Guest guest Posted January 23, 2009 Report Share Posted January 23, 2009 , My son sees Dr. Antonelli at Shands at the University of Florida. It is a research and teaching hospital and he is always keeping my son up to date as to latest developments. He told him about the "adjustable" TORP that is being tested and said it should be available soon. Hope this helps, Audrey My Story > > > > > > > > > > > > > > > > > > > > > > > > > > Childhood: I had tubes in and out of my ears and my adnoids removed. > > Counted up a total of 17 surgeries before the age of 10. I learned > > the "hold nose and blow" method, which started with my mom putting a > > tube in my nose and blowing to depressurize my ears. So glad I > > learned to so it myself because the tube was just agonizing > > experience. > > > > circa sometime in 2004: 20 years free of ear problems. No pressure > > problems, etc. I moved into a house with gas heat with a dog and two > > cats. I started to come down with a cold and saw an ad many times for > > the drug Zicam which is still on the market today and decided to give > > it a try. They have nasal swabs now, but at the time it was a spray > > to be applied in the mouth. I'm not pointing blame at any one thing, > > but believe it could be any combination of environmental variables > > that caused what came next. When I sprayed the Zicam into my mouth, I > > felt what seemed like a sharpened pencil being jammed through my > > eardrum. It was the worst pain I have felt in my life. It was almost > > immediately after spraying. This happened twice and I discontinued > > use of the spray. Allergies maybe? Zinc overdose? who knows. I've > > told my theory that Zicam had something to do with my future problems > > and docs shoot it down every time. All I know is that from the time I > > used Zicam and when I was diagnosed with a c-toma that my ear > > remained constantly clogged and I had to depressurize often. > > > > Aug 06: Diagnosed with a cholesteatoma in my right ear. Received a > > tympanomastoidectomy which replaced my eardrum and removed c-toma, > > incus and malleus and severed my chorda tympani nerve in that ear > > (taste nerve). Scheduled to re-explore in a year to make sure all was > > removed and perform ossicular reconstruction. Of course, I had > > regular check-ups throughout the year. Just a sidenote that this was > > my last semester of college. Boy was that an experience. Graduated > > with honors still. It was a "If I can make it through that, I can > > make it through anything" kind of experience for sure. > > > > Aug 07: I had a titanium implant installed. A PORP to be exact. This > > created a bridge between my ear drum and the last remaining bone, the > > Stapes. > > > > Nov 07: We realized my left eardrum had collapsed and were laying > > like saran wrap on the ear bones. To prevent another choleaseatoma > > and destruction of the bones in my once "good" ear, we acted quickly > > and performed a tympanoplasty with cartilage reinforcement. This > > surgery again severed my remaining chorda tympani nerve, supossedly > > rendering my taste to nothing. The bones were luckily saved and > > unharmed. At this time, we installed a PET (tube) in my right ear > > because it seemed clogged and was not conducting sound as it should. > > Somehow, I can still taste. I'm pretty sure my brain is not playing > > tricks on me because I can still taste. Not sure why or how, but I > > can. > > > > I got a cold right after surgery. Left ear completely clogged and > > right ear not working as I had hoped with a PET in it. I had the > > worst hearing I have had in my life. I became so scared of hearing > > loss that my partner and I started sign language lessons to ensure we > > could communicate. I've never feared anything worse than being unable > > to communicate. > > > > April 08: We saw from the outside that the implant was protruding > > uncomfortably through the eardrum. We decided that we needed to put > > cartilage reinforement on the ear drum, and this would give him a > > chance to look into why the implant was not performing as we had > > hoped. During the surgery, he installed the cartilage and found that > > the implant had actually broken my stapes and was embedded in the > > flesh beside the inner ear linkage. The current implant was useless > > because it was not long enough. We would need to be re-fitted with a > > TORP in the future if I indeed choose to do so. I luckily had a PET > > installed in the left ear which cleared the ear and finally, after 5 > > months, had one good ear. > > > > A few days after this last surgery I developed vertigo and spent a > > week immobilized in the hospital. I was quite surprised it took this > > many surgeries to actually develop a side-effect. It was the worst > > week of my life. I couldn't keep my eyes focused on anything. > > Couldn't walk straight and was the first time in my life that I > > looked in the mirror and actually looked green. I became well known > > for the guy that came into the doctor's office, and later to the > > hospital with my silver bathroom trashcan clutched in my arms. If I > > ever had to pick a personal hell, this experience would be it. > > > > Sept 08: Got another cold and my left ear PET fell out. CLOGGED. > > Replaced the PET. > > > > Today: My PET fell out about 2 weeks ago. I just woke up this morning > > with the feeling of fluid in my ear. Everyone knows the feeling. I > > lean my head back to take a drink and my hearing fades a bit. I've > > just moved to a new city and have been at my new job for about 3 > > months now. I have an appointment for a new ENT a week from today, > > but what I'm most fearful of is the hearing loss this will develop > > before a new PET is installed. Having one ear is tough and I need > > some advice. > > > > I'm trying to decide what I want to do with my right ear. I've looked > > into TORPS which have a lower success rate than PORPS because of the > > lack of stapes. Already having no luck with the first makes me > > hesitant to the alternative. If I don't have another implant > > installed, I will feel it has all been for nothing, but on the other > > hand I'm scared of having that ear cut on for a 4th time with the new > > risk of vertigo. I've looked into BAHAs which I feel would be a great > > outcome, but don't know if I can endure the procedures to have a plug > > in the side of my head. I'm feeling desperate at this point. I can't > > keep relying solely on just one ear. All I feel I can do at this > > point is throw my hands up in the air. > > > > I would love to hear from others who may have similar experiences. > > Thanks for letting me tell my story. I won't give up hope, but > > frustration is overpowering at times. > A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Audrey, Please keep us all updated on this new technology. I live in Fort. Lauderdale, Fl. My Story>>>>>>>>>>>>>>>>>>>>>>>>>> Childhood: I had tubes in and out of my ears and my adnoids removed.>> Counted up a total of 17 surgeries before the age of 10. I learned>> the "hold nose and blow" method, which started with my mom putting a>> tube in my nose and blowing to depressurize my ears. So glad I>> learned to so it myself because the tube was just agonizing>> experience.>>>> circa sometime in 2004: 20 years free of ear problems. No pressure>> problems, etc. I moved into a house with gas heat with a dog and two>> cats. I started to come down with a cold and saw an ad many times for>> the drug Zicam which is still on the market today and decided to give>> it a try. They have nasal swabs now, but at the time it was a spray>> to be applied in the mouth. I'm not pointing blame at any one thing,>> but believe it could be any combination of environmental variables>> that caused what came next. When I sprayed the Zicam into my mouth, I>> felt what seemed like a sharpened pencil being jammed through my>> eardrum. It was the worst pain I have felt in my life. It was almost>> immediately after spraying. This happened twice and I discontinued>> use of the spray. Allergies maybe? Zinc overdose? who knows. I've>> told my theory that Zicam had something to do with my future problems>> and docs shoot it down every time. All I know is that from the time I>> used Zicam and when I was diagnosed with a c-toma that my ear>> remained constantly clogged and I had to depressurize often.>>>> Aug 06: Diagnosed with a cholesteatoma in my right ear. Received a>> tympanomastoidectomy which replaced my eardrum and removed c-toma,>> incus and malleus and severed my chorda tympani nerve in that ear>> (taste nerve). Scheduled to re-explore in a year to make sure all was>> removed and perform ossicular reconstruction. Of course, I had>> regular check-ups throughout the year. Just a sidenote that this was>> my last semester of college. Boy was that an experience. Graduated>> with honors still. It was a "If I can make it through that, I can>> make it through anything" kind of experience for sure.>>>> Aug 07: I had a titanium implant installed. A PORP to be exact. This>> created a bridge between my ear drum and the last remaining bone, the>> Stapes.>>>> Nov 07: We realized my left eardrum had collapsed and were laying>> like saran wrap on the ear bones. To prevent another choleaseatoma>> and destruction of the bones in my once "good" ear, we acted quickly>> and performed a tympanoplasty with cartilage reinforcement. This>> surgery again severed my remaining chorda tympani nerve, supossedly>> rendering my taste to nothing. The bones were luckily saved and>> unharmed. At this time, we installed a PET (tube) in my right ear>> because it seemed clogged and was not conducting sound as it should.>> Somehow, I can still taste. I'm pretty sure my brain is not playing>> tricks on me because I can still taste. Not sure why or how, but I>> can.>>>> I got a cold right after surgery. Left ear completely clogged and>> right ear not working as I had hoped with a PET in it. I had the>> worst hearing I have had in my life. I became so scared of hearing>> loss that my partner and I started sign language lessons to ensure we>> could communicate. I've never feared anything worse than being unable>> to communicate.