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Old 02-25-2010, 09:05 AM #1
robninja1 robninja1 is offline
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Hi Burntmarhmallow, my name's Rob and I've only just found this site and just read the message you posted back in 07 about caring for someone with TN. It made me cry so much because I suffer from Anesthesia Dolorosa and this message "hits the nail on the head".
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Old 02-25-2010, 10:46 PM #2
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Hi Rob I am sorry that you have A.D.
I also have it as do a few others here . You not alone and I am glad that you found Neurotalk's T.N.. forum. Do you know how you ended up with A.D. ???
My lower right trig nerve was snapped in auto accident but I know allot of others who are left with A.D. after failed surgeries . Either way it sure is one heck of a monster to co -habituate with . I hope you have been able to find some way to control or lower some of the monster pain.If there is anything any of us can help you with do not hesitate to post, ask, we are an amazing group of people and will help any way we can.
It is nice to meet and chat with you .

Sending low pain and positive energy to you and your family.
PEACE
BMW
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Old 02-27-2010, 11:35 PM #3
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Hello, I just started reading your posts. I need to ask a favor. In short, My tn started March 2009. I had gamma knife in june which was very successful. In July I was in an auto accident and the tn came back much worse than before. Then in the fall I started getting this burning, stabbing, numb, pulling, heavy, electric shocks to my face. What I have read, this is ad. I can't find any literature that an auto accident can cause this. I will be going to trial for the accident and I was wondering if you have any information that would be helpful for me. Thank you so much.
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Old 03-01-2010, 07:34 AM #4
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I wrote you but just seen this and need to stress that you make sure you have not run out of time each state has a statue of limitations on things . like for mal pratice here in fl I think it is 2 years but not sure , each thing has a different limitation time. so check that for your state and also make sure all your doctors are putting all this in your file documenting every thing.. your pain etc..
I will be in touch soon.
PEACE
BMW
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Old 04-01-2010, 04:29 PM #5
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Quote:
Originally Posted by Burntmarshmallow View Post
I wrote you but just seen this and need to stress that you make sure you have not run out of time each state has a statue of limitations on things . like for mal pratice here in fl I think it is 2 years but not sure , each thing has a different limitation time. so check that for your state and also make sure all your doctors are putting all this in your file documenting every thing.. your pain etc..
I will be in touch soon.
PEACE
BMW
You have obviously been so helpful to so many in this forum. I want to ask for your prayers and to thank you for writing the post about caring for a TN patient. My story is long, started with V1 TN and after no results with Gamma, I had MVD and now I have AD which affects the entire right side of my face. I also have the medtronic pain pump which uses Dilaudad and Mirocaine (Bubifocaine sp?) - this is helping heaps; I still use some oral pain meds and I no longer drive, scuba dive, which was my profession. I just take one day at a time and I find when I am alone and not talking (which I so love to do) I am best and need less medication.
Thanks for all your support. Just reading your posts means heaps to me.

God Bless you, BMW... u r a jewel!

julz in texas
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Old 04-01-2010, 04:21 PM #6
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Quote:
Originally Posted by robninja1 View Post
Hi Burntmarhmallow, my name's Rob and I've only just found this site and just read the message you posted back in 07 about caring for someone with TN. It made me cry so much because I suffer from Anesthesia Dolorosa and this message "hits the nail on the head".
Me too, I read his post and I cried, but mostly I want my husband to read it. I also have AD and I have a pain pump installed which helps me. I wrote in reply to an earlier post and told some of my story, a failed MVD... I had that surgery in 2008; in 2009 I had the pain pump installed which takes the narcotics to my spinal fluid. It helps, but I still have to take lots of other meds. thank you all.
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