Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Per This is why I grow bacteria with cell walls and observe there form. I found early in the piece trying to look for bacteria straight from a swab would often not reveal anything, I now grow first and gram stain afterwards. This mattman stuff is hogwash because she wasted 70 years as a microbiologist and no-one is any the better for it. All she did was write books after books no explanation of HOW TO FIX THE PATIENT.Also Dr. is playing with spirochetes in blood. it would take me a week to devise the best treatment abx just by observing the blood counts of borrelia after therapy.I can't understand why 70 years and years in general are wasted without some sort of correct treatment strategy. So I basically get frustrated with these people and there literature. Just ranting tony. > What stuned me reading Lida Mattmans book is that > CWD forms - all our common bakterias have CWD forms. its not just borelia or mycoplasma. > > When the bakteria changes from it also changes propertiers like > axb resistence changes > enviromental: Temprature -80 C,NAOH , toxical, > Proteins and anti bodies > When 'recreateded' to original(cellwall) form it can have a different collection of proteins > .... > > I also would say that all forms may be existing at the same time. > > -- > Per Sjöholm > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Tony: Mattman studied the life and times of bacteria. Don't get down on her becuase she didn't take the giant humanitarin step to 'heal' people. She contributed plenty. She contributed the tools to anyone who wanted to pick them up and go one to use them to figure out the best way to fight these microbes....... And the people I see picking up those tools don't seem to know how to use them... therein lies the problem. Barb > > What stuned me reading Lida Mattmans book is that > > CWD forms - all our common bakterias have CWD forms. its not just > borelia or mycoplasma. > > > > When the bakteria changes from it also changes propertiers like > > axb resistence changes > > enviromental: Temprature -80 C,NAOH , toxical, > > Proteins and anti bodies > > When 'recreateded' to original(cellwall) form it can have a > different collection of proteins > > .... > > > > I also would say that all forms may be existing at the same time. > > > > -- > > Per Sjöholm > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Tony, in science different people have different jobs. One person can't do everything. Lida Mattman's interest was in the bacteria themselves, not how to treat illness. Then someone else comes along and, hoping her work was accurate, uses it for other applications. I'm never sure if Lida Mattman's work is accepted across the board or not. It seems that she's mainly cited by alternative people. I'm not sure how well received she is in the infectious field in general. But that doesn't mean her life's work should be dismissed. She's obviously very devoted, or she wouldn't still be at it in her 80s. penny > > What stuned me reading Lida Mattmans book is that > > CWD forms - all our common bakterias have CWD forms. its not just > borelia or mycoplasma. > > > > When the bakteria changes from it also changes propertiers like > > axb resistence changes > > enviromental: Temprature -80 C,NAOH , toxical, > > Proteins and anti bodies > > When 'recreateded' to original(cellwall) form it can have a > different collection of proteins > > .... > > > > I also would say that all forms may be existing at the same time. > > > > -- > > Per Sjöholm > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 Great points all around, Barb. Especially the last one. Too many docs and pseudo researchers interpreting her work as it fits their own agendas, when they don't really have the qualifications to do so. penny " Barb Peck " <egroups1bp@y...> wrote: > Tony: Mattman studied the life and times of bacteria. Don't get down on her becuase she didn't take the giant humanitarin step to 'heal' people. She contributed plenty. She contributed the tools to anyone who wanted to pick them up and go one to use them to figure out the best way to fight these microbes....... > > And the people I see picking up those tools don't seem to know how to use them... therein lies the problem. > > Barb > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 One of my intention with writing about CWD is to get all people to begin to understand that CWD-forms is there and the Microbial Lab people may or may not accept it. If they accept it they don't have on the self tests/tools. They can not answer a remiss from a MD. The tools exist alrigth but nobody cared for making them available to your favorite microbial lab. Lida Mattman books shows a very long list of referenses and the chapters are targeted on diagnoses(Tony, please read the book). Some people on PhD/MD level and above belive that CWD is mycoplasma or C.Penumia What about E.choli and S.aurenus, they also have CWD forms. I also don't belive that throwing cortosteroid on them is a solution. Or use TNF-a antagonnist or whatever on inflammation. This is damage control and no substitute for understanding what is happening. It costs us taxpayer a furtune. /Per Barb Peck wrote: > Tony: > Mattman studied the life and times of bacteria. Don't get down > on her becuase she didn't take the giant humanitarin step to 'heal' > people. She contributed plenty. She contributed the tools to anyone > who wanted to pick them up and go one to use them to figure out the > best way to fight these microbes....... > > And the people I see picking up those tools don't seem to know how > to use them... therein