>>>> April 08: We saw from the outside that the implant was protruding>> uncomfortably through the eardrum. We decided that we needed to put>> cartilage reinforement on the ear drum, and this would give him a>> chance to look into why the implant was not performing as we had>> hoped. During the surgery, he installed the cartilage and found that>> the implant had actually broken my stapes and was embedded in the>> flesh beside the inner ear linkage. The current implant was useless>> because it was not long enough. We would need to be re-fitted with a>> TORP in the future if I indeed choose to do so. I luckily had a PET>> installed in the left ear which cleared the ear and finally, after 5>> months, had one good ear.>>>> A few days after this last surgery I developed vertigo and spent a>> week immobilized in the hospital. I was quite surprised it took this>> many surgeries to actually develop a side-effect. It was the worst>> week of my life. I couldn't keep my eyes focused on anything.>> Couldn't walk straight and was the first time in my life that I>> looked in the mirror and actually looked green. I became well known>> for the guy that came into the doctor's office, and later to the>> hospital with my silver bathroom trashcan clutched in my arms. If I>> ever had to pick a personal hell, this experience would be it.>>>> Sept 08: Got another cold and my left ear PET fell out. CLOGGED.>> Replaced the PET.>>>> Today: My PET fell out about 2 weeks ago. I just woke up this morning>> with the feeling of fluid in my ear. Everyone knows the feeling. I>> lean my head back to take a drink and my hearing fades a bit. I've>> just moved to a new city and have been at my new job for about 3>> months now. I have an appointment for a new ENT a week from today,>> but what I'm most fearful of is the hearing loss this will develop>> before a new PET is installed. Having one ear is tough and I need>> some advice.>>>> I'm trying to decide what I want to do with my right ear. I've looked>> into TORPS which have a lower success rate than PORPS because of the>> lack of stapes. Already having no luck with the first makes me>> hesitant to the alternative. If I don't have another implant>> installed, I will feel it has all been for nothing, but on the other>> hand I'm scared of having that ear cut on for a 4th time with the new>> risk of vertigo. I've looked into BAHAs which I feel would be a great>> outcome, but don't know if I can endure the procedures to have a plug>> in the side of my head. I'm feeling desperate at this point. I can't>> keep relying solely on just one ear. All I feel I can do at this>> point is throw my hands up in the air.>>>> I would love to hear from others who may have similar experiences.>> Thanks for letting me tell my story. I won't give up hope, but>> frustration is overpowering at times.> A Good Credit Score is 700 or Above. See yours in just 2 easy steps! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2009 Report Share Posted January 24, 2009 Thanks for the information Audrey. I've searched a bit and can't seem to find any info on an adjustable TORP, but I'll keep an eye out. At this point I'll probably just get a tube in my left again and hold off on my right until a better solution comes along. It seems like there should be a better way to construct TORPS than just sticking it in and hoping it stays in place. > > > > > > > > > Hello , > > > I am sorry to hear that you have had such bad experiences. As far as > > the TORP goes, my son's otologist has told him that there are some new > > developments in the immediate future whereby a TORP can be adjusted > > after it is implanted at a later date. My son, having had 3 that all > > worked for only short periods of time is looking forward to this coming > > on the market. > > > > > > > > > I wish you the best in the future. > > > Audrey > > > > > > > > > > > > > > > My Story > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Childhood: I had tubes in and out of my ears and my adnoids removed. > > > > > > Counted up a total of 17 surgeries before the age of 10. I learned > > > > > > the " hold nose and blow " method, which started with my mom putting a > > > > > > tube in my nose and blowing to depressurize my ears. So glad I > > > > > > learned to so it myself because the tube was just agonizing > > > > > > experience. > > > > > > > > > > > > circa sometime in 2004: 20 years free of ear problems. No pressure > > > > > > problems, etc. I moved into a house with gas heat with a dog and two > > > > > > cats. I started to come down with a cold and saw an ad many times for > > > > > > the drug Zicam which is still on the market today and decided to give > > > > > > it a try. They have nasal swabs now, but at the time it was a spray > > > > > > to be applied in the mouth. I'm not pointing blame at any one thing, > > > > > > but believe it could be any combination of environmental variables > > > > > > that caused what came next. When I sprayed the Zicam into my mouth, I > > > > > > felt what seemed like a sharpened pencil being jammed through my > > > > > > eardrum. It was the worst pain I have felt in my life. It was almost > > > > > > immediately after spraying. This happened twice and I discontinued > > > > > > use of the spray. Allergies maybe? Zinc overdose? who knows. I've > > > > > > told my theory that Zicam had something to do with my future problems > > > > > > and docs shoot it down every time. All I know is that from the time I > > > > > > used Zicam and when I was diagnosed with a c-toma that my ear > > > > > > remained constantly clogged and I had to depressurize often. > > > > > > > > > > > > Aug 06: Diagnosed with a cholesteatoma in my right ear. Received a > > > > > > tympanomastoidectomy which replaced my eardrum and removed c-toma, > > > > > > incus and malleus and severed my chorda tympani nerve in that ear > > > > > > (taste nerve). Scheduled to re-explore in a year to make sure all was > > > > > > removed and perform ossicular reconstruction. Of course, I had > > > > > > regular check-ups throughout the year. Just a sidenote that this was > > > > > > my last semester of college. Boy was that an experience. Graduated > > > > > > with honors still. It was a " If I can make it through that, I can > > > > > > make it through anything " kind of experience for sure. > > > > > > > > > > > > Aug 07: I had a titanium implant installed. A PORP to be exact. This > > > > > > created a bridge between my ear drum and the last remaining bone, the > > > > > > Stapes. > > > > > > > > > > > > Nov 07: We realized my left eardrum had collapsed and were laying > > > > > > like saran wrap on the ear bones. To prevent another choleaseatoma > > > > > > and destruction of the bones in my once " good " ear, we acted quickly > > > > > > and performed a tympanoplasty with cartilage reinforcement. This > > > > > > surgery again severed my remaining chorda tympani nerve, supossedly > > > > > > rendering my taste to nothing. The bones were luckily saved and > > > > > > unharmed. At this time, we installed a PET (tube) in my right ear > > > > > > because it seemed clogged and was not conducting sound as it should. > > > > > > Somehow, I can still taste. I'm pretty sure my brain is not playing > > > > > > tricks on me because I can still taste. Not sure why or how, but I > > > > > > can. > > > > > > > > > > > > I got a cold right after surgery. Left ear completely clogged and > > > > > > right ear not working as I had hoped with a PET in it. I had the > > > > > > worst hearing I have had in my life. I became so scared of hearing > > > > > > loss that my partner and I started sign language lessons to ensure we > > > > > > could communicate. I've never feared anything worse than being unable > > > > > > to communicate. > > > > > > > > > > > > April 08: We saw from the outside that the implant was protruding > > > > > > uncomfortably through the eardrum. We decided that we needed to put > > > > > > cartilage reinforement on the ear drum, and this would give him a > > > > > > chance to look into why the implant was not performing as we had > > > > > > hoped. During the surgery, he installed the cartilage and found that > > > > > > the implant had actually broken my stapes and was embedded in the > > > > > > flesh beside the inner ear linkage. The current implant was useless > > > > > > because it was not long enough. We would need to be re-fitted with a > > > > > > TORP in the future if I indeed choose to do so. I luckily had a PET > > > > > > installed in the left ear which cleared the ear and finally, after 5 > > > > > > months, had one good ear. > > > > > > > > > > > > A few days after this last surgery I developed vertigo and spent a > > > > > > week immobilized in the hospital. I was quite surprised it took this > > > > > > many surgeries to actually develop a side-effect. It was the worst > > > > > > week of my life. I couldn't keep my eyes focused on anything. > > > > > > Couldn't walk straight and was the first time in my life that I > > > > > > looked in the mirror and actually looked green. I became well known > > > > > > for the guy that came into the doctor's office, and later to the > > > > > > hospital with my silver bathroom trashcan clutched in my arms. If I > > > > > > ever had to pick a personal hell, this experience would be it. > > > > > > > > > > > > Sept 08: Got another cold and my left ear PET fell out. CLOGGED. > > > > > > Replaced the PET. > > > > > > > > > > > > Today: My PET fell out about 2 weeks ago. I just woke up this morning > > > > > > with the feeling of fluid in my ear. Everyone knows the feeling. I > > > > > > lean my head back to take a drink and my hearing fades a bit. I've > > > > > > just moved to a new city and have been at my new job for about 3 > > > > > > months now. I have an appointment for a new ENT a week from today, > > > > > > but what I'm most fearful of is the hearing loss this will develop > > > > > > before a new PET is installed. Having one ear is tough and I need > > > > > > some advice. > > > > > > > > > > > > I'm trying to decide what I want to do with my right ear. I've looked > > > > > > into TORPS which have a lower success rate than PORPS because of the > > > > > > lack of stapes. Already having no luck with the first makes me > > > > > > hesitant to the alternative. If I don't have another implant > > > > > > installed, I will feel it has all been for nothing, but on the other > > > > > > hand I'm scared of having that ear cut on for a 4th time with the new > > > > > > risk of vertigo. I've looked into BAHAs which I feel would be a great > > > > > > outcome, but don't know if I can endure the procedures to have a plug > > > > > > in the side of my head. I'm feeling desperate at this point. I can't > > > > > > keep relying solely on just one ear. All I feel I can do at this > > > > > > point is throw my hands up in the air. > > > > > > > > > > > > I would love to hear from others who may have similar experiences. > > > > > > Thanks for letting me tell my story. I won't give up hope, but > > > > > > frustration is overpowering at times. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2009 Report Share Posted January 30, 2009 So...somehow my ear keeps filling up with mucus. Without a tube in it, it fills with mucus and slowly fades out my hearing. It turned into a slow fade when I leaned my head in different directions. In and out. It was driving me insane. I have cartilege reinforcements on my eardrum so there was basically a small area to put a new tube in. Had it done in-office. I just recently moved to a larger city and my previous doc would always put me under because he said that in my case, it would hurt too much...and boy howdy...did it hurt a LOT. I'm pretty tollerent of pain and was scared stiff of moving my head, and to get my hearing back in a 10 minute office visit...I would do it 10 more times for the outcome. The thing that intrigued me the most was that I watched the whole thing on a TV screen on the wall. I have never had that luxury. Never even seen the inside of my ear for that matter. I was torn between clinching my eyes closed from the pain and wrenching them back open to watch the tv screen. If you ever get the chance, it was awesome to say the least. > > > > > > > > > > > > > > > Hello , > > > > > I am sorry to hear that you have had such bad experiences. As far > as > > > > the TORP goes, my son's otologist has told him that there are some > new > > > > developments in the immediate future whereby a TORP can be adjusted > > > > after it is implanted at a later date. My son, having had 3 that all > > > > worked for only short periods of time is looking forward to this > coming > > > > on the market. > > > > > > > > > > > > > > > I wish you the best in the future. > > > > > Audrey > > > > > > > > > > > > > > > > > > > > > > > > > My Story > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Childhood: I had tubes in and out of my ears and my adnoids > removed. > > > > > > > > > > Counted up a total of 17 surgeries before the age of 10. I learned > > > > > > > > > > the " hold nose and blow " method, which started with my mom > putting a > > > > > > > > > > tube in my nose and blowing to depressurize my ears. So glad I > > > > > > > > > > learned to so it myself because the tube was just agonizing > > > > > > > > > > experience. > > > > > > > > > > > > > > > > > > > > circa sometime in 2004: 20 years free of ear problems. No pressure > > > > > > > > > > problems, etc. I moved into a house with gas heat with a dog and > two > > > > > > > > > > cats. I started to come down with a cold and saw an ad many times > for > > > > > > > > > > the drug Zicam which is still on the market today and decided to > give > > > > > > > > > > it a try. They have nasal swabs now, but at the time it was a > spray > > > > > > > > > > to be applied in the mouth. I'm not pointing blame at any one > thing, > > > > > > > > > > but believe it could be any combination of environmental variables > > > > > > > > > > that caused what came next. When I sprayed the Zicam into my > mouth, I > > > > > > > > > > felt what seemed like a sharpened pencil being jammed through my > > > > > > > > > > eardrum. It was the worst pain I have felt in my life. It was > almost > > > > > > > > > > immediately after spraying. This happened twice and I discontinued > > > > > > > > > > use of the spray. Allergies maybe? Zinc overdose? who knows. I've > > > > > > > > > > told my theory that Zicam had something to do with my future > problems > > > > > > > > > > and docs shoot it down every time. All I know is that from the > time I > > > > > > > > > > used Zicam and when I was diagnosed with a c-toma that my ear > > > > > > > > > > remained constantly clogged and I had to depressurize often. > > > > > > > > > > > > > > > > > > > > Aug 06: Diagnosed with a cholesteatoma in my right ear. Received a > > > > > > > > > > tympanomastoidectomy which replaced my eardrum and removed c- toma, > > > > > > > > > > incus and malleus and severed my chorda tympani nerve in that ear > > > > > > > > > > (taste nerve). Scheduled to re-explore in a year to make sure all > was > > > > > > > > > > removed and perform ossicular reconstruction. Of course, I had > > > > > > > > > > regular check-ups throughout the year. Just a sidenote that this > was > > > > > > > > > > my last semester of college. Boy was that an experience. Graduated > > > > > > > > > > with honors still. It was a " If I can make it through that, I can > > > > > > > > > > make it through anything " kind of experience for sure. > > > > > > > > > > > > > > > > > > > > Aug 07: I had a titanium implant installed. A PORP to be exact. > This > > > > > > > > > > created a bridge between my ear drum and the last remaining bone, > the > > > > > > > > > > Stapes. > > > > > > > > > > > > > > > > > > > > Nov 07: We realized my left eardrum had collapsed and were laying > > > > > > > > > > like saran wrap on the ear bones. To prevent another choleaseatoma > > > > > > > > > > and destruction of the bones in my once " good " ear, we acted > quickly > > > > > > > > > > and performed a tympanoplasty with cartilage reinforcement. This > > > > > > > > > > surgery again severed my remaining chorda tympani nerve, > supossedly > > > > > > > > > > rendering my taste to nothing. The bones were luckily saved and > > > > > > > > > > unharmed. At this time, we installed a PET (tube) in my right ear > > > > > > > > > > because it seemed clogged and was not conducting sound as it > should. > > > > > > > > > > Somehow, I can still taste. I'm pretty sure my brain is not > playing > > > > > > > > > > tricks on me because I can still taste. Not sure why or how, but I > > > > > > > > > > can. > > > > > > > > > > > > > > > > > > > > I got a cold right after surgery. Left ear completely clogged and > > > > > > > > > > right ear not working as I had hoped with a PET in it. I had the > > > > > > > > > > worst hearing I have had in my life. I became so scared of hearing > > > > > > > > > > loss that my partner and I started sign language lessons to > ensure we > > > > > > > > > > could communicate. I've never feared anything worse than being > unable > > > > > > > > > > to communicate. > > > > > > > > > > > > > > > > > > > > April 08: We saw from the outside that the implant was protruding > > > > > > > > > > uncomfortably through the eardrum. We decided that we needed to > put > > > > > > > > > > cartilage reinforement on the ear drum, and this would give him a > > > > > > > > > > chance to look into why the implant was not performing as we had > > > > > > > > > > hoped. During the surgery, he installed the cartilage and found > that > > > > > > > > > > the implant had actually broken my stapes and was embedded in the > > > > > > > > > > flesh beside the inner ear linkage. The current implant was > useless > > > > > > > > > > because it was not long enough. We would need to be re-fitted > with a > > > > > > > > > > TORP in the future if I indeed choose to do so. I luckily had a > PET > > > > > > > > > > installed in the left ear which cleared the ear and finally, > after 5 > > > > > > > > > > months, had one good ear. > > > > > > > > > > > > > > > > > > > > A few days after this last surgery I developed vertigo and spent a > > > > > > > > > > week immobilized in the hospital. I was quite surprised it took > this > > > > > > > > > > many surgeries to actually develop a side-effect. It was the worst > > > > > > > > > > week of my life. I couldn't keep my eyes focused on anything. > > > > > > > > > > Couldn't walk straight and was the first time in my life that I > > > > > > > > > > looked in the mirror and actually looked green. I became well > known > > > > > > > > > > for the guy that came into the doctor's office, and later to the > > > > > > > > > > hospital with my silver bathroom trashcan clutched in my arms. If > I > > > > > > > > > > ever had to pick a personal hell, this experience would be it. > > > > > > > > > > > > > > > > > > > > Sept 08: Got another cold and my left ear PET fell out. CLOGGED. > > > > > > > > > > Replaced the PET. > > > > > > > > > > > > > > > > > > > > Today: My PET fell out about 2 weeks ago. I just woke up this > morning > > > > > > > > > > with the feeling of fluid in my ear. Everyone knows the feeling. I > > > > > > > > > > lean my head back to take a drink and my hearing fades a bit. I've > > > > > > > > > > just moved to a new city and have been at my new job for about 3 > > > > > > > > > > months now. I have an appointment for a new ENT a week from today, > > > > > > > > > > but what I'm most fearful of is the hearing loss this will develop > > > > > > > > > > before a new PET is installed. Having one ear is tough and I need > > > > > > > > > > some advice. > > > > > > > > > > > > > > > > > > > > I'm trying to decide what I want to do with my right ear. I've > looked > > > > > > > > > > into TORPS which have a lower success rate than PORPS because of > the > > > > > > > > > > lack of stapes. Already having no luck with the first makes me > > > > > > > > > > hesitant to the alternative. If I don't have another implant > > > > > > > > > > installed, I will feel it has all been for nothing, but on the > other > > > > > > > > > > hand I'm scared of having that ear cut on for a 4th time with the > new > > > > > > > > > > risk of vertigo. I've looked into BAHAs which I feel would be a > great > > > > > > > > > > outcome, but don't know if I can endure the procedures to have a > plug > > > > > > > > > > in the side of my head. I'm feeling desperate at this point. I > can't > > > > > > > > > > keep relying solely on just one ear. All I feel I can do at this > > > > > > > > > > point is throw my hands up in the air. > > > > > > > > > > > > > > > > > > > > I would love to hear from others who may have similar experiences. > > > > > > > > > > Thanks for letting me tell my story. I won't give up hope, but > > > > > > > > > > frustration is overpowering at times. