Meneires foll call
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Meneires foll call

› Forums › General Melanoma Community › Meneires foll call

  • Post
    • March 21, 2019 at 11:01 pm
    DZnDef
    Participant

      Hi all,

      In an unrelated thread, I learned that at least three of us have Meneires in addition to melanoma.  So I thought I’d take a very un scientific poll and see if there are others.  Meneires is pretty rare so it might warrant some looking in to by the scientific community if a statistically significant number of  people with Meneires also have melanoma.  Maybe we have biological similarities that might point towards a particular treatment.  Who knows.

      I’ve had bilateral Menieres for 23 years (starting age thirty).

      I’ve had Stage IV melanoma for six and a half years.

      Please chime in if you’ve been diagnosed with both diseases.

      Cheers!

      Maggie

    Viewing 4 reply threads
    • Replies
        • March 21, 2019 at 11:11 pm
        DZnDef
        Participant

          Drat!  Stupid typo in the subject line!  I attempted a new post with corrected subject line but was informed I could not start a new topic within ten minutes of starting another topic (some anti spam measure).  Hopefully, the word “Meneires” (missing the various accents) will attract the attentionn of those that have it enough to read the post even if they don’t know what a “foll call” is.

          • March 22, 2019 at 1:48 pm
          melanomamafia
          Participant

            Hi Maggie!

            I was diagnosed with Meniere's in march 2016. Had surgery in January 2017 to help control vertigo. Am stable as of right now with that.

            Diagnosed with melanoma August 2018. Stage 1 right now. Am having another possible primary removed on Monday, hoping pathology is negative. 

             

            Interested to see who else has these 'M' diseases!

            • March 22, 2019 at 5:35 pm
            sister of patient
            Participant

              Hi Maggie – My "aha" moment in the other thread came specifically when you mentioned your drop attacks. Leisa's had 5 of them (that I'm aware of – she doesn't always tell me) over the course of 1.5 years with the last one about 9 or 10 months ago. All things related to blood flow constriction, spinal cord compression (she has a partial T5 inward collapse), her bone health in general and, of course brain mets, were ruled out as a cause. But I don't think anyone thought about the workings of the inner ear as it relates to balance. Not long after the drop attacks started, she did find out that one eardrum was retracted and the other side was "blown out" (their layman's words for it to us – we thought it meant "stretched" somehow – she had had a lot of fluid/edema from her brain mets and then the WBR swelling).

              I can't help but think this could possibly cause Meniere's-like problems .. at the very least, I know it wasn't pursued as a possible cause of her falls. Not only are these attacks really worrying – they've done alot of damage (cracked cheekbone, torn muscles, torn meniscus, bruises that took a year to heal (because of long-term steroids)).

              So, don't know if she belongs on your roll-call but the "side-note" in the other thread was really valuable info to me!! Like I said, I learn something new here nearly every time I come!!! 🙂

              Take care.

              Barb 

              • March 27, 2019 at 5:41 pm
              Julie in SoCal
              Participant

                Hey Maggie,

                I'm just now seeing this.  Love the M Roll Call.

                YesI'm definately an overachiever!  I've had Menieres since I was in my 20's and bilateral since 2013.  I am mostly deaf and I wear hearing aids to hear. Nothing for the tinitus.

                I've also had stage 3 melanoma since 2008 and stage 3 non-small cell lung cancer since 2017.

                Peace!

                Julie

                 

                • March 30, 2019 at 12:28 am
                DZnDef
                Participant

                  Thanks for responding, everyone.  Looks like no new voices chimed in so maybe we’re just an odd bunch.  I forgot to mention it to Rock Star Doc and his Rock Star NP.  Maybe next time.  Meanwhile, the world keeps turning (or is it spinning?)

                  Cheers!

                  Maggie

              Viewing 4 reply threads
              • You must be logged in to reply to this topic.
              About the MRF Patient Forum

              The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

              The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.