lies the problem. One of the problems, there is a whole bunch of them. > > >>>What stuned me reading Lida Mattmans book is that >>>CWD forms - all our common bakterias have CWD forms. its not just >>borelia or mycoplasma. >>>When the bakteria changes from it also changes propertiers like >>>axb resistence changes >>>enviromental: Temprature -80 C,NAOH , toxical, >>>Proteins and anti bodies >>>When 'recreateded' to original(cellwall) form it can have a >>different collection of proteins >>>.... >>> >>>I also would say that all forms may be existing at the same time. -- Per Sjöholm Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 i also had her as my patron saint. i woke up one day and realised her work gets us knowhere.she's also poopooed by doctors that want to know what you do with a patient.so no treatment no good. tony > > > What stuned me reading Lida Mattmans book is that > > > CWD forms - all our common bakterias have CWD forms. its not just > > borelia or mycoplasma. > > > > > > When the bakteria changes from it also changes propertiers like > > > axb resistence changes > > > enviromental: Temprature -80 C,NAOH , toxical, > > > Proteins and anti bodies > > > When 'recreateded' to original(cellwall) form it can have a > > different collection of proteins > > > .... > > > > > > I also would say that all forms may be existing at the same time. > > > > > > -- > > > Per Sjöholm > > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2005 Report Share Posted May 23, 2005 C'mon, Tony. That's like saying archaeologists shouldn't study ancient civiilizations because it doesn't help me pay my bills. Or you shouldn't study math and engineering before proceeding directly to building bridges. First of all, that's not how science works. It moves slowly, usually one tiny discovery built on another. Lida Mattman may not have discovered the cure, or even a treatment, but she wasn't claiming to work on a cure. She studed bacteria. That was her passion, and she, unlike many researchers was at least concerned enough to try to provide information to those who are working on a cure, in hopes that it might help. At least that's my take on it. There are all kinds of scientists and areas of research, some that people find valuable and exciting, while others that may seem dull, or useless (look at the big fight over stem cell and space research). Some people spend their lives researching the reproductive patterns of fruit bats, probalby for reasons we can't even fathom. It's Dr. Mattman's perogative to study what she wants, and others to use it or not. Perhaps people give her work more weight than it really deserves, or perhaps they don't give it enough, I don't know. But I think you should be more concerned about people trying to sell " miracle cures " , or claim our illness is in our heads, than a little old lady who's fascinated by bacteria and how it works. If you don't like her scientific theories, then tell us how you think she's wrong, but don't blame her for not doing the job you want her to do (finding a cure). The best work comes from people who are passionate about their work, so we need to find more people passionate about finding a cure and support them (and hope they deserve our support). If we want to point fingers, it should be at the injustices and politics in medicine that prevent a cure from being found. Just my 1 cent. penny > > > > What stuned me reading Lida Mattmans book is that > > > > CWD forms - all our common bakterias have CWD forms. its not > just > > > borelia or mycoplasma. > > > > > > > > When the bakteria changes from it also changes propertiers like > > > > axb resistence changes > > > > enviromental: Temprature -80 C,NAOH , toxical, > > > > Proteins and anti bodies > > > > When 'recreateded' to original(cellwall) form it can have a > > > different collection of proteins > > > > .... > > > > > > > > I also would say that all forms may be existing at the same > time. > > > > > > > > -- > > > > Per Sjöholm > > > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Penny My 2 cents worth. The first thing you attempt to accumnulate as an amateur microbiologist is the tools of the trade. Having some 60 different antibiotic testing discs made me feel like a kid under a christmas tree. The second most exciting acquisition is parasitic staining materials. Accumulating stains and looking under the microscope is what ILNESS IS ALL ABOUT. Without these tools go out and get a book of limericks and waffle on about ilness cures and stories. I find it absolutely pointless to talk CWD forms when you haven't even tested for ONE BACTERIA with the simple tool of culture and observation.The reason why this tool remains in the shed is because it's too cheap, doctors are too busy, doctors are too smart and can observe what is causing your infection basically a myriad of excuses. My favourite one is that my doctor doesn't do that? Yet his favourite path lab can't exist without having this function. So I suggest nextime you have a nasty looking ailment get it checked out properly and you'll observe how optimal therapy is not being delivered. Mattman unfortunately falls into a category of making our claims less legitimate by waffling on and not providing a tool for the doctor to use as a probe even.Basically don't lead autoimmune ilnesses down the path of infectious agents and not show someone making an improvement of sorts on an antibacterial agent.It's fraught with danger because it's this waffling that stops the medical proffesion from pursuing this angle and stop them taking on other challenges. > > > > > What stuned me reading Lida Mattmans book is