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Yes! Watching the whole thing play out on the TV is surreal! I had to have a certain area cauterized in my ear once. Ya know ... docs really ought to work on that ol' bedside manner thing. I'm usually a bit tense and not thinking too clearly. He said cauterize and I started thinking flame thrower down my ear canal. Doh! I never thought of a gentle painless chemical peel as he swabbed the area with what looked like a dirty little q-tip swap. Seeing the inside of my head on the big screen - that was an experience. I just had my latest visit on Thursday and got another pretty good report. He mentioned the possibility of a tube, because of some fluid, but decided to leave things well enough alone since I'm not in pain and doing pretty good with my hearing. After what wrote ... I think it was a wise choice! wrote: > > So...somehow my ear keeps filling up with mucus. Without a tube in > it, it fills with mucus and slowly fades out my hearing. It turned > into a slow fade when I leaned my head in different directions. In > and out. It was driving me insane. I have cartilege reinforcements on > my eardrum so there was basically a small area to put a new tube in. > Had it done in-office. I just recently moved to a larger city and my > previous doc would always put me under because he said that in my > case, it would hurt too much...and boy howdy...did it hurt a LOT. I'm > pretty tollerent of pain and was scared stiff of moving my head, and > to get my hearing back in a 10 minute office visit...I would do it 10 > more times for the outcome. > > The thing that intrigued me the most was that I watched the whole > thing on a TV screen on the wall. I have never had that luxury. Never > even seen the inside of my ear for that matter. I was torn between > clinching my eyes closed from the pain and wrenching them back open > to watch the tv screen. If you ever get the chance, it was awesome to > say the least. > > > > > > > > > > > > > > > > > > > > > > > Hello , > > > > > > > I am sorry to hear that you have had such bad experiences. As > far > > as > > > > > > the TORP goes, my son's otologist has told him that there are > some > > new > > > > > > developments in the immediate future whereby a TORP can be > adjusted > > > > > > after it is implanted at a later date. My son, having had 3 that > all > > > > > > worked for only short periods of time is looking forward to this > > coming > > > > > > on the market. > > > > > > > > > > > > > > > > > > > > > I wish you the best in the future. > > > > > > > Audrey > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > My Story > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Childhood: I had tubes in and out of my ears and my adnoids > > removed. > > > > > > > > > > > > > > Counted up a total of 17 surgeries before the age of 10. I > learned > > > > > > > > > > > > > > the " hold nose and blow " method, which started with my mom > > putting a > > > > > > > > > > > > > > tube in my nose and blowing to depressurize my ears. So glad I > > > > > > > > > > > > > > learned to so it myself because the tube was just agonizing > > > > > > > > > > > > > > experience. > > > > > > > > > > > > > > > > > > > > > > > > > > > > circa sometime in 2004: 20 years free of ear problems. No > pressure > > > > > > > > > > > > > > problems, etc. I moved into a house with gas heat with a dog > and > > two > > > > > > > > > > > > > > cats. I started to come down with a cold and saw an ad many > times > > for > > > > > > > > > > > > > > the drug Zicam which is still on the market today and decided > to > > give > > > > > > > > > > > > > > it a try. They have nasal swabs now, but at the time it was a > > spray > > > > > > > > > > > > > > to be applied in the mouth. I'm not pointing blame at any one > > thing, > > > > > > > > > > > > > > but believe it could be any combination of environmental > variables > > > > > > > > > > > > > > that caused what came next. When I sprayed the Zicam into my > > mouth, I > > > > > > > > > > > > > > felt what seemed like a sharpened pencil being jammed through my > > > > > > > > > > > > > > eardrum. It was the worst pain I have felt in my life. It was > > almost > > > > > > > > > > > > > > immediately after spraying. This happened twice and I > discontinued > > > > > > > > > > > > > > use of the spray. Allergies maybe? Zinc overdose? who knows. > I've > > > > > > > > > > > > > > told my theory that Zicam had something to do with my future > > problems > > > > > > > > > > > > > > and docs shoot it down every time. All I know is that from the > > time I > > > > > > > > > > > > > > used Zicam and when I was diagnosed with a c-toma that my ear > > > > > > > > > > > > > > remained constantly clogged and I had to depressurize often. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Aug 06: Diagnosed with a cholesteatoma in my right ear. > Received a > > > > > > > > > > > > > > tympanomastoidectomy which replaced my eardrum and removed c- > toma, > > > > > > > > > > > > > > incus and malleus and severed my chorda tympani nerve in that > ear > > > > > > > > > > > > > > (taste nerve). Scheduled to re-explore in a year to make sure > all > > was > > > > > > > > > > > > > > removed and perform ossicular reconstruction. Of course, I had > > > > > > > > > > > > > > regular check-ups throughout the year. Just a sidenote that > this > > was > > > > > > > > > > > > > > my last semester of college. Boy was that an experience. > Graduated > > > > > > > > > > > > > > with honors still. It was a " If I can make it through that, I > can > > > > > > > > > > > > > > make it through anything " kind of experience for sure. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Aug 07: I had a titanium implant installed. A PORP to be exact. > > This > > > > > > > > > > > > > > created a bridge between my ear drum and the last remaining > bone, > > the > > > > > > > > > > > > > > Stapes. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Nov 07: We realized my left eardrum had collapsed and were > laying > > > > > > > > > > > > > > like saran wrap on the ear bones. To prevent another > choleaseatoma > > > > > > > > > > > > > > and destruction of the bones in my once " good " ear, we acted > > quickly > > > > > > > > > > > > > > and performed a tympanoplasty with cartilage reinforcement. This > > > > > > > > > > > > > > surgery again severed my remaining chorda tympani nerve, > > supossedly > > > > > > > > > > > > > > rendering my taste to nothing. The bones were luckily saved and > > > > > > > > > > > > > > unharmed. At this time, we installed a PET (tube) in my right > ear > > > > > > > > > > > > > > because it seemed clogged and was not conducting sound as it > > should. > > > > > > > > > > > > > > Somehow, I can still taste. I'm pretty sure my brain is not > > playing > > > > > > > > > > > > > > tricks on me because I can still taste. Not sure why or how, > but I > > > > > > > > > > > > > > can. > > > > > > > > > > > > > > > > > > > > > > > > > > > > I got a cold right after surgery. Left ear completely clogged > and > > > > > > > > > > > > > > right ear not working as I had hoped with a PET in it. I had the > > > > > > > > > > > > > > worst hearing I have had in my life. I became so scared of > hearing > > > > > > > > > > > > > > loss that my partner and I started sign language lessons to > > ensure we > > > > > > > > > > > > > > could communicate. I've never feared anything worse than being > > unable > > > > > > > > > > > > > > to communicate. > > > > > > > > > > > > > > > > > > > > > > > > > > > > April 08: We saw from the outside that the implant was > protruding > > > > > > > > > > > > > > uncomfortably through the eardrum. We decided that we needed to > > put > > > > > > > > > > > > > > cartilage reinforement on the ear drum, and this would give him > a > > > > > > > > > > > > > > chance to look into why the implant was not performing as we had > > > > > > > > > > > > > > hoped. During the surgery, he installed the cartilage and found > > that > > > > > > > > > > > > > > the implant had actually broken my stapes and was embedded in > the > > > > > > > > > > > > > > flesh beside the inner ear linkage. The current implant was > > useless > > > > > > > > > > > > > > because it was not long enough. We would need to be re-fitted > > with a > > > > > > > > > > > > > > TORP in the future if I indeed choose to do so. I luckily had a > > PET > > > > > > > > > > > > > > installed in the left ear which cleared the ear and finally, > > after 5 > > > > > > > > > > > > > > months, had one good ear. > > > > > > > > > > > > > > > > > > > > > > > > > > > > A few days after this last surgery I developed vertigo and > spent a > > > > > > > > > > > > > > week immobilized in the hospital. I was quite surprised it took > > this > > > > > > > > > > > > > > many surgeries to actually develop a side-effect. It was the > worst > > > > > > > > > > > > > > week of my life. I couldn't keep my eyes focused on anything. > > > > > > > > > > > > > > Couldn't walk straight and was the first time in my life that I > > > > > > > > > > > > > > looked in the mirror and actually looked green. I became well > > known > > > > > > > > > > > > > > for the guy that came into the doctor's office, and later to the > > > > > > > > > > > > > > hospital with my silver bathroom trashcan clutched in my arms. > If > > I > > > > > > > > > > > > > > ever had to pick a personal hell, this experience would be it. