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We've got m mail !!!
Thu Jan 23, 2014 07:51

My dear Meningimates,

Thank You for sharing your own experiences it can helps others more than you know to get regular MRI check ups at least every other year after 7 to 10 years post op. Believe me you are worth it! KOKO=Keep on keepin on!

Ron and Christine I was delighted to receive your posts on this new active thread. Of course I'm disappointed to hear news you both have regrowth after approximately ten years, Congratulations on your pregnancy Christine!
You both will be in my prayers to the Lord Of All for good outcomes.

Alan our list moderator wrote on the Facebook page version of our meningioma talk that he might have another retreat At Big Bear Lake, California this spring like he did 11 years ago, Jesse you and I were there. So good to hear from Elaine again too, I get to see some of our old m buddies on facebook if you enter "Meningioma Talk" in the FB search box.
GBYAY Anne

  • Im backRon McKnight, Fri Jan 17 07:52
    Well here I am again. 10 years after my Meningioma surgery with no problems I was diagnosed with another. I will be seeing the Neurosurgeon soon and more than likely getting another Surgery. I want... more
    • We've got m mail !!! — Anne Breen, Thu Jan 23 07:51
      • Great to hear from you Anne!Christine, Sat Jan 25 06:43
        It's been a long time thanks for the well wishes and yes this has always been such a great forum and support for me through my journey - I'm excited to see you're on FB now so will find you all... more
      • WOW!! Clovia in NYC, Fri Jan 24 08:16
        It's been sooooooooooo long. I'm will forever be grateful to Alan for starting this group. It helped me get through so many questions and trying times back when my Denny was recovering from his... more
        • CloviaChristine, Sat Jan 25 06:46
          Thank you Clovia and condolences on Jesse's passing. I'll be sure to keep everyone updated on the baby, I've got about 5 months to go! Best Christine
      • Annejanet, Fri Jan 24 06:16
        Anne, your mention of FB reminds me to ask - the "M Talk daily update" disappeared from my email a long time ago and then just popped back in. Had no idea what happened. Was I an isolated case or it... more
        • my M e-mail also stoppedLinda Jean, Fri Jan 24 21:46
          This is interesting as the same thing happened to me. I was receiving M e-mails and involved with the discussions and then it all stopped for a long time and now it resumed. Does anyone know why?
        • Email/fb Cindy in SLC , Fri Jan 24 21:15
          Same thing for me Elaine. I had no idea the site had migrated to fb until I read Anne's last post. I found the fb group and there are over 400 members, so maybe we're the minority. It's good to see... more
          • Same for me missing original M TalkKathleen, Tue Apr 15 03:35
            I had the same problem no one there no mail and had no idea eveyone moved to FB. I have no FB account so was lost without everyone glad some are back here no and I am getting the mail again. Kathleen
            • SiteAlison , Tue Apr 15 21:37
              I was wondering why I wasn't getting any Emails. How do I get onto the Facebook site? Thx, Alison
              • Migraine'sElaine, Sat Apr 26 08:38
                Hello my Dear Fellow Mites! In Las Vegas we have been having high winds and temps. have dip down to the low 50's which is chilly to the residence. Due to Brain Surgery in 2004 the Migraine Headaches... more
                • mifepristoneDana, Tue May 20 10:57
                  I am having weird side effects and am not sure if it is due to the mifeprex. Is anyone out there who takes Mifiprex willing to talk to me about it?
                  • mifepristonecarolyn hutto, Wed May 21 15:17
                    The only side effect I had was no more periods, which was a good thing. Where are you getting mifepristone? I haven't taken it in several years. Tumor still isn't growing. Carolyn Hutto meningioma... more
                    • mifepristoneDana, Wed May 21 16:13
                      Well I am already in menopause. I order it directly from the Feminist Majority but you have to have a doctor to order it and monitor your progress.
          • Email/fbCindy in SLC, Fri Jan 24 21:18
            Sorry- I meant Janet. (BT moment!)
      • Re: We've got m mail !!!Jesse, Thu Jan 23 21:58
        Anne, that would be so AWESOME1 I wouldLOVE to attend the Big Bear retreat!!I hope Alan makes it happen again.
    • RonChristine, Wed Jan 22 09:11
      Hi Ron, I've been back and forth on this board for over 10yrs myself and know how you feel I have had regrowth twice since my initial diagnosis in my 20s. I had one removed last year with some... more
      • Re: RonAnonymous, Wed Jan 22 14:47
        I just found out is a new one growing and it needs to be removed because it will affect my speech. I am like you because I have my faith to take me through as it did 10 years ago. It looks like this... more
        • RonChristine, Wed Jan 22 19:04
          I will say that going for yearly MRIs was my downfall after my first surgery over 10yrs ago so it was a hard lesson learned .. unfortunately now I have no choice but to wait however keeping up with... more
    • I'm backMarylou, Sat Jan 18 12:25
      Sorry to hear you have to go through this again. When you had your first meningioma what grade was it. Were you told that you could have another some day. Scares me that it could re occur after so... more
    • RonJanet, Sat Jan 18 05:58
      Did you discover it through symptoms or an MRI?
      • Re: RonRon McKnight, Mon Feb 3 08:11
        I discovered it throught problems with my speech.
      • Re: RonRon McKnight, Sat Jan 18 08:14
        A couple days ago I was talking to my other half and she said I wasn't making sense. At first I thought I knew what I was saying but then quickly realize I was saying jibberish. It lasted for about... more
        • Re: RonGisela, Sat Jan 18 08:35
          Ron, much success as you move forward .... is this a re-growth or a new growth somewhere else? Unfortunately,Drs found a re-growth a couple of years ago for which I had Cyberknife radiation since... more
          • Re: RonRon McKnight, Mon Feb 3 08:12
            A new growth somewhere else.
          • RonElaine, Sun Jan 19 17:49
            Hi Ron! Please let us know the results of you neou. visit? You are close in prayer. Think positive! Smiles, Elaine
          • Re: RonRon McKnight, Sat Jan 18 17:16
            I'm not sure if it is regrowth or a new one that grew. I will know more after my neurosurgeon appt. Wednesday.
    • Re: Im backJesse in Los Angeles, Fri Jan 17 21:29
      KOKO (Keep On Keeping On) Ron!!
    • So sorry!Debbie Parker, Fri Jan 17 21:11
      Ron, so sorry to hear this news. Thank God you have the strength to go through this again.
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