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Old 07-22-2015, 10:04 PM #51
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Ella . Yes 🙌 I get so happy eveytime you stop by and up date. Thanks for sharing .Congratulations on book and for t.n. taking a back seat. Ten Years deserves happy dance . Let's make that forevermore ! also your a really great pal for letting me send people your way and offering support .it's been years you have never said no. May all the good you have shared be returned back into your life . Positive blessing and PEACE BMW...Tina
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Old 07-24-2015, 09:56 AM #52
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That is such wonderful news - for you and for the rest of us! Thank you so much for the updates and congraduations on the book!!

I will be coming up on a 6-year anniversary of my MVD in the fall. I sure hope that was all I will ever need.

I think I was already into menopause when TN hit me maybe 21 years ago, so that doesn't seem to be a factor for me.
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Burntmarshmallow (07-30-2015)
Old 09-09-2015, 12:56 PM #53
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Crazy Scared for MVD surgery next Fri

I am new here and so afraid of this surgery. I have had surgeries bfore but its not that I am afraid of. The fear that it will not work or will b worse is what is so frightening. I am reluctant for several reasons. First my family dr didn't even know what it was. (I have since changed Drs but didn't like him either) Then a neurologist who really did nothing but send me to this neurosurgeon. He is the only one who does MVD surgery so I really had no choice. All the meds I have taken have terrible side affects. That is if I can get these Drs to get back to me. I needed a refill on Tegretol and it has taken almost 3 wks to get her to call a refill in. The neurosurgeon said I AM NOT GOD. I was so taken aback I couldn't say much. He left after about 3 min w me. Just by him making a statement like that makes me think he does think he is god. I would love to get another surgeon but there are no more in my area and sure can't afford to b chasing one all over the U.S. I can't get any of them to gv me pain meds or anything to help me sleep. What is it w Drs? They just keep sending me to another Dr and none will get back to you or try differnet meds. I am so frustrated I really have just given up. I will try this surgery cause I feel I have no other choice or any other Drs to try. I am fed up with all of them and can only hope this surgeon is a bttr surgeon than he is a people person. I hve tried checking him out but the medical board will not gv info on any failed operations or suits against any Dr. I just don't get it. Any suggestions? I really am afraid of this plus my daughter can only tk off from work 3 days. I have NO ONE else to help me. NO ONE>no family or anything. So I will b on my own. I hv had 2 back surgeries and my surgeon was wonderful. He was standing next to me when I woke up. He was great and this Dr sure could take some lessons on bedside manner. I am at my wits end. Thanks so much for reading my story. HELP
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Old 09-09-2015, 05:11 PM #54
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hello Moose i am glad you found us here at Neurotalk but sorry for the pain that has brought you here. I have never had that surgery but It has helped many others. . . this is from Ella's last post a few weeks ago back one page on this thread .."I am always happy to talk. ellacjn@hotmail.com" Ella has always helped and will be happy to talk and share with you so please do not hesitate to email her. also remember just because you have read others have had less then perfect out come DOSE NOT mean that you will. The fact is when someone gets "loose" from the bad pain they dont stick around or look back most times. so of course you will hear /read more of the not so perfect outcomes. We all react to meds and surgeries as differently as our face pain is. Is there no pain managment doctor near that you could see along with your neuro doc??? Please DO NOT DO ANYTHING THAT YOU DO NOT FEEL COMFORTABLE WITH!!!! Do not do a surgery because you feel pressured or pushed into it! Please never do that! you doctor SHOULD make you comfortable and explain the pros and cons and what you should expect they should also share their success rate if not I will try and google how to get it and then get back to you. knowledge is power and the more you know the better informed of a decision you can make. we are here for you your not alone . we are here if you need info, help,support or just need to chat with someone who can relate. also do email Ella when you have the time. sending calm vibes and low pain to you. It is nice to meet you Moose b.t.w. sorry it is over face pain . we are all in this together Edit to say NEVER GIVE UP! NEVER SURRENDER! There is HOPE!!
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BMW
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Old 04-28-2024, 08:56 AM #55
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Thank you!!!!! You are giving me hope! I had surgery on March 26, 2024 after almost 7 years of agony! I am still experiencing the pain, but I read your messages and I feel like this is going to end.
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Old 05-16-2024, 12:18 PM #56
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Exclamation Post MVD pain

I had MVD on March 26, 2024.
My pain is not going away. On the contrary. It keeps getting worse!
I followed all your my neurosurgeon's instructions and I took the muscle relaxer with an anti-inflammatory.
I also kept taking 450 mg of oxcarbazepine 3 times a day as usual.
Nothing is working! I cannot speak or eat (except liquids).
I need a medication that can stop this pain,
It has been almost 2 months from the MVD and I would expect for the pain to diminish instead is increasing.
Any suggestions?
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Old 05-16-2024, 12:24 PM #57
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Unhappy Update: please, help

Quote:
Originally Posted by VanSan1955 View Post
Thank you!!!!! You are giving me hope! I had surgery on March 26, 2024 after almost 7 years of agony! I am still experiencing the pain, but I read your messages and I feel like this is going to end.
It has been almost 2 months from my surgery: my pain not only is not diminishing, but increasing!
My neurosurgeon even added Tizanidine and Naproxen to my 450mg. of oxcarbazepine 3 times a day, but nothing seems to help!
Any suggestions?
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