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Sept 08: Got another cold and my left ear PET fell out. CLOGGED. > > > > > > > > > > > > > > Replaced the PET. > > > > > > > > > > > > > > > > > > > > > > > > > > > > Today: My PET fell out about 2 weeks ago. I just woke up this > > morning > > > > > > > > > > > > > > with the feeling of fluid in my ear. Everyone knows the > feeling. I > > > > > > > > > > > > > > lean my head back to take a drink and my hearing fades a bit. > I've > > > > > > > > > > > > > > just moved to a new city and have been at my new job for about 3 > > > > > > > > > > > > > > months now. I have an appointment for a new ENT a week from > today, > > > > > > > > > > > > > > but what I'm most fearful of is the hearing loss this will > develop > > > > > > > > > > > > > > before a new PET is installed. Having one ear is tough and I > need > > > > > > > > > > > > > > some advice. > > > > > > > > > > > > > > > > > > > > > > > > > > > > I'm trying to decide what I want to do with my right ear. I've > > looked > > > > > > > > > > > > > > into TORPS which have a lower success rate than PORPS because > of > > the > > > > > > > > > > > > > > lack of stapes. Already having no luck with the first makes me > > > > > > > > > > > > > > hesitant to the alternative. If I don't have another implant > > > > > > > > > > > > > > installed, I will feel it has all been for nothing, but on the > > other > > > > > > > > > > > > > > hand I'm scared of having that ear cut on for a 4th time with > the > > new > > > > > > > > > > > > > > risk of vertigo. I've looked into BAHAs which I feel would be a > > great > > > > > > > > > > > > > > outcome, but don't know if I can endure the procedures to have > a > > plug > > > > > > > > > > > > > > in the side of my head. I'm feeling desperate at this point. I > > can't > > > > > > > > > > > > > > keep relying solely on just one ear. All I feel I can do at this > > > > > > > > > > > > > > point is throw my hands up in the air. > > > > > > > > > > > > > > > > > > > > > > > > > > > > I would love to hear from others who may have similar > experiences. > > > > > > > > > > > > > > Thanks for letting me tell my story. I won't give up hope, but > > > > > > > > > > > > > > frustration is overpowering at times. > > > > > > > > > > > > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Don't get me wrong. I think my last doc was right in that I am a special case as far as tubes go. I have cartilege reinforcements on my eardrum which tightens the drum and gives little room to put the tube in. It did hurt like the dickens, but if I had a choice between the 2 minutes of pain or going under general anesthia again...I would pick the pain any day. I don't think the pain I experienced would be the same for everyone. As far as your prognosis...Congrats! It's always good to walk out with a clean bill of health. If the fluid and pressure builds up...tubes will work wonders, so don't let my experience scare you. I know what to expect now if the doc says cauterize tho. Thanks! --- In cholesteatoma , " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Hi Macelo! Weclome!! In my opinion, the first step to any of the problems below are either chiropractic care or physical therapy. Actually both together helped me last an additional 2 years before I needed surgery. There are so many options and so many doctors that you can and will hear about on this group. Everyone has there own opinions on what works best for them. Just remember that none of us are medical professionals (although I think we do have an RN or two on the group that I would definitely believe in). We are all very open and honest about everything in this group and we all help each other every day live through our chronic pain. Some of us work full time, go to school, have children, and live very normal lives. Others are older and are homebound. They live on social security and have basically met the ropes end to what can be done for them. I currently am a 31 year old female and I am sitting at home in week two of recovering from my second cervical spine surgery. I am now fused from C2 - C7. I start PT next week and hopefully within 6 weeks or so I will be back to work and back to a normal life. Other people on here have had similiar cervical or lumbar surgeries to mine and have been out for 12 weeks or longer and still, are not cured. We are all very sympathetic to everyone's stories and feelings here. Please feel free to email me privately or continue to to use the group alias.  I hope you have a pain free day!  Heflin From: Lidia Araujo <lidinhamaria@...> Subject: my story neck pain Date: Monday, March 16, 2009, 11:08 AM My name is Marcelo, I am 32. I have been experiencing lower back pain, sciatica pain in my rigth leg and foot and stiffnes in my left leg since April 2008. Starting August 2008, I also feel pain on my neck, shoulders and arms. MRI exams show " mild to moderate herniation " on L5/S1 and also on C5/C6 with compression of the thecal sac. My symptons still get pretty bad at times, but they are always changing. There is not a moment without some pain or stiffness however. I wonder if other people here experience the same thing. Also, is there anyone who had herniated discs but feels much better now? How long did it take? What helped most? thank you very much for your attention, Marcelo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2009 Report Share Posted March 16, 2009 Hi Macelo! Weclome!! In my opinion, the first step to any of the problems below are either chiropractic care or physical therapy. Actually both together helped me last an additional 2 years before I needed surgery. There are so many options and so many doctors that you can and will hear about on this group. Everyone has there own opinions on what works best for them. Just remember that none of us are medical professionals (although I think we do have an RN or two on the group that I would definitely believe in). We are all very open and honest about everything in this group and we all help each other every day live through our chronic pain. Some of us work full time, go to school, have children, and live very normal lives. Others are older and are homebound. They live on social security and have basically met the ropes end to what can be done for them. I currently am a 31 year old female and I am sitting at home in week two of recovering from my second cervical spine surgery. I am now fused from C2 - C7. I start PT next week and hopefully within 6 weeks or so I will be back to work and back to a normal life. Other people on here have had similiar cervical or lumbar surgeries to mine and have been out for 12 weeks or longer and still, are not cured. We are all very sympathetic to everyone's stories and feelings here. Please feel free to email me privately or continue to to use the group alias.  I hope you have a pain free day!  Heflin From: Lidia Araujo <lidinhamaria@...> Subject: my story neck pain Date: Monday, March 16, 2009, 11:08 AM My name is Marcelo, I am 32. I have been experiencing lower back pain, sciatica pain in my rigth leg and foot and stiffnes in my left leg since April 2008. Starting August 2008, I also feel pain on my neck, shoulders and arms. MRI exams show " mild to moderate herniation " on L5/S1 and also on C5/C6 with compression of the thecal sac. My symptons still get pretty bad at times, but they are always changing. There is not a moment without some pain or stiffness however. I wonder if other people here experience the same thing. Also, is there anyone who had herniated discs but feels much better now? How long did it take? What helped most? thank you very much for your attention, Marcelo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi Marcelo, Â Sorry to hear about your pain, but glad you found this group! The people here are very helpful & supportive. As I was reading your post I wondered if you have fibromyalgia? I'm not a medical proffesional by any means, but the areas you said hurt and the fact that you always hurt & it's widespread, made me wonder about fibromyalgia. Do you have any sleep problems? Â I wish you the best & hope you find some answers and your pain is resolved. Â Take care, Â Â From: Lidia Araujo <lidinhamaria@...> Subject: my story neck pain Date: Monday, March 16, 2009, 10:08 AM My name is Marcelo, I am 32. I have been experiencing lower back pain, sciatica pain in my rigth leg and foot and stiffnes in my left leg since April 2008. Starting August 2008, I also feel pain on my neck, shoulders and arms. MRI exams show " mild to moderate herniation " on L5/S1 and also on C5/C6 with compression of the thecal sac. My symptons still get pretty bad at times, but they are always changing. There is not a moment without some pain or stiffness however. I wonder if other people here experience the same thing. Also, is there anyone who had herniated discs but feels much better now? How long did it take? What helped most? thank you very much for your attention, Marcelo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi Marcelo, Â Sorry to hear about your pain, but glad you found this group! The people here are very helpful & supportive. As I was reading your post I wondered if you have fibromyalgia? I'm not a medical proffesional by any means, but the areas you said hurt and the fact that you always hurt & it's widespread, made me wonder about fibromyalgia. Do you have any sleep problems? Â I wish you the best & hope you find some answers and your pain is resolved. Â Take care, Â Â From: Lidia Araujo <lidinhamaria@...> Subject: my story neck pain Date: Monday, March 16, 2009, 10:08 AM My name is Marcelo, I am 32. I have been experiencing lower back pain, sciatica pain in my rigth leg and foot and stiffnes in my left leg since April 2008. Starting August 2008, I also feel pain on my neck, shoulders and arms. MRI exams show " mild to moderate herniation " on L5/S1 and also on C5/C6 with compression of the thecal sac. My symptons still get pretty bad at times, but they are always changing. There is not a moment without some pain or stiffness however. I wonder if other people here experience the same thing. Also, is there anyone who had herniated discs but feels much better now? How long did it take? What helped most? thank you very much for your attention, Marcelo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi Marcelo, Â Sorry to hear about your pain, but glad you found this group! The people here are very helpful & supportive. As I was reading your post I wondered if you have fibromyalgia? I'm not a medical proffesional by any means, but the areas you said hurt and the fact that you always hurt & it's widespread, made me wonder about fibromyalgia. Do you have any sleep problems? Â I wish you the best & hope you find some answers and your pain is resolved. Â Take care, Â Â From: Lidia Araujo <lidinhamaria@...