what he was saying i was at hospital today fri 23 july to see ent surgeon who dilated me he said much the same but warned too that team must act quickly as ts is moving toward lungs thats not good ill get further dilation next month aug 2010 thnx jack all th best Ian

[ian anderson]

Yes, I feel quite confident based on what I've read and seen on this forum that the people who are still dying from the disease really aren't getting the proper treatment, full stop. Hang in there Ian, and, if possible, try to find out if there are any more options for your stenosis. I'm not sure if yours was subglottic or tracheal (or both) but frankly, I've read about people getting balloons every month or so and it just seems to me that there has to be a better way (meaning, I know for a fact there is a better way, but there has to be some way that people in your part of the world can access that better way, no). If nothing else, it's not great for you to keep going under anesthesia so frequently. My ENT says that if he can even save me one surgery, by operating at the very last moment (right when it starts to affect my life, as opposed to recurring stenosis, which he can now see when he scopes me, but I can't yet feel), it will be worth it. As he says, as only a New Yorker can "hey, it's not nothing, it's surgery and the biggest risk to this type of surgery will always be death, no matter how skilled the hands."

tnx jan yes there are other options there is stenting but according to my german friend the sructure of those type of stents are unpredictable then theres resection thats where they cut away the trachea thats got problems but in their eyes what happens when it comes back and in another spot of the trachea so big problems the trachea is not as long as you think so what else is there tnx Ian xx

[JanW]

I think stents are also really problematic because granulomas can grow around those foreign bodies. I've not read recently of doctors suggesting this method, at least in the U.S.

Is there no way that they can cut into the tissue -- not a resection where they take out a bit and then tie the two ends together, but rather cut through the scar tissue to make the actual opening larger? That's what they did with my subglottis, but obviously the anatomy is different than the trachea.

[Doug]

Dear Ian - On the third anniversary of my diagnosis of having WG, I reminded the doctor who made the diagnoses that on that occasion he had told me, "There are three autoimmune diseases you may have. Until we do some biopsies to verify which one you have, I believe you have Wegener's granulomatosis [which he briefly described and explained], and you will be dead within two years." May you be blessed with a bad prediction, too!

[ian anderson]

Dear Ian - On the third anniversary of my diagnosis of having WG, I reminded the doctor who made the diagnoses that on that occasion he had told me, "There are three autoimmune diseases you may have. Until we do some biopsies to verify which one you have, I believe you have Wegener's granulomatosis [which he briefly described and explained], and you will be dead within two years." May you be blessed with a bad prediction, too!

lol tnx doug i hope ur right i do know that ive got wg and lived with it for many yrs 15 altogether so im very optimistic tnx a lot Ian

[drz]

I thought that the "50/50" comment was rather pessimistic unless he was talking about achieving full remission. There are some pretty sick members on the Forum and we have only lost the odd one or two over the years mainly due to poor diagnosis or treatment. If you are in the right hands, most people's prognosis is good these days even if they are quite ill to begin with.

Are the people on this forum though typical of most people with WG disease?

There is a strong emphasis here on people seeking care from physicians experienced in treating WG, plus members seem very actively involved in their care and treatment.

Could these things contribute to a better prognosis for our members here?

[elephant]

You pretty much have to be persistent and active in getting this awful disease into remission. One way is to go to a Wegeners specialist who has seen hundreds of WG patients. I would not want a heart surgeon operating on me ( heart surgery) if he only did 5 patients in one year.
I now ask my doctors how many patients have you treated or did surgery on.

[pberggren1]

drz, you have to be your own best doctor and do lots of research and ask questions on the forum.

No one else, not even a good doctor, is going to do that for you.

[JanW]

drz - I've often thought that our members are the best educated patients with this disease out there (at least out of people who use internet forums at all). That having been said, I think our members are also likely sicker than the average patient and less likely to be in remission at the time that they are most active on the board. If your disease is discovered and you are treated rapidly and successfully, it stands to reason that you don't need the support that internet forums provide.