Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 Hi Alice, Just want you to know we are thinking about you. Sounds like its been a rather rough row to hoe there lately. You are in our thoughts and we are wishing you warm hugs. Nikki and Juli > Hi Everyone, > > I know I've been somewhat silent. I get that way sometimes when I'm dealing > with something new. I guess I should fill you in on what is going on with > me. > > Most of you know I have a Cochlear Implant. This is a miracle for me and I > honestly don't think I can stand the thought of it not working to help me. > I've been told in the past that my auditory nerve may reject the sound that > the implant offers me and I go from time to time with ups and downs without > really knowing why. > > For the last couple of months, I have been dealing with pain. Some days > it's very difficult to even put the implant on because the pain goes thru my > head from the implanted ear. Every sound is excruciating. Even typing on > the computer sends waves of pain thru my head. I've been to the surgeon and > to the audiologist and we have shut down electrodes to try to reduce the > pain which we feel is from the electrical stimulation. Unfortunately, this > has not been helpful. Instead, what I can hear has been compromised. > > Last week, I went for my quartely appointment with my PCP. We talked > about this pain and she feels badly because she knows how important being > able to hear is to me. She did some testing and feels that I have TMJ. Now > ... that is the last thing my audiologist suggested and also Cochlear - > the company that made the implant I use. > > I am really wondering if it is TMJ whether the reason is due to muscle loss > in the jaw area due to the Mito. If so.. I doubt there is anything that can > be done. I have an appointment scheduled with the only TMJ specialist in > Albuquerque on September 3rd. He will evaluate me for TMJ and we will go > from there. He is out of the hospital that the MDA office is affiliated > with here so this is probably good. > > I'm sorry that I've been less than active here. It's not normal for me but > when I have this problem, other issues crop up as well. The pain weakens me > and I am less apt to be on the computer. For all of you who are dealing > with issues for yourselves or your loved ones, I just want you to know that > I'm still here for you. > > Alice > > > --- > Outgoing mail is certified Virus Free. > Checked by AVG anti-virus system (http://www.grisoft.com). > Version: 6.0.381 / Virus Database: 214 - Release Date: 08/02/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 alice Thanks for sharing the problems you are having. I knew something must be up. I am sorry to hear of your pain. I will be anxious to see what the TMJ specialist says. I have been told that I might have it as I get horrible pain and spasms in my jaw, neck and shoulder when I yawn. I think mine is aggrevated by my CPAP mask. I think I may be holding my jaw differently. I should find someone to check mine out as sometimes a mouthpiece at night is all it takes to reduce the problem. I wish you luck in solving this problem. laurie Reply-To: Date: Wed, 21 Aug 2002 17:00:12 -0600 To: Subject: Me Hi Everyone, I know I've been somewhat silent. I get that way sometimes when I'm dealing with something new. I guess I should fill you in on what is going on with me. Most of you know I have a Cochlear Implant. This is a miracle for me and I honestly don't think I can stand the thought of it not working to help me. I've been told in the past that my auditory nerve may reject the sound that the implant offers me and I go from time to time with ups and downs without really knowing why. For the last couple of months, I have been dealing with pain. Some days it's very difficult to even put the implant on because the pain goes thru my head from the implanted ear. Every sound is excruciating. Even typing on the computer sends waves of pain thru my head. I've been to the surgeon and to the audiologist and we have shut down electrodes to try to reduce the pain which we feel is from the electrical stimulation. Unfortunately, this has not been helpful. Instead, what I can hear has been compromised. Last week, I went for my quartely appointment with my PCP. We talked about this pain and she feels badly because she knows how important being able to hear is to me. She did some testing and feels that I have TMJ. Now .... that is the last thing my audiologist suggested and also Cochlear - the company that made the implant I use. I am really wondering if it is TMJ whether the reason is due to muscle loss in the jaw area due to the Mito. If so.. I doubt there is anything that can be done. I have an appointment scheduled with the only TMJ specialist in Albuquerque