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MS and Acoustic Neuroma

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    MS and Acoustic Neuroma

    I just found this forum while searching for information about Acoustic Neuroma. I was diagnosed with MS in 1989 and have lived fairly successfully with it over the years. I've had a few major attacks and several smaller ones. MS is not new to me. lol In the last year, I've moved from relapsing/remitting into secondary progress. I've started to use walking aids.

    I had a MRI as a progress check for MS in January - good news ... no new lesions ... bad news ... I have a tumor! I was diagnosed with a 1cm tumor in my left ear canal. All this time the hearing loss in my left ear, tinnitus and a feeling of pressure was assumed to be MS. I'm scheduled for surgery in 2 weeks.

    Does anyone else out there have experience with this type of tumor? Did you have surgery? or not?

    Please share your experiences with me. I'm nervous about the surgery.

    tia,
    Karen
    Karen

    #2
    When I had my first MRI to diagnose my MS, a meningioma tumor was also diagnosed. Not the same as acoustic neuroma, but it did have to be removed because it was large at diagnosis, and continued to grow larger.

    Even though I was living in Washington State, not too far from Seattle, I traveled to Mayo Clinic in Minnesota for my surgery because that was where the best neurosurgeon for me was located. Though brain surgery was "not fun" the surgery was successful, I have recovered completely and have never had any recurrence of the tumor. I wish the same for you.

    When I was going through all the confusion of making both diagnoses - MS and brain tumor - I found the website for the American Brain Tumor Association was very helpful. They have an informative book downloadable there called "About Brain Tumors: A Primer for Patients and Caregivers." I found it very helpful.

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      #3
      Thanks for the link ... I'll take time to read through that pdf.
      Karen

      Comment


        #4
        Acoustic Neuroma Association

        Karen - please visit the Acoustic Neuroma Association website (you can find the link through google or on our Facebook Page - they won't let me post the URL here). If you register on the website, we'll send you a patient packet specific to your needs. There is a wealth of information available on the website, including medical centers and physicians experienced in treating acoustic neuroma. The ANA recommends treatment from a medical team with substantial acoustic neuroma experience and this is a great place to start if you want to get a second opinion before your surgery. You will also find options for treatment, questions to ask your doctor and what to expect after treatment. Research is key in this situation and your tumor is considered relatively small. Treatment is usually determined based on the tumor's location and size as well as the patient's overall health, age and what symptoms are being experienced. Another really helpful option available on the website is the discussion forum. It is an online support group and somewhere that you can read about others' experiences and ask questions about your own. There may also be an existing support group in your area. That information is available on the website as well. I hope that all of this is helpful and we can answer any additional questions on our Facebook page or on the Forum.

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          #5
          Thanks mbaumbick for the info. I am sure this forum will help!
          Karen

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            #6
            A Follow Up ...

            On 3/28 I had laser surgery (gamma knife) on my tumor. The surgery went well, I haven't had any further hearing loss but I am having almost daily headaches. Not extremely painful ... maybe a 4 on the 1-10 pain scale.

            I won't know for at least six months until the first MRI whether the surgery was effective or not. Follow-up annual MRI's for the first 5 yrs.

            But I have been struggling greatly with fatigue and strength. My walking has gotten a little worse. I have a neuro appt tomorrow and I will ask about whether this is MS or just a back slap from the surgery or what??
            Karen

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              #7
              MS and acoustic neuroma

              I was DX with MS in 1975. When MRI technology was available Drs. observed an acoustic neuroma. I have very little trouble hearing. Multiple Docs have told me to just watch it with MRI and report any hearing problems. They have all been positive (including ear doctors) that the two conditions have no correlation.

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