Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.

Anna Guarco Cheney
Anna Guarco Cheney
  • Female
  • Granby, CT
  • United States
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Anna Guarco Cheney's Friends

  • Holly Petersen-Barnes
  • akash
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  • Erin McKeag
  • Rick Smith
  • Lori Branco
  • Carolina
  • Ally Castellano
  • Lily's Mommy
  • Lee
  • Anne Macaloney
  • Stacy Mayer
  • James Curley
  • Jamie Talley
  • Linnette Lee

Anna Guarco Cheney's Groups

 

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TN & Parenthood

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for mothers and fathers with TN or dads/moms-to-be with TN
katew joined Anna Guarco Cheney's group Wednesday
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TN & Parenthood

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Emma and kathsmile joined Anna Guarco Cheney's group Jan 14
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TN New England

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for those with TN living in the New England area
kathsmile joined Anna Guarco Cheney's group Jan 14
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TN & Parenthood

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Kathy_Toronto joined Anna Guarco Cheney's group Jan 8
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TN & Parenthood

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DonnaTn15 joined Anna Guarco Cheney's group Jan 5
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TN New England

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for those with TN living in the New England area
bet6252@yahoo.com and RickRI joined Anna Guarco Cheney's group Dec 31, 2011
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RickRI commented on Anna Guarco Cheney's group 'TN New England'
Hi, I am new to this group. Does anyone have any experience with The Massachusetts General Hospital neurology department? I have been referred to them but do not have an appointment as of yet I am in Rhode Island and while I do have a neurologist…
Dec 31, 2011
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TN & Parenthood

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Albee and susie evans joined Anna Guarco Cheney's group Dec 21, 2011
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susie evans commented on Anna Guarco Cheney's group 'TN & Parenthood'
Hiya, I have a 10 month old son and I was diagnosed 2 1/2 years ago, I stopped all meds when I was pregnant and thankfully had no problems until he was a month old. In the last week things have got to the worst they have ever been, I'm now…
Dec 20, 2011
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TN & Parenthood

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elesea joined Anna Guarco Cheney's group Dec 19, 2011
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TN New England

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for those with TN living in the New England area
steve joined Anna Guarco Cheney's group Dec 13, 2011
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TN & Parenthood

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Lisa A. MacLeod joined Anna Guarco Cheney's group Dec 12, 2011
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TN & Parenthood

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Zen Blonde joined Anna Guarco Cheney's group Dec 2, 2011
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TN & Parenthood

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Lisa (iamrite) joined Anna Guarco Cheney's group Nov 29, 2011
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TN & Parenthood

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Jen joined Anna Guarco Cheney's group Nov 20, 2011
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TN New England

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CherylAnn joined Anna Guarco Cheney's group Nov 4, 2011

Profile Information

What treatments have you undergone (or will undergo)? With what success?
many medications, RFL surgery, possibly MVD
Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?)
My TN diagnosis was preceded by nerve death/partial paralysis, hemifacial spasmic dystonia, synkinesis, and TMJ dysfunction. The RFL surgery led to greater, constant pain following my TN diagnosis. Most medications worsened my state of health, and often left me non-functioning. Against my doctors wishes, I've taken myself off of all medications but one. In hopes of giving my step-son a sibling, I hope to take myself off the last medication in time and am looking to undergo an MVD.
Would you like to recommend a doctor, therapist or a hospital?
K. Singh Sahni, M.D.

Comment Wall (14 comments)

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At 7:31am on March 13, 2011, James CurleyJames Curley said…

Hi Anna,

   Thank you so much for your kind thoughts.  I hope that you ar doing better yourself.

James

At 9:06pm on September 4, 2010, Linnette LeeLinnette Lee said…
Hi Anna, YOu sent me a message back in May and I have been terrible about checking the TN site. But I suffer from Hemifacial spasms and you had said your face looked similar to mine. I tried the botox and it paralyzed the spasms for the last 3 months but I looked like I had a stroke but enjoyed not having the facial cramping but still was left with the TN pain and Occipital pain. The botox is wearing off now and the twitching is coming back I can even feel it spaz in my neck now, so I am a bit worried. Would love to talk with you as well... I will make sure to check the site more frequently too! Thanks Linnette Lee
At 4:51pm on June 15, 2010, Erin McKeagErin McKeag said…
Your picture looks like a handful of the ones taken of me.
At 2:23pm on May 11, 2010, Anne MacaloneyAnne Macaloney said…
Nice to meet you Anna I hope you are having a good pain free day <3
At 10:29pm on May 5, 2010, Scott OrnScott Orn said…
yoga is the best!
At 9:16pm on May 5, 2010, CarolinaCarolina said…
Hi Anna. Hope you're feeling well. I just joined. Finally a place where others can understand what this is like. How long have you been a member?
At 2:22pm on May 5, 2010, Ally CastellanoAlly Castellano said…
Thank you for answering my questions on the therapy. I was given the name of someone in NY to try. We had contacted him before my pain got really bad. I agree, when my emotions are all over..my pain is all over too! Which is frustrating. I stress myself out very easily. I try so hard not to, but it is hard. At the moment I am just so stressed about how out of control my pain is. It is just a vicious cycle. I try to keep myself distracted. I work some and that helps. I am taking one class, but it ends this week.
I never heard of cranialsacral therapy to help with autism! My dream would be to open up my own school to help children with autism. I have been reading lots of books on autism recently, but never heard of that. Thank you for sharing that with me!
Last night I did not sleep. Each time I tried my face was just like "hello ally, don't think you are going to fall asleep" UGH.
At 7:28pm on May 4, 2010, Scott OrnScott Orn said…
Btw I love yoga too. Twice a week for me.
At 4:37pm on May 4, 2010, Ally CastellanoAlly Castellano said…
As for the craniosacral therapy..is it painful? how many sessions does it take? How has it helped you? I am sorry you didn't sleep last night..last night was the first night in a LONG time that I actually slept. It has been very windy here today so I haven't been able to go out much, when I did..it was no fun! Oh gosh! YEs, the MVD's videos are very graphic..I watched them after I had mine..it doesn't bother me now..I just think its cool lol. If it is what you feel is right for you, don't let it scare you away.
At 10:36am on May 4, 2010, Ally CastellanoAlly Castellano said…
No problem! It is so frustrating to have TN we mine as well be able to talk to others who really understand! And thanks..I hope one day I wont have any pain. I wanted to ask you some about cranialsacral (spelling?) therapy. Before my pain got really bad I was looking into so I just had some questions for you!
 
 
 

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