on September 3rd. He will evaluate me for TMJ and we will go from there. He is out of the hospital that the MDA office is affiliated with here so this is probably good. I'm sorry that I've been less than active here. It's not normal for me but when I have this problem, other issues crop up as well. The pain weakens me and I am less apt to be on the computer. For all of you who are dealing with issues for yourselves or your loved ones, I just want you to know that I'm still here for you. Alice --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 08/02/2002 Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2002 Report Share Posted August 21, 2002 Alice, I am keeping you in my thoughts and prayers. Hang in there! Hugs O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 I have wondered if the CPAP played a role in this potential of TMJ because it requres that you keep your jaw closed during the hours you are asleep. It's one of the things I'm going to ask the specialist when I see him. In all honesty, the pain is not what is getting me. I live with pain daily so pain has become a part of my life. What is bothering me the most is the fact that it is affecting my ability to use the implant and thus I'm very fearful of returning to the world of the deaf which is something I just am not prepared to do. I simply do not want to go there again. Alice ---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.381 / Virus Database: 214 - Release Date: 08/02/2002 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Alice, I am so sorry to hear that you are hurting...I hope that it gets resolved and soon! Please let us know how you are doing so that we can be there for you when you need us. Smurffy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Hi Laurie, You are right about the mouthpiece. I have had one for a long time. When my TMJ crops up, I try to remember to use it every night, and sometimes use it all day too. Other than turning me in to a lisper, you don't know I have it on. It helps to relax the jaw. Stress is a trigger of it, as we tend to tighten our jaws and teeth when under a lot of stress. I have had similar problems to the implant that Alice had, and was reimplanted 2 years ago in the opposite ear, with no more problems of that kind from the implant. At the time, TMJ was not suspect, but I did and do have TMJ in that side of the jaw where the original implant was.. I am anxious to see what Alice finds out in Sept. as it may answer some of my questions too. What she is going through is no fun at all. Alice, you know I am there for you!! Hang in there. Ruth -----Original Message-----From: Laureta Fitzgerald Sent: Wednesday, August 21, 2002 7:38 PMTo: Subject: Re: MealiceThanks for sharing the problems you are having. I knew something must be up. I am sorry to hear of your pain.I will be anxious to see what the TMJ specialist says. I have been told that I might have it as I get horrible pain and spasms in my jaw, neck and shoulder when I yawn. I think mine is aggrevated by my CPAP mask. I think I may be holding my jaw differently. I should find someone to check mine out as sometimes a mouthpiece at night is all it takes to reduce the problem. I wish you luck in solving this problem.laurie Reply-To: Date: Wed, 21 Aug 2002 17:00:12 -0600To: Subject: Me Hi Everyone,I know I've been somewhat silent. I get that way sometimes when I'm dealingwith something new. I guess I should fill you in on what is going on withme.Most of you know I have a Cochlear Implant. This is a miracle for me and Ihonestly don't think I can stand the thought of it not working to help me.I've been told in the past that my auditory nerve may reject the sound thatthe implant offers me and I go from time to time with ups and downs withoutreally knowing why.For the last couple of months, I have been dealing with pain. Some daysit's very difficult to even put the implant on because the pain goes thru myhead from the implanted ear. Every sound is excruciating. Even typing onthe computer sends waves of pain thru my head. I've been to the surgeon andto the audiologist and we have shut down electrodes to try to reduce thepain which we feel is from the electrical stimulation. Unfortunately, thishas not been helpful. Instead, what I can hear has been compromised.Last week, I went for my quartely appointment with my PCP. We talkedabout this pain and she feels badly because she knows how important beingable to hear is to me. She did some testing and feels that I have TMJ. Now... that is the last thing my audiologist suggested and also Cochlear -the company that made the implant I use.I am really wondering if it is TMJ whether the reason is due to muscle lossin the jaw area due to the Mito. If so.. I doubt there is anything that canbe