Submanbular gland Nightmare

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Hi everyone, Im new here. Apart from many other illnesses and issues. One of them has been my salivary glands. Its been about a year or so of swollen glands (or so I thought) for approx. 2 weeks out of a month, and then going down. Its worse coming up for an evening time. About 4 months ago, they came up and never went down, very painful and increasing my problem of dribbling and not noticing. Eventually I went to my GP, who sent me to see a Consultant in Haematology. After blood tests Slightly raised white cells and slightly lower red blood cells, he sent me to have an ultrasound. Which showed a nodule on my Thyroid. I was referred to an ENT, who told me that seem as though its small I could have a fine needle biopsy. I went for my biopsy at a different hospital, they told me it was too small to worry about and within their guidelines of being within what they call normal parameters. But, they found there was actually 2 nodules, and has anyone ever mentioned my salivary glands? I said no, and I heard them discussing my ultrasound they had been performing. That they look completely wrong, speckling was mentioned and that also lymph nodes in the cervical area at the front on my neck were visible. He explained that in children they are visible, but as you age they in this area tend to shrink and arnt normally visible. Approx 1cm in size, but I don't know how many they can see. I asked them to biopsy them then and there since they wernt going to biopsy the nodules. But they said it would just show Chronic Inflammation. No mention of stones etc.  The rude ENT Consultant I had seen hasn't requested to see me again despite the findings, so im waiting to go back to haematology, who in all honesty don't know what to do with me as its really not in their field now. Im left with all this pain, difficulty in breathing when the inflammation is at its worst, choking on my own saliva, dribbling, which seems to be burning the sides of my mouth when it runs out, leaving it dry, sore and spotty, does saliva do that? But the weird thing is, first thing in the morning, apart from having a soaked pillow, which I have to turn over during the night, not being able to get comfortable laying down as not only it is painful, as well as two stripes, so to speak, down the back of my neck hurting. My lungs feel like paper and so dry first thing? At night I get so thirsty too, I can drink pints of water. Plus I itch all the time too. Does any of this make sense to anyone and can anyone help me, also, is it ENT's responsibility to deal with me, or someone else now? Please can anyone help me, Im desperate. Thank you in advance. Tania

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5 Replies

  • Posted

    wow- none of that sounds "normal" I think changing doctors is first- where is the swelling in the salivary gland? are there any lumps you can feel?

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    • Posted

      Hi Stacie, Thank you so much for replying and I know its a very long winded post. I have thought of changing doctors and will be once I speak to my haematologist Con in Nov! He is a very nice man and his Secretary and him, between themselves have tried really hard to get the results and look at them to see where I go from here. The ENT Consultant I was referred to is a nasty, self absorbed and rude man. I thought at the time I was going back to see my haematologist Cons and when I was called in by him, before I even had time to sit down, he said, "Ive no idea why you've been sent here to see me...." and it went downhill from there! He, based on the ultrasound results hasn't asked to see me again. Why, I don't know!

      My neck feels lumpy and swollen all the time, yes in the salivary gland area and at the front where my windpipe area is. Its so painful all the time and it makes it difficult to breathe, between choking on my own saliva. They did say the salivary glands had speckling and there were 1cm lymph node swellings at the front of my windpipe area. The pain goes from behind my ears, along my jawline and one large swelling under my jaw in the soft area and down the sides of my neck. I don't know if this will be a maxi facial area or ENT area. I have no idea who it would be who can deal with this? Its constant and really getting me down.

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  • Posted

    I read so many stories like this I’m not sure why people have such a hard time with doctors. I’m sorry for that. I got very lucky and my ent and oncologist are amazing. I’d love to hear an update from you...in the meantime you should seriously check out the Facebook page i mentioned. Take care!
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    • Posted

      Thank you Stacie, I guess some of us are unlucky in who we get referred too. I will update once I've been to see my Consultant in November. Im just glad you are being looked after well and hopefully those of us who arnt, that we will find the right person in the end. Thank you so much. What Facebook page is that honey? Ive re read through the replies and haven't seen the page you've mentioned. Please take care of you too and please let me know how you are getting on.

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    • Posted

      Facebook page is called Parotid People....worth joining for sure! I’m  hoping for the best outcome for you, look forward to hearing some good news next month 😊 take care of yourself!

      Stacie

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