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06-06-2010, 05:55 PM | #1 | |||
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06-06-2010, 06:40 PM | #2 | ||
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Hi, thanks so much for posting that information, I was confused, now I'm not!
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06-07-2010, 12:21 AM | #3 | |||
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I am going to tell my story from the beginning of my life as it changed in March of 2009 until today. That is going to take some time to get done. But for today I want to share with you what I posted on another neuro type web site for all the wonderful people who come to read your blogs. I feel everyone who is burden with this afflicted should read. God Bless You and looking forward to you and I together help others. My dear friend Tina, To all of you reading this thread, Tina is the one that came to my aid during the worst time of my life. I had posted something that said " I can't live any longer with this pain" The AD pain had taken over my entire life. The only thing I could do to get away from the pain was to sleep. Tina, sent me a PM and told me her story. Needless to say, my hopes, my prayers, my faith, my energy, my life went into 2nd gear. There is someone out there that has an answer. My neurologist mentioned that there was a procedure out there when nothing else is left to do. He wanted to try more and different meds. I knew that would not help. I was on all of them for the TN attacks and they did not help. After Tina contacted me, I went back to my neurologist to get more info about it and did he know a doc who could do it. He said yes and set up an appointment for me. While waiting for the appointment, I was on the phone daily with Tina to learn more. I was like a little kid who first found out about candy. I wanted more and more information. It just seemed to simple of a fix. It sounded like a dream that any minute would be a nightmare. I could not understand how was it that Tina and her Doctor had the secret and all these years and months no one else that heard of it. So, I ignored all the " wrong information or bad information " that I was hearing and reading. Finally the day comes to go see Dr. Miracle. He, explained like Tina, the procedure. I asked him where all this wrong information was coming from: ie: it doesn't work, you can't use it for v3, the surgery hurts and on top of it you are awake!! he set me straight. He said he would not do it if it did not work. In fact he will not put in the permanent unless I get 50% relief. It was a go for me. No questions asked except " how soon can we do it" Because it is still experimental, insurance companies are really tuff to get approved. The Doctor is your best advocate it getting it approved faster. All my medical records were sent and a letter stating that my AD was extremely severe. I was approved in 2 days. Some patients do wait a much longer time. Tina, I can't express how helpful you were to getting me where I am today. I am anxious for the two of us to work together to get help for so many people inflicted with these conditions. TN, GN, ON, AD, Neuropathic Pain, etc. There is no reason for so many people to go to dentists, ENT'S, TMJ Docs,etc. For those of you that are reading and following my post and Tina's posts, please contact us and we will get you our stories and maybe we can be of some help and some hope. Tina's blog is on NeuroTalk. You can find her under the blog name "Burntmarshmellow" You can also email me direct and I will be happy to get right back to you. If 8 years ago it helped Tina for her v3 pain.....it can help a lot more people who are on this site. We will be watching for members who are crying out in the wilderness and be there for your support and encouragement. My trial is now over. It was bitter sweet. I wanted the wires out, I wanted to wash my hair, I wanted to stop hauling around the generator box. I was excited .....but only for about 1/2 of a minute. He took them out ( no pain in taking them out ) and I said " loudly" put them back. I hurt. The pain came back right away. Now I sit and wait each day for the phone to ring to set up the surgery date. Thanks again Tina. Let's you and I work together to get the good news out. Love you Cheryl |
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"Thanks for this!" says: | Burntmarshmallow (06-07-2010), Mark56 (06-07-2010), painterchic (10-04-2010), Rrae (06-07-2010), Therese (06-03-2013), Vowel Lady (09-04-2013) |
06-07-2010, 06:36 AM | #4 | |||
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Grand Magnate
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Thank you SO much for sharing your story, Cheryl!
and BMW has been SUCH a huge help in getting this info out to those who no doubt feel they have no options left! If/when folks come here to NT looking for help and advice, I will point them to your posts! This is priceless! I will certainly be praying for a quick response from your medical team to get your permanent implant! The waiting is always the hardest part! Remind folks to be persistent with the office personnel in getting these appointments lined up. Also in checking with your insurance.... Every minute counts! People who do not suffer pain don't realize how important this is to us!! God Bless Caring Rae |
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06-07-2010, 01:01 PM | #5 | |||
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Grand Magnate
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Yea Cheryl- You worked up the courage to post with God's help and Burntmarshmallow's urging, now you are here!! Please do feel welcome in your sharing of even more for all of those among us with face pain/T.N. You can do it!!
