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Swelling in my neck

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children
shirleymahoney
shirleymahoney
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  • #1

    Swelling in my neck

    On the right side of my neck i have swelling it is there all the time and has been there for about a year.... i do get pains shooting through the area from time to time and i can feel it from the collar bone to about an inch below the back of my ear, can someone please tell me if you get this, i was told it was from fluid retention, but when they check my lungs i'm fine they don't hear anything, but it has been a while since i have had an X-Ray of them, it is very annoying

    Shirley
    Diagnosed 2003
    Myectomy 2-23-2004
    Husband: Ken
    Son: John diagnosed 2004
    Daughter: Janet (free of HCM)

    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9
    Tags: None
  • #2
    I have no ideas on this one - sorry - what does your doctor think?

    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment

    • #3
      Lisa when i was going to Dr Gilligan that is the spot he would look at when he would push in on my stomach and he said he was checking to see how much fluid i was retaining, well i don't know how he could tell from doing that but that is why he is a doctor i guess and i'm not, but instead of it going down it has just kept climbing up my neck, hope you are having a good time in Florida

      Shirley
      Diagnosed 2003
      Myectomy 2-23-2004
      Husband: Ken
      Son: John diagnosed 2004
      Daughter: Janet (free of HCM)

      Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

      Comment

      • #4
        I am home, have been for a few days. ACC was good, some new information and some old - some new twists - I will write about them in the next newsletter.
        I must admit that these confences are not really "fun" they are hard work and I always come home sick. UFF DA!

        Lisa
        Knowledge is power ... Stay informed!
        YOU can make a difference - all you have to do is try!

        Dx age 12 current age 46 and counting!
        lost: 5 family members to HCM (SCD, Stroke, CHF)
        Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
        Therapy - ICD (implanted 97, 01, 04 and 11, medication
        Currently not obstructed
        Complications - unnecessary pacemaker and stroke (unrelated to each other)

        Comment

        • #5
          Oh man Lisa I'm so sorry you are sick, but i hope you had some fun time too, i know i can't breath in Florida my husbands sister use to live there and i would look for air conditioning to stay in, i guess the humidity just took my breath away, i have my dad here with me now he came from Oklahoma and i'm hoping to get him into see my doctors and i'm sure he will want to test him for the disease being i got this from his side of the family, i also have been sitting down with him and having him tell me the family history being he is the only one left out of a family of 9, he is 87 now and will turn 88 on August 9th, i just hope i live that long, you take care and will chat later

          Shirley
          Diagnosed 2003
          Myectomy 2-23-2004
          Husband: Ken
          Son: John diagnosed 2004
          Daughter: Janet (free of HCM)

          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

          Comment

          • #6
            Shirley,
            about the swelling and pain... have you had your ear looked at to rule out fluid and a possible sinus / ear infection. The other thing that comes to mind is the possiblity of inflamation of the paratid gland. This is a perculiar sign but my daughter who has been plaqued with fluid in her eustacian tubes and off and on ear/ sinus infections gets this swelling a good part of the time. Her pcp and other docs have commented on paratiditis. She also has had MRI's because they thought it had progressed to mastoiditis. Mass EYE and EAR in Boston was where they told us it was the paratid gland. I keep trying to get her to see and ear, nose and throat specialist , but she has no time. She gets a decrease when she gets on antibiotics and she uses a lot of soaks warm alternating with cold.

            It is worth checking it out to make sure it is not these things . The doctor is commenting perhaps on jugular vein distention ; which of course tends to show with heart failure and fluid overload. I am just not sure why it would be one side and not the other. Unless of course it is both but one is more prominent.

            Hope you get some relief.

            Pam
            Dx @ 47 with HOCM & HF:11/00
            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
            Lead failure,replaced 12/06.
            SF lead recall:07,extracted leads and new device 2012
            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
            Genetic mutation 4/09, mother(d), brother, son, gene+
            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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