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  • Lisa and the HCMA are the BEST!

    [Lisa and the HCMA are the BEST!]

    Author: Cynthia Waldman (---.dsl.lsan03.pacbell.net)

    Date: 01-08-03 10:59

    I just wanted to make one comment here on the old board before the new one goes up, just so everyone might appreciate what a great service Lisa and the HCMA provides to us here.

    You all may have read my posting below about my brain tumor follow up conflicting with my HCM treatment.

    I decided that since Lisa was so helpful and knows so much about HCM, that I would call the Acoustic Neuroma Association (ANA) which I also belong to and see if they had any knowledge about other tests that can be used to follow Acoustic Neuromas (my type of tumor). I somehow thought that this person (who runs this organization full time) would have some useful info. for me since Lisa knows so much about HCM.

    WRONG! She didn't even get that pacemakers and MRIs are incompatible. She went on and on about how great the MRI is, not understanding the nature of my problem. She also knew nothing about what other tests are capable of. She told me to ask my Dr. Well, DUH!!!! I obviously am not going to and cannot follow my brain tumor by myself. I was just trying to educate myself about my options.

    OK, thanks for letting me vent. I feel better now.

    This service, this website, and this message board are great, and are getting even better. Thank you Lisa for all of your hard work.

    Cynthia

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lisa and the HCMA are the BEST!]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 01-08-03 11:16

    Your welcome...wow I was feeling like I should have had more answers for you...I feel better now

    all the best,

    Lisa

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lisa and the HCMA are the BEST!]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-08-03 11:29

    Dear Cynthia,

    Oddly enough, I had an MRI to rule out an acoustic neuroma earlier last year. I was clear --thank god. But how many people can even pronounce "acoustic neuroma"?

    Did you have any symptoms besides tinitius? Just curious.

    S

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lisa and the HCMA are the BEST!]

    Author: Cynthia Waldman (---.dsl.lsan03.pacbell.net)

    Date: 01-08-03 11:52

    Sarah,

    I am cutting and pasting my story from right after my surgery so you can read the recovery story. Basically the symptoms I had during and my pregnancy were facial numbness and vertigo which soon thereafter turned into unilateral hearing loss, tinnitus, and horrible, horrible headaches.

    Below is more info.

    I gave birth to my son Jesse on 11/12/01. In January, I

    >flew to New Orleans to visit with my family and introduce the baby to my

    >father who was unable to come out to CA when the baby was born (due to his HCM, etc. Drs. don't want him to fly due to lack of oxygen, heart failure, etc.).

    >

    >Before going to New Orleans I had experienced what I thought was a sinus

    >infection which interfered with my hearing. While in New Orleans, I

    >expererienced excruciating headaches, so when I returned to Los Angeles, I

    >wound up in the emergency room with what turned out to be a benign brain

    >tumor known as an acoustic neuroma. I spent close to a month in

    >Cedars-Sinai Hospital in L.A. and had 2 operations -- one to insert a shunt

    >to relieve the hydrocephalus (or water on the brain) which was causing the

    >headaches, and another 7 hour operation a week later to remove the tumor.

    >The tumor was fully removed and the prognosis is excellent, although I have

    >lost all of the hearing in my right ear. My balance is now only slightly impaired as the tumor was on the vestibular nerve which regulates balance. You have 2 of them, and one learns to compensate for the other.

    The operation was performed

    >by a world famous brain surgeon named Keith Black. Had I not had the

    >surgery, they tell me that I would have probably died within a couple of

    >years.

    Update to now, 11 mos. later, and I feel fine. Balance is a little dicey sometimes, and unilateral hearing is sometimes problematic, but all in all, am doing fine from this.

    Have your hearing problems resolved?

    And, by the way, why do these things happen to young women? It seems unfair, doesn't it?

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: Lisa and the HCMA are the BEST!]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-08-03 12:36

    C

    I started to write a response to your question about young women and it was too dark and bitter to release. Ouch.Nutshell: world going to heck in a hand basket and we do too much with too little. Need to work on my world view. : )

    The tinitius (left ear) has dropped off substantialy, but I still get the odd buzz/ring/tone now and then. I've also lost the top end of hearing range for whatever reason.

    I'll probably get another MRI in a couple years assuming nothing changes.

    S
    NOTE: This is a post from the previous forum message board.

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