> Subject: my story neck pain Date: Monday, March 16, 2009, 10:08 AM My name is Marcelo, I am 32. I have been experiencing lower back pain, sciatica pain in my rigth leg and foot and stiffnes in my left leg since April 2008. Starting August 2008, I also feel pain on my neck, shoulders and arms. MRI exams show " mild to moderate herniation " on L5/S1 and also on C5/C6 with compression of the thecal sac. My symptons still get pretty bad at times, but they are always changing. There is not a moment without some pain or stiffness however. I wonder if other people here experience the same thing. Also, is there anyone who had herniated discs but feels much better now? How long did it take? What helped most? thank you very much for your attention, Marcelo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi Marcelo, Â Sorry to hear about your pain, but glad you found this group! The people here are very helpful & supportive. As I was reading your post I wondered if you have fibromyalgia? I'm not a medical proffesional by any means, but the areas you said hurt and the fact that you always hurt & it's widespread, made me wonder about fibromyalgia. Do you have any sleep problems? Â I wish you the best & hope you find some answers and your pain is resolved. Â Take care, Â Â From: Lidia Araujo <lidinhamaria@...> Subject: my story neck pain Date: Monday, March 16, 2009, 10:08 AM My name is Marcelo, I am 32. I have been experiencing lower back pain, sciatica pain in my rigth leg and foot and stiffnes in my left leg since April 2008. Starting August 2008, I also feel pain on my neck, shoulders and arms. MRI exams show " mild to moderate herniation " on L5/S1 and also on C5/C6 with compression of the thecal sac. My symptons still get pretty bad at times, but they are always changing. There is not a moment without some pain or stiffness however. I wonder if other people here experience the same thing. Also, is there anyone who had herniated discs but feels much better now? How long did it take? What helped most? thank you very much for your attention, Marcelo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 If you looking for a 2nd opinion go and see Brad Thedinger in downtown KCMO, 31st and Broadway. He is known to be one of the best Otoligist's in the country. Tom Hansen From: hq67thunder2 <hq67thunder2@...>cholesteatoma Sent: Tuesday, August 11, 2009 7:01:10 AMSubject: My Story I was in the Army for 6 years. I moved to Kansas and was seeing the VA. I told a Docotr that my ear was draining and semlt really bad. They sent me to a ENT Doctor in the Hosiptal who just kept telling me its a plain old ear infection. After about a year and half he releazied the stin k old ear of mine might have something wrong. So I went to a VA hospital in KAnsas City and the first thing the did was order a CT Scan. They found a little ball of cholesteatoma I had my first Surgery in July of 2008. It was 8 hours and it ate everything away it ate half way threw my skull. But they got it all. So I continued my follow ups did everything they said . About april, may time I was feeling weird sick some drainage. I say a ent doc again and told him and said I think the infection is back since I knew what it felt like before and smelt bad. He looked in with his scope and said nope yourt fine see you in July for your Surgery to replace my hearing bones. Well JUly 2009 rolled around I was excited but still felt weird. I told the Doctor he was new that day and they said well it looks a lil wet in there don't know if we can operate today.They came back and said the Surgein will do it it will be a hour and half to two hours. Me and my wife were happy.Well 7 hours later with a cholesteatoma that was eating at the shelf of my skull that hold smy brain up. And cholesteatoma that they said was pretty much everywhere!! ! My wife was pissed as so was I since I told them it was back. Did I mention that they kept coming out and saying oh he might have meningtis and he has infection which the nurse said its a cholesteatoma well no kidding. My wife asked them to take a culture and they wouldn't until she pulled out my insurance card from work. So know I have my senator involved since all this . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2009 Report Share Posted August 11, 2009 Sorry to hear you have had to have such a bad experience. I always say go by you gut instinct its never wrong. I have also been in a situation where the ENT wont do anything. it took me almost a year to get a surgeon who was prepared to do anything. Like you it had eaten away everything and it was so close to my brain the surgeon told me afterwards that he didnt know if I would come out alive.He said he had risked his entire career on doing the surgeon and he was an elderly man. My surgery also took 8 hours and that was just to clean out all the damaged and infected tissue. I had no mastoid bone as it was removed in my teens when I went through a similar situation, In 3 months I went through 20hrs of surgery as they had to take skin off my thigh to graft into my canal as there was mo tissue left. Unfortunately the first one did not take so they had to redo it. He made me a new eardrum using cartilage but could not replace the hearing bones. It was very traumatic and painful and whenever I think about it it makes me angry that those doctors who have made a Hippocratic oath nearly let me die. Unfortunately we all seem to wind up with one or more ENT who should in my opinion not be allowed to practice. I hope they sort the infection and everything else soon I will be praying for you. q67thunder2 wrote: > > > I was in the Army for 6 years. I moved to Kansas and was seeing the > VA. I told a Docotr that my ear was draining and semlt really bad. > They sent me to a ENT Doctor in the Hosiptal who just kept telling me > its a plain old ear infection. After about a year and half he > releazied the stin k old ear of mine might have something wrong. So I > went to a VA hospital in KAnsas City and the first thing the did was > order a CT Scan. They found a little ball of cholesteatoma I had my > first Surgery in July of 2008. It was 8 hours and it ate everything > away it ate half way threw my skull. But they got it all. So I > continued my follow ups did everything they said . About april, may > time I was feeling weird sick some drainage. I say a ent doc again and > told him and said I think the infection is back since I knew what it > felt like before and smelt bad. He looked in with his scope and said > nope yourt fine see you in July for your Surgery to replace my hearing > bones. Well JUly 2009 rolled around I was excited but still felt > weird. I told the Doctor he was new that day and they said well it > looks a lil wet in there don't know if we can operate today. > > They came back and said the Surgein will do it it will be a hour and > half to two hours. Me and my wife were happy. > > Well 7 hours later with a cholesteatoma that was eating at the shelf > of my skull that hold smy brain up. And cholesteatoma that they said > was pretty much everywhere!!! My wife was pissed as so was I since I > told them it was back. Did I mention that they kept coming out and > saying oh he might have meningtis and he has infection which the nurse > said its a cholesteatoma well no kidding. My wife asked them to take a > culture and they wouldn't until she pulled out my insurance card from > work. So know I have my senator involved since all this . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 HI Bev, Welcome to the group- just curious- how many of us suffer from sciatica? From: bev.heron <bev.heron@...>Subject: [ ] My Story Received: Tuesday, February 2, 2010, 12:48 PM Hi I have just discovered this site and I'm hoping that I will be able to gain some ideas on the way ahead.My story is I was fused from i think T5-L3/4 in 1984 using a Harrington rod. Until January 2009 I had very little problems. However, I bent down to pick up my handbag in a hurry, tore a muscle and have not recovered since. I experience severe burning at the top and bottom of my rod and have been told I have moderate degenerative changes to my lumbar spine. I also suffer severe irritation to the left of my sacrum when anything presses on it and severe siatica down my left leg. I saw a consultant last year and the only hope he could offer me is pain relief. At 41 years old I'm not ready to accept this. Does anyone have any ideas for treatment that they can share with me.I would be very greatful for your helpRegards Bev Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 Hello Bev, Welcome to the group. I am sorry you are experiencing such a painful episode. It seems that we older scolis fall into two camps....either a number of years have passed since our original surgeries and they have been relatively pain free. This bunch is really blindsided when they all of a sudden find problems cropping up as they really thought they were " good to go " for life. The other group of members have had few days in their lives without some level of pain or dysfunction, and but they too often finding themselves facing even greater challenges as they age. In any event, not that I have any medical background or training, but it would seem that there must be more than a torn muscle going on or you wouldnt be experiencing the symptoms you are. You dont say where you live, or who you have seen, but I think you will find the best thing you can do for yourself is make sure you get yourself to a ortho spine specialist who specializes in deformity, and in particular adults. I would also verify that the doctor that you consult has a LOT of experience, recently, treating post Harrington patients of your vintage. I traveled a road not too dissimilar to you, and was scared and frustrated when my local ortho...a good all round guy who you would think would have the facts, pretty much said what your doc did, " Nothing we can do, you will just have to live with it " . Of course, it turns out what he should have said was " There is nothing I can