Discouraged by ENT Need some advice PLEASE!

Discussion in 'Fibromyalgia Main Forum' started by Nancy39, Apr 24, 2003.

  1. Nancy39

    Nancy39 New Member

    Hi Everyone,
    I went to sea an Ear, Nose and Throat specialist today in hopes of finding out why I have so much pain under my jawline in what is I am assuming to by my lymph nodes. I have had chronic sinus drainage and headaches for years. It is worse when the weather is damp, windy or humid.
    Well..... I could not believe the response I got from the ENT! I can only assume that the doctor who referred me told him that he thought I had depression. Because... I had no longer sat in the chair when he was telling me that he really did not think that my sinus was my problem. He only asked me a couple of questions pertaining to my sinus pain and problems. He looked briefy in my nose and throat and preceded to tell me that he was almost certain that my headaches where- "just headaches, We don't know the causes for these things." and that my neck pain and drainage, etc where the result of my reflux. How can he assume so much with almost no examination or questions. He did not even tap on my sinus areas. If all of this has nothing to do with my sinus then why is it so effected by the weather changes? He did order a CT scan of my sinus - I guess just to humor me and told me to come back in 3 weeks. I don't want to go back and I don't want to have the CT scan done if it is not necessary. I asked about my painful and swollen lymph nodes and he said he could not feel any swollen lymph nodes (he barely touched me) he said the pains I am feeling in the front of my neck are probably actually my throat and the pain was from reflux. It all does not make any sense to me. I know that the pain I am feeling is directly where my lymph glands are under my jaws and sometimes I can feel them. They are not very large, but I know they are enlarged. I also have pain in the muscles under my tongue and in my neck area right under my chin. Doea anyone else experience anything like this? Could it be from grinding my teeth and clenching them at night? I don't know what to do now. Please give me some advice. I am very discouraged. I was hoping for some answers from the ENT, instead I just got more confusion. He also went on to tell me that lots of people have neck pain and they don't know why. There is a term out there that he wishes did not exist--- it is Fibromayalgia. He said people have had these pains for years and now they want to call it that. He has a friend who specialises in Fibro and you know? He says it all comes down to depression. Well that just sealed the deal for me. I am sure he had talked to my previous doctor. I am not depressed! I just want to know what is causing this pain.
    Thanks for listening and sorry for the long post. I just needed to vent I guess.
    Hugs to all, Nancy
  2. nancyneptune

    nancyneptune New Member

    He did get the depression from your other doc. I have all my records, and the way they talk about you is ridiculous. We are women, hysterical and everything is all in our heads. We'll never get beyond that until all the doctors in med school are trained correctly. I was told when I was 22 that I had TMJ. I'm sure you do too. But instead of treating you for that, he dismisses you. You must dimiss him.
    I have fired so many doctors it is unbelievable. But I will not tolerate being treated like a nut. N
  3. Plantscaper

    Plantscaper New Member

    that I finally consulted an ENT doc, and I did not get much satisfaction, either...and the Catscan on the Sinuses did not help and did not end my problems..

    Finally, I found an end to the sinus infections, and when really bad, the brain inflammation this year with Olive Leaf Extract...The is my worst season of the year, and I do not have the constant mucus blockages and resultant migraines because the OLE has solved my problems in that area...

    This may not be exactly what you are referring to, but I did have swollen glands in my neck area and in the throat area..Just give OLE, a try...It is working more miracles, relative to my CFS than ever before..Sinus problems are the first thing it tends to work on...See the discussions on the posting: Discussion on Improvements on Olive Leaf Extract...

    [This Message was Edited on 04/24/2003]
  4. MemoryLane

    MemoryLane Member

    My mother had a stone develop in one of her salivary ducts - It was about the size and shape of a lima bean and very painful. An Oral Surgeon removed it for her and it was smooth and looked something like putty colored sandstone. Very curious - I never knew this could happen, but there you go.

    Hope this is helpful,

  5. pearls

    pearls New Member

    I've gone through a number of ENTs, myself. Now I'm in the process of making sure I have the right primary physician, since mine simply moved, leaving me with no knowledge he had even left until I was sicker than a dog with pneumonia and had to find out the hard way! So, after that episode, I talked to my pain doc concering a new doc coming to take the old one's place, telling my pain doc I didn't want a physician who was right out of medical school, since with this fibromyalgia and everything I've been through, I certainly don't want to be somebody's practice patient.