May your permanent solution come through SOON, that is spelled N-O-W! Blessings on you for sharing as you have, ASAP [as you told me], Mark56 |
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"Thanks for this!" says: | Burntmarshmallow (06-07-2010), Rrae (06-08-2010) |
06-07-2010, 01:58 PM | #6 | |||
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Grand Magnate
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I am adding some pictures of where Cheryl trail leads were.
She had one to the upper V-1 and then one lead for V-2 and then the 3ed lead to V-3 (lower) like I have . They are out now ,the trail was very successful So together we wait Like Mark for the permanent implant date. waiting waiting Thank You for sharing and helping others the way you are Cheryl. PEACE BMW Last edited by Burntmarshmallow; 06-07-2010 at 03:34 PM. |
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06-07-2010, 09:18 PM | #7 | |||
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Grand Magnate
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I thought it might help to have a "display" pic that shows the Trigeminal nerve and its 3 branches and one that is shaded with color to show where the area is that each branch affect and where the pain would be for each branch also the shaded area would represent the area a lead would help if it were placed for a certain branch. . so we have the T.N. nerve and then it branches into 3 sections the upper =V1
mid=V2 and lower =V3 Cheryl had leads to each of the branches. I have 1 lead to my lower right (V-3) I hope this helps show/explane things better sometimes it helps to see it even tho we are all sure feeling it. Now Cheryl when your ready and feel up to it you need to share about your gamma and MVD and stuff you went threw before you had this trail . You are helping so many others by sharing and I am here for you if you need help or wanna vent. I know how much pain your in right now but sharing can help heal you . it helps me to share and you are doing great. I know others are reading this and finding ti helpful even if they dont reply ... you are helping!!! Hugs Cheryl. |
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06-08-2010, 10:01 AM | #8 | |||
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Grand Magnate
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May your permanent be scheduled soon! ASAP, Mark56 |
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"Thanks for this!" says: | Burntmarshmallow (06-08-2010), Rrae (06-08-2010) |
09-05-2011, 07:36 PM | #9 | ||
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New Member
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I'm trying to find someone to contact me directly to talk about your experience with the stimulators. I had TMJ prosthesis surgery 2 years ago and doctors have been confused if I have atypical trigeminal neuralgia or atypical trigeminal neuropathy. Is there a difference in treatment options? I've tried opioids, Cymbalta, Lyrica, Neurontin, Elavil, Methadone, radiofrequency ablations, etc. My pain is in every tooth, all gums, palate, lips, chin. I cannot "chew" anymore due to pain, wind blowing on my face triggers pain, and it's a cold burning sensation 24/7. I'm never without it unless asleep with the help of meds. Life is hardly worth living like this. I feel like such a burden to others. Can someone who has had a successful experience contact me (Burntmarshmallow and others) to tell me which doctors are good, etc? I am considering going to Mayo Clinic for a consultation. Should I go there first? I've been all over Georgia (pain mgmt, neurologist, neurosurgeons and one doc at Emory is doing research on these implanted stimulators in the neurosurgery department). I'm scared to do it. He said they'd puncture wires through my cheeks, run them behind my ears to my front bra strap areas to implant the batteries there. I'm hypersensitive to metals and a little worried this could be a problem. Who are some experienced physicians with this type of surgery? Any other comments? How do I contact Burntmarshmallow or some of the others who have had a trial or implantation? I've never used this site before and it's not as easy to write someone as it is to just post something. I hope someone can write me, then! Looking forward to hearing from you SOON! Thank you!
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"Thanks for this!" says: | Burntmarshmallow (09-06-2011), Mark56 (09-07-2011) |
01-27-2011, 10:31 AM | #10 | ||
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New Member
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I just talked to my Neurosurgeon and he is setting this up for me too. Thank you for all of the information.
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"Thanks for this!" says: | Burntmarshmallow (01-27-2011), Mark56 (02-20-2011) |
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