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02-25-2010, 09:05 AM | #11 | ||
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New Member
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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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"Thanks for this!" says: | Burntmarshmallow (02-25-2010) |
02-25-2010, 10:46 PM | #12 | |||
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Grand Magnate
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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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02-27-2010, 11:35 PM | #13 | |||
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Junior Member
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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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03-01-2010, 07:34 AM | #14 | |||
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Grand Magnate
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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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03-02-2010, 09:52 AM | #15 | ||
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New Member
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My pain started after a supposedly routine operation. I was supposed to have a cyst/polyp removed from behind my left cheek. I was assulted after work in 2005 while trying to stop a man from attacking my pregnant friend. The man had just broken into her car and stolen the her stereo. We saw him get out of her and myself and a work mate called Dan stupidly ran after him. We cornered him and he said he would give back the stereo so he took us to when he had hidden it. It was in a bush near the car. Vicky, my pregnant friend who owned car, was on her phone to the police and when he noticed this he flipped. I had worked in the pub trade for 5 years and had seen people flip before but this was different. He went for Vicky and I grabbed him and threw him against a wall. He started swinging for me and I blocked a few (what I thought were punches) but 2 got through. Dan grabbed him in a head lock but suddenly went down. The man had stabbed him in the chin with a screwdriver. I went to restrain him with an arm lock but he twisted out and punched me in the face and ran off, I tried to run after him but my balance was shot after the punch so he got away.
I had my left cheek broken but what I thought were punches weren't. He had the screwdriver in his hand and he had stabbed me twice in the face. One didn't penetrate the skin much but started next to my nose and went up between my eyes and finished in the middle of my forehead. The other went in just above my left eye only just missed the eye. I lost the feeling of touch in the left side of my face and lost a bit of vision but I just thought how lucky I was to still have my sight!! I carried on with life and changed my career from bar management to gardening (plants don't argue back quite as much!!!) and really enjoyed my new career. I was so lucky because firstly Vicky had a beautiful baby boy and no one was that seriously injured. My face was numb but I had no pain, it was the total opposite, it felt like I had just been to the dentist and had an injection just permantly!! I was being seen by specialists at my local hospital and they had seen on a CT scan that a cyst had built up behind my cheek and told me that it needed to be removed. I had just started a new job but the surgeons insisted that it was a routine operation and that they had done thousands of these before with no problems and I would be back to work in 3-5 days. So I had the operation. I went home after the operation and felt fine, I was on cloud 9 because of the general anesthetic still in my system!! When the drugs wore off I noticed that I had a dull aching pain and shooting pains when I bent down or stretched. I went back to work after 5 days but something wasn't right. I went to see my gp and he said that it was probably just the healing process and the pain will go away. That unfortunatly never happened. I went back to see the surgeon and I was told that during the operation they couldn't find the cyst but he had removed some inflammed tissue??? I found out later that this was probably the ends of my nerves!! Nice one!! I have been on many combinations of medication but the only one that took my pain away was a nasel spray containing ketamine. The only down side was that the side effects were horrific!! I couldn't remember anything, was totally spaced out, couldn't drive and basically had no quality of life so I had to stop that. I've had a nerve block attempted but this was unsuccessful. No one wants to try and remove the nerve because they're scared that they might cause even worse pain or do damage to something else. I'm currently still on loads of medication and I'm waiting to go and see a neurosurgeon and talk about possible deep brain stimulation. I'm really scared because surgery is partly to blame for my pain so I don't really want anymore, but on the flip side, it might help stop/reduce this awful pain?? |
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03-02-2010, 04:20 PM | #16 | |||
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Grand Magnate
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ouch ouch ouch I am so sorry you have been threw that! So sorry people are uncaring and down right nasty violent to others. I can not get into doctors removing things they shouldnt have...If i say what i feel I will get banned but w.t.h.
I am really curious if you are able to at least try a neuo stim a.k.a. p.e.n.s BEFORE they set you towards the deep brain stim??????? I too can not have any type of surgery and no doc or neuro wants much to do with me as any "work" they try would just make things worse. But I am Blessed and thankful for my neuro stim implant. I know of other who do have the deep brain stim and can connect you if you would like when the times comes. It is A Big surgery and I pray to any and all Gods that you have a great neuro and staff when it is done. I am gonna message you so check your box. Have you in my prayers. PEACE BMW |
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03-11-2010, 04:57 PM | #17 | ||
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New Member
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Hi BMW, How are you keeping?
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"Thanks for this!" says: | Burntmarshmallow (03-11-2010) |
04-01-2010, 04:12 PM | #18 | ||
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Junior Member
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Quote:
Last edited by findingjulz; 04-01-2010 at 04:14 PM. Reason: The pain pump |
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"Thanks for this!" says: | Burntmarshmallow (04-01-2010), loretta (12-23-2010) |
04-01-2010, 04:21 PM | #19 | ||
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Junior Member
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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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"Thanks for this!" says: | Burntmarshmallow (04-01-2010) |
04-01-2010, 04:29 PM | #20 | ||
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Junior Member
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Quote:
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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"Thanks for this!" says: | Burntmarshmallow (04-01-2010), loretta (12-23-2010) |
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