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Parotid Tumor

Discussion in 'General Treatment' started by john66, Sep 21, 2011.

  1. john66

    john66 Senior Member

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    Hi Everyone, I was curious if anyone else has any experience with a tumor in the salivary gland. I had an MRI with contrast, which showed a 2cm tumor in my left salivary gland. I have had this thing for a for at least two years and can feel it while shaving. The standard procedure is to do a Fine needle aspiration, and then have the tumor removed. Not really excited about either and asked if we could just go straight to the surgery if it has to come out anyway. Each time I set foot in a hospital, I have a $1000.00 copay. I have been in a flare since July, and don't know if I have any energy to go through this right now.

    The ENT said this may come from viral issues. I dont think he is much of a believer in CFS. I will ask Enlander if he has any comments and what his thought on having surgery is. The ent doctor said the major risk is nerve paralysis of one side of the face and it usually never happens. If you dont take it out, it could develop into a malignancy. He also said that 80 percent of these things are benign. It hasnt changed or grown in a few years so I'll see what Enlander says and go from there. I am scared to do any surgery, because I feel I will go further downhill. Has anybody had any other type of surgery while having this and if so, how did recovery go???
     
  2. Ember

    Ember Senior Member

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    Yes, I've been there. A needle biopsy is often not conclusive, so surgery was part of my diagnosis.
     
  3. Francelle

    Francelle Senior Member

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    Victoria, Australia
    In Osler's Web there are many references to parotid and other oral/ jaw tumours as categorised by Cheney, Peterson and others in patients with M.E.
     
  4. Boule de feu

    Boule de feu Senior Member

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    I got 3 lumps they had to remove, one was pretty close (embedded?) into the thyroid gland.
    It was not a very pleasant experience to live and i remember how nerve-wracking it was. I had to wait for the biopsy -- it took forever! I didn't know I had ME at the time. It might have triggered some symptoms but I probably blame something else for it. Another lump just showed up last fall and we decided to wait and see if it would grow more. I'm not too happy with the wait. So far, I can feel it and see it in the mirror but it's not bothering me. They also found something in my right breast. I have to go back for a mammogram in October.

    I hope everything goes well with you. Try not to worry too much (easy to say!) ahead of time. I try to forget about it. I can't control it anyway... Good luck. Let us know how it goes. ;-)
     
  5. ahimsa

    ahimsa Sick since 1990

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    Oregon, USA
    surgery tips for ME/CFS patients

    Re: surgery tips for ME/CFS patients, my biggest suggestion applies to patients who have trouble with blood pressure dropping, e.g., NMH patients (not all ME/CFS patients have this). I have NMH so I discussed this problem with my anaesthesiologist before my last surgery.

    I don't know all the exact changes he made but at least he knew that I had reacted badly to anaesthesia in the past and he was willing to try to make adjustments. He also added a Scopolamine patch behind my ear (http://www.rxlist.com/transderm_scop-drug.htm) that eliminated that terrible nausea that I had felt in the recovery room after my previous surgery. It was so nice to wake up without nausea.

    Best of luck to you whatever route you choose to go. Sorry I can't give you advice on your specific problem but I hope my tips about how to make recovery from anaesthesia more bearable are helpful. I have a vague memory of reading articles about ME/CFS patients and surgery but can't find them right now.
     
  6. john66

    john66 Senior Member

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    I didnt know what Osler's web was up until now. Maybe I should look for all possible surgeries and hospital procedures so I can get it all done in one copay to the hospital. I had to go there today to schedule the FNA, just impossible over the phone. I know you should get a second opinion in a situation like this, but at this point, I just don't want to waste the energy or money.
     
  7. *GG*

    *GG* Senior Member

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    Have you heard of LDN (Low dose naltrexone), it is supposedly used for Cancer, and many people with CFS and Fibromyalgia etc.. us it. FYI

    GG
     
  8. john66

    john66 Senior Member

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    I tried LDN twice, the first time I had a better reaction, the reason I went off was that my cholesterol jumped significantly. I already have familial hyperlipidemia, and dont need help going in the north direction. The second time, I just blew off the test for a while and stayed on it at 1 mg for two months. I didnt notice any increase or decrease in the size of this thing in my neck. I read so much about LDN and was so hoping that it would work better for me. I felt more physical pain and when that happens, it makes mental state and sleeping all that much worse. I wish I could take a pill for more stamina or sticktoitiveness. When I get that heavy, dizzy nervous head, I give in.
     

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