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Thread: Daughter here trying not to drop her basket

  1. #71
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    Quote Originally Posted by windchime View Post
    Not at all Lindsey. There are many here that have been misdiagnosed for years. In addition, he did have a positive ANCA and biopsy for granulomas if I remember correctly. You're just being realistic. Keep the faith and get some rest too.
    Thanks for the vote of confidence, Cindy. I've read numerous sources that say many lung malignancies are found on chest x-ray or chest CT incidentally (as in my Dad's workup for Wegener's), so I well understand that he could be a member of this group. It just seems so...coincidental, I don't know. The strawberry gum lesions, the constant sinusitis, sinus headaches, his dry cough (which has been nearly absent for over 2 weeks now), and the lung nodule that is typical of Wegener's are all fairly textbook WG.

    My Dad did have a positive ANCA, but the only biopsy he has had was from his gums. The pathology report from his gum biopsy basically said "suspicious for Wegener's." The rheumatologist is not satisfied with this report, because the terms granuloma or granulomatous was not used to described the tissue.

    As I have mentioned before, the pulmonologist is just so sure that it's a cancer tumor and he likely feels "backed up" by the PET scan. I'm glad the nodule can be biopsied (during our first visit he said it's too small). I will feel better about the lobectomy if the pathology results a positive though and it would surely squash my doubts flat.

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    Quote Originally Posted by MikeG-2012 View Post
    I've come in from the cold and blew out an obscene amount of crud, so I guess my answer is yes, the cold does have an effect. Seem plausible that the cold does reduce inflammation, and that cold air would make sinuses feel different after being out in the cold for a while.

    If he hasn't already, you should get him on a frequent nasal flushing routine. Go with the squeeze bottle type of rinsing devices, as they work 1000 times better than the trickling through netti-pots. Go to your local pharmacy and look for NeilMed product--that is the most common brand out there. Without my nasal rinsing regimen, I would be in serious trouble with the damage the disease has done to my sinuses. Was just at the ENT today, and he said the lining is continuing to improve at each visit, so I am to keep up my same rinsing activities.
    Mike, I just wanted to update you—my Dad started doing the squeeze bottle sinus rinses last week. He rinses first thing in the morning and at bedtime and this is making a BIG difference for him! Dad and I thank you for your advice!

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    Quote Originally Posted by LindseyRN View Post
    Mike, I just wanted to update you—my Dad started doing the squeeze bottle sinus rinses last week. He rinses first thing in the morning and at bedtime and this is making a BIG difference for him! Dad and I thank you for your advice!
    (insert evil laugh here) "I've converted another one!"

    In all seriousness, YOU MADE MY DAY!! I am SO GLAD that he is doing it and that he is noticing the difference. If it is helping and he thinks that doing it more often would benefit him, my ENT tells me that I cannot over-rinse.

    If he wants to save some cash from buying packets of saline mix, use 1 teaspoon salt (pickling and/or canning) and 1/4 teaspoon baking soda per liter of water.

    Tell him I'm proud! (-8
    MikeG-2012

    "You never know how strong you are until being strong is the only choice you have"


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    Lindsey, my pulmonologist also doubted that I had Wegs. There was no large nodule involved, just a lot of smaller lesions. He was proved wrong by a nasal biopsy. Sometimes they are just stubborn. I know of at least one person on here who had a large lung mass thought to be cancerous which turned out not to be. I think it turned out to be a rare, non-cancerous tumor. However she DID, and does, have WG. I would not give up if you think your dad may have it. As far as whether the mass should be removed, and under what circumstances, that is beyond me to judge. Best of luck, and continue to be persistent and proactive for your dad. Get a second opinion if you can and feel you need to. Although I guess you still have a biopsy to get results from. If your rheumy continues to doubt it's Wegs, maybe try a different one. I would think a biopsy of the gums would not necessarily be conclusive either way, and just the language that was used by the pathologist should not be a reason to write off the possibility. Some of us on here have really had to push to get a diagnosis.
    Anne, dx'ed April 2011

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    Quote Originally Posted by annekat View Post
    Lindsey, my pulmonologist also doubted that I had Wegs. There was no large nodule involved, just a lot of smaller lesions. He was proved wrong by a nasal biopsy. Sometimes they are just stubborn. I know of at least one person on here who had a large lung mass thought to be cancerous which turned out not to be. I think it turned out to be a rare, non-cancerous tumor. However she DID, and does, have WG. I would not give up if you think your dad may have it. As far as whether the mass should be removed, and under what circumstances, that is beyond me to judge. Best of luck, and continue to be persistent and proactive for your dad. Get a second opinion if you can and feel you need to. Although I guess you still have a biopsy to get results from. If your rheumy continues to doubt it's Wegs, maybe try a different one. I would think a biopsy of the gums would not necessarily be conclusive either way, and just the language that was used by the pathologist should not be a reason to write off the possibility. Some of us on here have really had to push to get a diagnosis.
    Thank you, Anne. I don't think my Dad's pulmonologist necessarily doubts he has Wegener's, he is just certain the nodule in his lung is not Wegener's-related. Maybe a little too certain? By that, I mean that before the radiologist told him a biopsy could be done, the pulmonologist told us during appointment #1 that he was ordering a PET scan and a lobectomy was sure to follow. I thought it was a tad early to make that decision. Now that the plan is for biopsy, the pulmonologist says that despite the pathology report, he thinks the lobe should still be removed.

    Today the rheumatologist said she is not concerned with getting a sinus biopsy until after the results of the nodule biopsy come back from pathology and micro. My Dad is relieved about that. He knows this is not something his ENT will be able treat, so he'd love to be able to mark that doc off his list! His (our) goal is to get his WG treatment progressing as soon as possible when we get his lung issue dealt with. He says he's willing to go to Cleveland if I thought it best, but doesn't want to go with the uncertainty of his lung nodule. Until then we must take it day by day.

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    I see that it is very complicated, Lindsey. Since I didn't have a nodule like that, I am not much of one to judge. If the biopsy should show that the nodule is WG related, then a sinus biopsy wouldn't be necessary, but I understand there is much doubt that this is the case. If no WG lung involvement is suspected in other parts of the lungs, and the nodule is not WG related, then it would be pretty hard to get a biopsy showing WG there, and I guess the sinus would be the only option. I'll report that my sinus biopsy was very easy, though not entirely comfortable, but done on the spot without any big to do, and it showed I had WG. My ENT did it but then referred me to someone else for treatment. ENTs are an important part of the team whether they are the ones treating it or not. I sure hope the lung nodule isn't cancerous and tend to support your feeling that the pulmy is jumping to a conclusion. But having it taken out, though stressful, is likely to be OK in the long run, I guess. I'm sorry you and your dad are going through this. I just hope it can be determined soon whether he has WG or not; I don't remember if he has already started treatment just in case, as some do, but I'd hate to see it delayed too long if he indeed has it. Not that I'm hoping he does. Best to you both in getting through this, yes, day by day.
    Anne, dx'ed April 2011

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    Certainly not to me. With other WG indicators present I think it is highly likely that you are correct though unfortunately they have to find out for sure. A lobectomy is major surgery but this must be the only option available to them. I will bee very surprised if it does turn out to be cancer as many of us have had that initial diagnosis. I was lucky in that a kidney biopsy confirmed the diagnosis of WG after a fine needle biopsy of the lung was inconclusive. Also a spirculated lesion seen 5 years later and reported as primary neoplasm in the lung was diagnosed later as scar tissue by senior Radiiologists who were able to compare past x-rays and scans. So there is hope.

    Rose

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    Now convert him to the Waterpik Mike.
    Phil Berggren, dx 2003

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