Guest guest Posted April 13, 2009 Report Share Posted April 13, 2009 Thanks for that information Ruth. I couldn't find it on Deanne's website. There was too much information for me to weed through. I can understand how lipreading helps Deanne given her loss, but I can also see where it can be problematic in the situations you mentioned. Bilateral Cochlear CIs December 2004 and February 2006 Deafblind/Postlingual Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Sue, This is truly an amazing, and cautionary tale. I HAVE heard of BAHA after-all-a book I was looking at had some photos of that-it (the need for a BAHA sometimes) is what got me started into looking more into the need for surgery as it all seemed so dramatic, and since I was just starting my research it really seemed outrageous that everyone who had this surgery would end up with one of those things screwed into their head. Of course, in my further research I've learned that this is rarely the case. You are special, apparently! LOL! I can see why you are grateful you had the opportunity to have the surgery and be alive to talk about it! Your wonderful body did send you warning signs and it was terrible bad luck that your GP dismissed you thusly. I certainly don't want to have my son experience any of those "warning signs"-goodness, your family must have been beside themselves with worry over you. Yeah-talking/writing is always good, and cheaper than psychotherapy-and that you've been able to help another-well, that's just a bonus. Thanks so much again Sue. All the best to you. (I sprained my ankle 3 weeks ago and have been feeling terribly immobile and frustrated-I'm an active woman-but hearing all these stories has humbled me quite a bit. I'm lucky I've never had to go through anything like this in my life and I take my good health for granted. It's really wonderful to be alive isn't it?) Denna Poulos From: Sue <suethestitcher@...>cholesteatoma Sent: Sunday, July 19, 2009 9:39:20 PMSubject: Re: to Sue Hi DennaThanks!I had hearing loss on one side but my GP just said it was due to getting older. I had also had a foul smelling discharge for a short while but it stopped and I was told not to worry about it as it had cleared up. I refuse to see that particular GP ever again.The real trouble started with a terrible earache, the worst pain I have ever experienced. I kept going to the GP and the out of hours service. The last doctor I saw at the GP's tried to get me to emergency ENT clinic at Guy's and St ' Hospital in London but they were too busy to see me because it was the start of the Easter weekend, they made an appointment for me to go a week later. However I became unconscious a few days later my son rang the GP's for advice and then phoned for an ambulance and I was taken to King's College Hospital. Lucky for me that it is one of the top places for neurosurgery, apparently I was operated on quickly but I didn't know anything about it. They sent for a consultant from Guy's and St '. She performed the mastoidectomy whilst the neurosurgeons put a further drain into my brain.Once things were settled and I saw my ENT consultant she said that the brain abscess was caused by cholesteatoma. I have been shown in subsequent CT and MRI scans where bone was eroded by the cholesteatoma and the infection entered my brain. The BAHA implant is a piece of titanium implanted into the bone. When it has all healed and the titanium has begun to band with the bone I received the second part, the sound processor, which snaps into the abutment screwed into the implant. I can then hear by bone conduction. I think there are others in this group with BAHAs. Mine certainly makes a big difference to me. I know that I am here thanks to the skill of the neurosurgeons and ENT consultant who treated me. This was four years ago, the neurosurgeons discharged me a year later but I have seen my ENT consultant many times since, I know that I will always need regular checks with ENT but they are much less frequent now. I don't mind this commitment, they saved my life.What I have learned is not to give up if you are sure that something is not right. Some doctors pass things over too quickly but we have to trust those who really know. The only safe option for cholesteatoma is surgery.Thanks for listening, I find telling my tale sometimes helps me to come to terms with what has happened to me! I hope that this helps.RegardsSue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2009 Report Share Posted July 20, 2009 Hi Sue Nice to know I am not the only one with a BAHA. Do you wear the body worn one with a cord or do you have the one the goes straight into the post? I have the body worn one and it has made such a difference. I have never been able to hear so well so many sounds I never heard before. It is quite an adjustment. I think we all have had a rough time in one way or another, its very interesting everyones posts and reading their stories. I can relate to pretty much with alot of you. But I think the most important thing to remember is we are alive and to embrace that. Hope you have a lovely day Mela Denna Poulos wrote: > > Sue, > > This is truly an amazing, and cautionary tale. I HAVE heard of BAHA > after-all-a book I was looking at had some photos of that-it (the need > for a BAHA sometimes) is what got me started into looking more into > the need for surgery as it all seemed so dramatic, and since I > was just starting my research it really seemed outrageous that > everyone who had this surgery would end up with one of those > things screwed into their head. Of course, in my further research I've > learned that this is rarely the case. You are special, apparently! > LOL! I can see why you are grateful you had the opportunity to have > the surgery and be alive to talk about it! Your wonderful body did > send you warning signs and it was terrible bad luck that your GP > dismissed you thusly. I certainly don't want to have my son experience > any of those " warning signs " -goodness, your family must have been > beside themselves with worry over you. > Yeah-talking/writing is always good, and cheaper > than psychotherapy-and that you've been able to help another-well, > that's just a bonus. Thanks so much again Sue. All the best to you. (I > sprained my ankle 3 weeks ago and have been feeling terribly immobile > and frustrated-I'm an active woman-but hearing all these stories has > humbled me quite a bit. I'm lucky I've never had to go through > anything like this in my life and I take my good health for granted. > It's really wonderful to be alive isn't it?) > > *Denna Poulos * > > ------------------------------------------------------------------------ > > > ------------------------------------------------------------------------ > *From:* Sue <suethestitcher@...> > *To:* cholesteatoma > *Sent:* Sunday, July 19, 2009 9:39:20 PM > *Subject:* Re: to Sue > > > > Hi Denna > Thanks! > I had hearing loss on one side but my GP just said it was due to > getting older. I had also had a foul smelling discharge for a short > while but it stopped and I was told not to worry about it as it had > cleared up. I refuse to see that particular GP ever again. > The real trouble started with a terrible earache, the worst pain I > have ever experienced. I kept going to the GP and the out of hours > service. The last doctor I saw at the GP's tried to get me to > emergency ENT clinic at Guy's and St ' Hospital in London but > they were too busy to see me because it was the start of the Easter > weekend, they made an appointment for me to go a week later. However I > became unconscious a few days later my son rang the GP's for advice > and then phoned for an ambulance and I was taken to King's College > Hospital. Lucky for me that it is one of the top places for > neurosurgery, apparently I was operated on quickly but I didn't know > anything about it. They sent for a consultant from Guy's and St > '. She performed the mastoidectomy whilst the neurosurgeons put > a further drain into my brain. > Once things were settled and I saw my ENT consultant she said that the > brain abscess was caused by cholesteatoma. I have been shown in > subsequent CT and MRI scans where bone was eroded by the cholesteatoma > and the infection entered my brain. > The BAHA implant is a piece of titanium implanted into the bone. When > it has all healed and the titanium has begun to band with the bone I > received the second part, the sound processor, which snaps into the > abutment screwed into the implant. I can then hear by bone conduction. > I think there are others in this group with BAHAs. Mine certainly > makes a big difference to me. > I know that I am here thanks to the skill of the neurosurgeons and ENT > consultant who treated me. This was four years ago, the neurosurgeons > discharged me a year later but I have seen my ENT consultant many > times since, I know that I will always need regular checks with ENT > but they are much less frequent now. I don't mind this commitment, > they saved my life. > What I have learned is not to give up if you are sure that something > is not right. Some doctors pass things over too quickly but we have to > trust those who really know. The only safe option for cholesteatoma is > surgery. > Thanks for listening, I find telling my tale sometimes helps me to > come to terms with what has happened to me! I hope that this helps. > Regards > Sue > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 You'll do fine. You're already giving great advice. I was just as nervous as you when I first became a moderator. Just speak from your heart and experiences. If you need any help or guidance, I'm here to help, just let me know. Thanks for your kind words. I do this because I love helping others. If my experiences can help make someone else's journey easier, I can't think of a better gift I could give them. Sue Co-Owner ________________________________ From: <radiant.salubrity@...> Stimulator Sent: Friday, September 25, 2009 8:19:35 PM Subject: Sue Thank you Sue. Let's just hope I can do as good as a job as what you do. I love talking to people, trying to help where I can. I think it's part of being in the masage profession that brings alot of it out. Hopefully I can dispense the right advice as you do so often. Warm Cheers Quote Link to comment Share on other sites More sharing options...
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