do, but let me refer you to one of the rarer surgeons who treat folks like you. " Its an more of less an accepted fact that those with long fusions are highly likely to experience accelerated degeneration above and below their fusion. Specifically developing flatback tends to be a grayer area, but very generally speaking, flatback tends to develop when the fusion extended into L4 or L5. But not always. Other things can happen related to your earlier fusion. I have even met a woman whose pelvis fractured along the site of her earlier harvest. I am not trying to scare you...I am just trying to lay out all the reasons why you will do yourself a favor if you go to see a doctor that knows what kinds of things he might be looking for. At the end of the day there is a chance that nothing medical can be done, saving meds, but I know that I could not imagining living out my lifespan if I had to endure the kind of pain I had prior to revision. It was ghastly... If you read through old posts here you will learn there are a handful of doctors that many of us have consulted or had surgery with and if you tell us where you are we can point you in the right direction. The other suggestion is to look on the Scoliosis Research Society's website (www.srs.org) and use their physician locator. Members in this society must devote a significant portion of their practice to deformity, so you at least will be seen by someone that knows what might be possible...even if they are not going to deliver it to you. Its all a learning process...and we are here for you whatever you need. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010  Bev, I do, although it is not anywhere near as bad as it could be. So far I find that if I do my stretching exercises and open up the space between my lower vertebrae, it keeps the pain minimal. But I think I am one the much more fortunate ones. Jeanne [ ] My Story Received: Tuesday, February 2, 2010, 12:48 PM Hi I have just discovered this site and I'm hoping that I will be able to gain some ideas on the way ahead.My story is I was fused from i think T5-L3/4 in 1984 using a Harrington rod. Until January 2009 I had very little problems. However, I bent down to pick up my handbag in a hurry, tore a muscle and have not recovered since. I experience severe burning at the top and bottom of my rod and have been told I have moderate degenerative changes to my lumbar spine. I also suffer severe irritation to the left of my sacrum when anything presses on it and severe siatica down my left leg. I saw a consultant last year and the only hope he could offer me is pain relief. At 41 years old I'm not ready to accept this. Does anyone have any ideas for treatment that they can share with me.I would be very greatful for your helpRegards Bev Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2010 Report Share Posted February 2, 2010 I have piriformis syndrome since revision surgery which is in the same area. I have it on my left side and now I'm having problems with my right knee. It is swollen and aches.PeggySent from my Verizon Wireless BlackBerryFrom: Izarah Star <izarahstar@...>Date: Tue, 2 Feb 2010 14:16:23 -0800 (PST)< >Subject: Re: [ ] My Story HI Bev, Welcome to the group- just curious- how many of us suffer from sciatica?From: bev.heron <bev.heron >Subject: [ ] My Story Received: Tuesday, February 2, 2010, 12:48 PM Hi I have just discovered this site and I'm hoping that I will be able to gain some ideas on the way ahead.My story is I was fused from i think T5-L3/4 in 1984 using a Harrington rod. Until January 2009 I had very little problems. However, I bent down to pick up my handbag in a hurry, tore a muscle and have not recovered since. I experience severe burning at the top and bottom of my rod and have been told I have moderate degenerative changes to my lumbar spine. I also suffer severe irritation to the left of my sacrum when anything presses on it and severe siatica down my left leg. I saw a consultant last year and the only hope he could offer me is pain relief. At 41 years old I'm not ready to accept this. Does anyone have any ideas for treatment that they can share with me.I would be very greatful for your helpRegards BevLooking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Hi Cam Thank you for your response. I actually live in the UK and my operation was done by a Dr Dorgan at the then Royal Liverpool Childrens hospital in 1984. Unfortunately Dr Dorgan retired last year. I have been referred to a Dr Mateus, who again is based in Liverpool, UK. I am aware that this group is predominantly viewed by people who live in this US, so although I have read reports on here regarding various spinal specialists they appear to be in the US. I think I was very naive and certainly fell into the group that thought i was 'good for life', so this experience has knocked me for six. However, I am also determined that I will try and do all I can to maintain a good quality of life. Can I ask what kind of revision surgery that you had. I have been to my doctor again today to ask to be re-referred for a second opinion and have suggested Hope hospital in Manchester. Regards Bev > > Hello Bev, > > Welcome to the group. I am sorry you are experiencing such a painful episode. It seems that we older scolis fall into two camps....either a number of years have passed since our original surgeries and they have been relatively pain free. This bunch is really blindsided when they all of a sudden find problems cropping up as they really thought they were " good to go " for life. The other group of members have had few days in their lives without some level of pain or dysfunction, and but they too often finding themselves facing even greater challenges as they age. > > In any event, not that I have any medical background or training, but it would seem that there must be more than a torn muscle going on or you wouldnt be experiencing the symptoms you are. You dont say where you live, or who you have seen, but I think you will find the best thing you can do for yourself is make sure you get yourself to a ortho spine specialist who specializes in deformity, and in particular adults. I would also verify that the doctor that you consult has a LOT of experience, recently, treating post Harrington patients of your vintage. > > I traveled a road not too dissimilar to you, and was scared and frustrated when my local ortho...a good all round guy who you would think would have the facts, pretty much said what your doc did, " Nothing we can do, you will just have to live with it " . Of course, it turns out what he should have said was " There is nothing I can do, but let me refer you to one of the rarer surgeons who treat folks like you. " > > Its an more of less an accepted fact that those with long fusions are highly likely to experience accelerated degeneration above and below their fusion. Specifically developing flatback tends to be a grayer area, but very generally speaking, flatback tends to develop when the fusion extended into L4 or L5. But not always. Other things can happen related to your earlier fusion. I have even met a woman whose pelvis fractured along the site of her earlier harvest. > > I am not trying to scare you...I am just trying to lay out all the reasons why you will do yourself a favor if you go to see a doctor that knows what kinds of things he might be looking for. At the end of the day there is a chance that nothing medical can be done, saving meds, but I know that I could not imagining living out my lifespan if I had to endure the kind of pain I had prior to revision. It was ghastly... > > If you read through old posts here you will learn there are a handful of doctors that many of us have consulted or had surgery with and if you tell us where you are we can point you in the right direction. The other suggestion is to look on the Scoliosis Research Society's website (www.srs.org) and use their physician locator. Members in this society must devote a significant portion of their practice to deformity, so you at least will be seen by someone that knows what might be possible...even if they are not going to deliver it to you. > > Its all a learning process...and we are here for you whatever you need. > > Take Care, Cam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2010 Report Share Posted February 3, 2010 Hi Peggy Thanks for this i've have just read up on Periformis syndrome and the symptoms do sound similar. I will discuss this with my consultant when I get an appointment and in the mean time I have found some useful exercises on line regards Bev > > > From: bev.heron <bev.heron@...> > Subject: [ ] My Story > > Received: Tuesday, February 2, 2010, 12:48 PM > > >  > > > > Hi > I have just discovered this site and I'm hoping that I will be able to gain some ideas on the way ahead. > My story is I was fused from i think T5-L3/4 in 1984 using a Harrington rod. Until January 2009 I had very little problems. However, I bent down to pick up my handbag in a hurry, tore a muscle and have not recovered since. > I experience severe burning at the top and bottom of my rod and have been told I have moderate degenerative changes to my lumbar spine. I also suffer severe irritation to the left of my sacrum when anything presses on it and severe siatica down my left leg. > I saw a consultant last year and the only hope he could offer me is pain relief. At 41 years old I'm not ready to accept this. > > Does anyone have any ideas for treatment that they can share with me. > > I would be very greatful for your help > > Regards Bev > > > > > > > > > > __________________________________________________________________ > Make your browsing faster, safer, and easier with the new Internet Explorer® 8. Optimized for Get it Now for Free! at http://downloads./ca/internetexplorer/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 I just read your story and it just completely blew me away. I also married a second time (the past 12 years, 2nd time was the " charm " and have two teenagers and two young children (ages 17,15,6 and 3). Thanks for reminding us that ALL children are a blessing. I couldn't agree more! I lost my baby girl with trisomy 14 in my second trimester a year before Isabelle was conceived (trisomy 14 babies do not survive much longer than that typically but can live to birth). I was grateful to have her with me as long as I did...she will always be remembered.. -Hadley (Isabelle, 6 yrs, polyarticular JRA, dx age 2, MTX) > > Hi all, > > My 5 year old daughter has systemic JRA and has since she was about 2 years > old. But it all started with her having Down syndrome. Today I am reaching > out to you all to let you know today is World Down syndrome Day. I have a > blog that I write about health, veganism, food and beauty on but today I > have written my personal story with Down syndrome on it. I would love for > you all to read it and if you have your own personal story either from > knowing someone else or having your own child with Down syndrome I would > love comments to so we can spread the word. If not you will at least be > educated a little bit more about Down syndrome and read a person story. > > Warning it is a bit long but is heartfelt and honest. > > www.theveggiegal.com > > Thanks > > > > -- > Kim~The Veggie Gal > > http://www.theveggiegal.com/blog/ > Steps to becoming healthier through a plant based vegan diet with natural > health and beauty tips. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 my story Hi all, My 5 year old daughter has systemic JRA and has since she was about 2 years old. But it all started with her having Down syndrome. Today I am reaching out to you all to let you know today is World Down syndrome Day. I have a blog that I write about health, veganism, food and beauty on but today I have written my personal story with Down syndrome on it. I would love for you all to read it and if you have your own personal story either from knowing someone else or having your own child with Down syndrome I would love comments to so we can spread the word. If not you will at least be educated a little bit more about Down syndrome and read a person story. Warning it is a bit long but is heartfelt and honest. www.theveggiegal.com Thanks -- Kim~The Veggie Gal http://www.theveggiegal.com/blog/ Steps to becoming healthier through a plant based vegan diet with natural health and beauty tips. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2010 Report Share Posted March 24, 2010 Kim, I read your story today and I looked at the pictures of your daughter. She certainly is beautiful. One of my very best friends has a child with Down Syndrome and she is one of the most loving children I have ever been around. Now yes, she can also have all the other emotions as well but she is wonderful. Abby will be 12 next month and I just adore her. Abby was in regular education up through 4th grade in a private school. Her parents worked with her alot, took her to speach therapy regularly and even hired a para to work at the school to be with her in order to keep her at grade level. Abby is a twin and her sister is her very best friend. Some people think Down Syndrome children are just special needs kids. But if they spend any time with one they will soon learn that they are not just special needs they are so very very special. Thank you for sharing your story. Veri my story Hi all, My 5 year old daughter has systemic JRA and has since she was about 2 years old. But it all started with her having Down syndrome. Today I am reaching out to you all to let you know today is World Down syndrome Day. I have a blog that I write about health, veganism, food and beauty on but today I have written my personal story with Down syndrome on it. I would love for you all to read it and if you have your own personal story either from knowing someone else or having your own child with Down syndrome I would love comments to so we can spread the word. If not you will at least be educated a little bit more about Down syndrome and read a person story. Warning it is a bit long but is heartfelt and honest. www.theveggiegal.com Thanks -- Kim~The Veggie Gal http://www.theveggiegal.com/blog/ Steps to becoming healthier through a plant based vegan diet with natural health and beauty tips. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2010 Report Share Posted July 14, 2010 Jazmina,So good to hear of your great improvements.There's a lot to be learned about Iodine. I hope you are reading in our group files. In our first file (01) in the Iodine New Member document there is a link to the article about determining need by disappearance from skin (skin patch test) that you might want to consider.Welcome to the world of Iodine.Judy This is your invitation to pray for and/or help Brioni, a young lady from my church fellowship, who has had years of serious health challenges and now cancer. Here's the info - http://www.giveforward.org/helpbrioni/--- On Wed, 7/14/10, jazmina111 <jazminallen@...> wrote:From: jazmina111 <jazminallen@...>Subject: My storyiodine Date: Wednesday, July 14, 2010, 12:46 PM I just wanted to share my story with all of you. I was in a major accident 5 years ago and around 2 years after this accident I developed hypothroidism. I feel that it was related to my accident as my body was in a lot of shock, but I digress. I realized that all of my symptoms that I had been dealing with we...re in fact because of hypothroidism a year ago. Since then I went to my doctor and started taking synthroid, I was also going to a natropath who got me on some natural thyroid supports as well, but as I increased the synthroid meds and natural supports I still wasn't feeling 100%. I became frustrated and after hearing about this holistic doctor I decided to give him a try as nothing else was really working. He checked all of my organs, glands, checked to see how my circulation was doing and if I had any viruses, bacteria, parasites, fungus, heavy metals or candida. Now a healthy reading is 50 and a lot of my organs were operating well below this number. He got me on a detox for parasites, viruses and bacteria and gave me a few things to take. A ... See Moregood probiotic, magnesium and iodine! Iodine! My thyroid was functioning at a 30 well below where it should have been even though my blood tests came back as balanced. I started taking Lugol's Oil, which is an amazing iodine liquid you use topically. Now with this oil you need to see how much your body needs, you do this by seeing how fast it absorbs into your system. Starting with 2 drops and seeing how fast is disappears over a 24 hour period. If in a few hours or even by bedtime it's gone you need more, you keep checking till you find your dose. My dose is 5 drops a day. Since I started taking the iodine I cut my thyroid meds down to a 1/4 of what they were and I am feeling fabulous! I haven't felt this good in years! It's only a matter of time before I can stop taking the synthoid all together. My thyroid was checked and is a wonderful 50 and a lot of my organs have vastly improved, this is all after only 2 months, I can't wait to see what the next 2 will bring! I had to share my story as this has worked wonders for me and I wish us all to be happy and healthy & #9829; In case anyone is curious about this oil, I found this site: http://www.naturodoc.com/ND-Lug1.htm it seems to have a good write up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2010 Report Share Posted July 14, 2010 Hi Judy Thank you for that info it's all very fasinating to me. I guess with the testing I am doing with my holistic doctor I will be able to find out if I am taking to much iodine by how my readings are next month. I am going to look further into this bromide toxicity, I know that I have tested negetive for heavy metals in my system and feel that I own that to taking chlorella. Although I have just introduced seafood back into my diet so... Anyway, thank you:) Jazmin > > From: jazmina111 <jazminallen@...> > Subject: My story > iodine > Date: Wednesday, July 14, 2010, 12:46 PM > > > > > > > >  > > > > > > > > > > I just wanted to share my story with all of you. I was in a major accident 5 years ago and around 2 years after this accident I developed hypothroidism. I feel that it was related to my accident as my body was in a lot of shock, but I digress. I realized that all of my symptoms that I had been dealing with we...re in fact because of hypothroidism a year ago. Since then I went to my doctor and started taking synthroid, I was also going to a natropath who got me on some natural thyroid supports as well, but as I increased the synthroid meds and natural supports I still wasn't feeling 100%. I became frustrated and after hearing about this holistic doctor I decided to give him a try as nothing else was really working. > > > > He checked all of my organs, glands, checked to see how my circulation was doing and if I had any viruses, bacteria, parasites, fungus, heavy metals or candida. Now a healthy reading is 50 and a lot of my organs were operating well below this number. He got me on a detox for parasites, viruses and bacteria and gave me a few things to take. A ... See Moregood probiotic, magnesium and iodine! Iodine! My thyroid was functioning at a 30 well below where it should have been even though my blood tests came back as balanced. I started taking Lugol's Oil, which is an amazing iodine liquid you use topically. Now with this oil you need to see how much your body needs, you do this by seeing how fast it absorbs into your system. Starting with 2 drops and seeing how fast is disappears over a 24 hour period. If in a few hours or even by bedtime it's gone you need more, you keep checking till you find your dose. My dose is 5 drops a day. > > > > Since I started taking the iodine I cut my thyroid meds down to a 1/4 of what they were and I am feeling fabulous! I haven't felt this good in years! It's only a matter of time before I can stop taking the synthoid all together. My thyroid was checked and is a wonderful 50 and a lot of my organs have vastly improved, this is all after only 2 months, I can't wait to see what the next 2 will bring! > > > > I had to share my story as this has worked wonders for me and I wish us all to be happy and healthy & #9829; > > > > In case anyone is curious about this oil, I found this site: http://www.naturodoc.com/ND-Lug1.htm it seems to have a good write up. > Quote Link to comment Share on other sites More sharing options...
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