    What he had to say to me may be of some help to you if you should decide you need to find a new ENT. He said, 1) that the doctor WON'T be right out of medical school. There will be up to ten years of residency, during which time he'll get a lot of practice. Since this new person will be an internist, he will be a specialist, and that means he will have more training than a regular doctor. Then he said, 2) that the best doctor you'll ever have will be the one right out of residency. That's because he will be up speed in the latest medicine. In fact, anyone who's become a doctor since 1985 will be a superior doctor, because starting in 1985, all doctors have had to go back to school regularly for training.

    Well, now I think I'll be more open to young doctors than I was before - and you may wish to consider that, too. I hope for you that either this doctor works out better than you think he will, or that you'll find a good, new ENT who will help you deal with these problems. But, I'm with you on one thing for sure: to say that your fibromyalgia problems are all there because you are depressed is really "out there." If we ARE depressed - I say, "If," - it's because we hurt so bad! THAT's the kind of depressed we are! We also have a devil of a time trying to find doctors who understand this and who can actually help us.

    Soft hugs,
  6. starstella

    starstella New Member

    I feel like I'm always giving responses about muscle trigger points, probably because I've had a lot of physical therapy in the past year. Try to get a hold of Devin Starnyl's bood about fm, or Claire Davies book about Trigger Point therapy. You can find info about both books on D. Starnyl's website. Anyway, there are trigger points that run along the sternocleidomastoid muscles along the sides of the neck. These trigger points can cause lots of problems in different areas of your head and neck, including under your chin, with symptoms including sinus drainage. Your tongue is also a muscle, so trigger points in the neck area can affect that also. In the Davies book, there are lots of examples of people who do not have fm who have been helped by trigger point therapy. For that doc to write off your complaints as depression is terrible. Hang in there.
  7. Alicensk

    Alicensk New Member

    Nancy, I have painful parotid glands at times because I have Sjogren's Syndrome. These are your large salivary glands -- the ones that swell up if you get mumps -- and start behind the bottom of your ear and go down along part of your upper jaw. When my parotid glands are painful, warm wet compresses help. And so does massage. Some people get small stones in their salivary glands, or a plug of mucus (in the case of Sjo. patients). My parotids don't swell, but they do hurt. Hope you can find a doc that will be more helpful in figuring out what's causing your problem.

    Alice N.
  8. kckitty

    kckitty New Member

    nany I can just tell you from my experience a few years ago-I thought I was losing my hearing and went and got tested-they said my hearing was fine-suggested going to dentist-VOILA!! I was grinding something awful at night-
    that was when I was going thru my heavy drinking and no eating faze-when I quit drinking I went to the doctor one time cuz I couldnt figure out why my nose was clossing up etc- I dont normally have sinus problems- so he takes a look and said that I had a hole the size of a nickel in my nostrils!! shock! I use to smoke alot but quite 10 years ago-i quite drinking 19 years ago and only did maybe 1 of those first years I used coke-so dont know if that could be part of your problem but I( was shocked to find out how all that past drinking/smoking/coking from almost 20 years affected me now- dont know if that helps but strange stuff happens when we all age!
  9. 2girls

    2girls New Member

    I have been going thru the same chase for the past year. Last May/02 the tingling, numbness started in my mouth, tongue, lips, chin, jaw, neck, throat - on and off. I have seen 3 ENT'S since: one was concerned with what he thought was a jaw cyst (turned out to be nothing), 2nd told me to see a psychiatrist (charming!), the 3rd told me it is a muscular thing. I do have a problem with TMJ and wear a splint to relax my jaw muscles but it does not work too well. I too have the swollen gland feeling but according to the doc they are not swollen. I get repeated sinus/throat infections from the post nasal drip build-up. I still have all the same symptoms, but it seems lately that one side of my throat/soft palette/tongue are weaker (left side). Could have something to do with the post nasal drip or Trpts - I also have terrible stabbing pain at the back of my mouth (inner cheeks) and mouth sores. I am scheduled to see yet another ENT in May. I need definitive answers and I suggest you insist on the same. Try to seek out a new ENT with no ties to your prim doc, that way he/she will have no preconceived notions.

    Good luck to you,
  10. layinglow

    layinglow New Member

    Latest research has shown chronic sinus infections are most often caused by fungal overgrowth. Damp weather is certainly a boon to fungi. Olive Leaf Extract, Berberine, and RX antifungals help with this.

    The swollen glands are very typical to CFS--I have them too.

    The pain sounds like it might be from TMJ---I have a daughter and son with TMJ. You might consult with your dentist about this, and he could give you a referral.

    Best wishes,
  11. stillafreemind

    stillafreemind New Member

    I believe the same way starstella does. She gave you some great advice!

    Hope you are feeling better soon!..Sherry