done. I have an appointment scheduled with the only TMJ specialist inAlbuquerque on September 3rd. He will evaluate me for TMJ and we will gofrom there. He is out of the hospital that the MDA office is affiliatedwith here so this is probably good.I'm sorry that I've been less than active here. It's not normal for me butwhen I have this problem, other issues crop up as well. The pain weakens meand I am less apt to be on the computer. For all of you who are dealingwith issues for yourselves or your loved ones, I just want you to know thatI'm still here for you.Alice---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.381 / Virus Database: 214 - Release Date: 08/02/2002Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Dear Alice: Unbelievable about the TMJ...... Have the docs considered irritation at your trigeminal nerve? It is right in front of your ear and where the three major facial nerves meet. With my migraines I will sometimes get inflammation in my trigeminal nerve and it drops me to my knees....so I understand your pain. Would you consider icing it temporarily until you see the TMJ doc? I find some minimal help with icing the trigeminal as well as my carotids, which swell so bad that I have difficulty swallowing! Please keep us all posted! Carol Me Hi Everyone,I know I've been somewhat silent. I get that way sometimes when I'm dealingwith something new. I guess I should fill you in on what is going on withme.Most of you know I have a Cochlear Implant. This is a miracle for me and Ihonestly don't think I can stand the thought of it not working to help me.I've been told in the past that my auditory nerve may reject the sound thatthe implant offers me and I go from time to time with ups and downs withoutreally knowing why.For the last couple of months, I have been dealing with pain. Some daysit's very difficult to even put the implant on because the pain goes thru myhead from the implanted ear. Every sound is excruciating. Even typing onthe computer sends waves of pain thru my head. I've been to the surgeon andto the audiologist and we have shut down electrodes to try to reduce thepain which we feel is from the electrical stimulation. Unfortunately, thishas not been helpful. Instead, what I can hear has been compromised.Last week, I went for my quartely appointment with my PCP. We talkedabout this pain and she feels badly because she knows how important beingable to hear is to me. She did some testing and feels that I have TMJ. Now... that is the last thing my audiologist suggested and also Cochlear -the company that made the implant I use.I am really wondering if it is TMJ whether the reason is due to muscle lossin the jaw area due to the Mito. If so.. I doubt there is anything that canbe done. I have an appointment scheduled with the only TMJ specialist inAlbuquerque on September 3rd. He will evaluate me for TMJ and we will gofrom there. He is out of the hospital that the MDA office is affiliatedwith here so this is probably good.I'm sorry that I've been less than active here. It's not normal for me butwhen I have this problem, other issues crop up as well. The pain weakens meand I am less apt to be on the computer. For all of you who are dealingwith issues for yourselves or your loved ones, I just want you to know thatI'm still here for you.Alice---Outgoing mail is certified Virus Free.Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.381 / Virus Database: 214 - Release Date: 08/02/2002Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Alice I know how hard you have fought to have hearing and you use your implant and lip reading so very well. You are an inspiration to me and others. I hope you get some answers that help you to use the implant as you want to do. hugs, laurie Reply-To: Date: Thu, 22 Aug 2002 01:17:54 -0600 To: Subject: Re: Me I have wondered if the CPAP played a role in this potential of TMJ because it requres that you keep your jaw closed during the hours you are asleep. It's one of the things I'm going to ask the specialist when I see him. In all honesty, the pain is not what is getting me. I live with pain daily so pain has become a part of my life. What is bothering me the most is the fact that it is affecting my ability to use the implant and thus I'm very fearful of returning to the world of the deaf which is something I just am not prepared to do. I simply do not want to go there again. Alice --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.381 / Virus Database: 214 - Release Date: 08/02/2002 Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2002 Report Share Posted August 26, 2002 ditto, love and prayer two tou you alice eileen xoxoxo Quote Link to comment Share on other sites More sharing options...
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