that > > > > > CWD forms - all our common bakterias have CWD forms. its not > > just > > > > borelia or mycoplasma. > > > > > > > > > > When the bakteria changes from it also changes propertiers > like > > > > > axb resistence changes > > > > > enviromental: Temprature -80 C,NAOH , toxical, > > > > > Proteins and anti bodies > > > > > When 'recreateded' to original(cellwall) form it can have a > > > > different collection of proteins > > > > > .... > > > > > > > > > > I also would say that all forms may be existing at the same > > time. > > > > > > > > > > -- > > > > > Per Sjöholm > > > > > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Tony: please show us the godies, your tools of the trade You know what to look for. I'm a novice, show me more information. Where can I bay the stuff(links), what is needed and what does it cost ? /Per dumbaussie2000 wrote: > Penny > My 2 cents worth. The first thing you attempt to accumnulate as an > amateur microbiologist is the tools of the trade. Having some 60 > different antibiotic testing discs made me feel like a kid under a > christmas tree. The second most exciting acquisition is parasitic > staining materials. Accumulating stains and looking under the > microscope is what ILNESS IS ALL ABOUT. Without these tools go out > and get a book of limericks and waffle on about ilness cures and > stories. -- Per Sjöholm Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Per My first challenge as a fibro sufferer was to get myself NOT A DOCTOR a microbiologist.Achieving this and stepping into the world of microbes was what had to happen, I think bird breeders can use parasitic blood technology to keep there flocks healthy. This made me feel I could do as well if not better than the bird breeder's. Per in my honest opinion possably the most overlooked symptom you have even though not evident is the destruction occuring in your sinus exposing your brain to more than anyone would like. tony > > Penny > > My 2 cents worth. The first thing you attempt to accumnulate as an > > amateur microbiologist is the tools of the trade. Having some 60 > > different antibiotic testing discs made me feel like a kid under a > > christmas tree. The second most exciting acquisition is parasitic > > staining materials. Accumulating stains and looking under the > > microscope is what ILNESS IS ALL ABOUT. Without these tools go out > > and get a book of limericks and waffle on about ilness cures and > > stories. > > > -- > Per Sjöholm > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 per I feel on ebay your micrscope store is UNBELIEVABLE as far as pricing goes . A 2000 dollar microscope equivalent sells for 200 dollars and the opticals shouldbe fine. tony > > Penny > > My 2 cents worth. The first thing you attempt to accumnulate as an > > amateur microbiologist is the tools of the trade. Having some 60 > > different antibiotic testing discs made me feel like a kid under a > > christmas tree. The second most exciting acquisition is parasitic > > staining materials. Accumulating stains and looking under the > > microscope is what ILNESS IS ALL ABOUT. Without these tools go out > > and get a book of limericks and waffle on about ilness cures and > > stories. > > > -- > Per Sjöholm > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Tony That or ebay did not answer my question. /Per dumbaussie2000 wrote: > Per > My first challenge as a fibro sufferer was to get myself NOT A > DOCTOR a microbiologist.Achieving this and stepping into the world > of microbes was what had to happen, I think bird breeders can use > parasitic blood technology to keep there flocks healthy. This made > me feel I could do as well if not better than the bird breeder's. > Per in my honest opinion possably the most overlooked symptom you > have even though not evident is the destruction occuring in your > sinus exposing your brain to more than anyone would like. > tony > > > > >>>Penny >>>My 2 cents worth. The first thing you attempt to accumnulate as > an >>>amateur microbiologist is the tools of the trade. Having some 60 >>>different antibiotic testing discs made me feel like a kid under > a >>>christmas tree. The second most exciting acquisition is > parasitic >>>staining materials. Accumulating stains and looking under the >>>microscope is what ILNESS IS ALL ABOUT. Without these tools go > out >>>and get a book of limericks and waffle on about ilness cures and >>>stories. >> >>-- >>Per Sjöholm >>Stockholm, Sweden -- Per Sjöholm Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2005 Report Share Posted May 24, 2005 Per Sorry I didn't answer your question but someone on this list I believe pointed me to the ebay microscope section which I thought was awesome.What did you want me to tell you other than I accumulated 60 different testing discs by buying many thru my lab friend from oxoid. Please ask me again what you want me to answer? I thought it was microbiology and supplies that your question was targeting.Sorry I don't follow the list religiously and don't read the posts meticulously, I think I'm more of a slash and post type. tony > >>>Penny > >>>My 2 cents worth. The first thing you attempt to accumnulate as > > an > >>>amateur microbiologist is the tools of the trade. Having some 60 > >>>different antibiotic testing discs made me feel like a kid under > > a > >>>christmas tree. The second most exciting acquisition is > > parasitic > >>>staining materials. Accumulating stains and looking under the > >>>microscope is what ILNESS IS ALL ABOUT. Without these tools go > > out > >>>and get a book of limericks and waffle on about ilness cures and > >>>stories. > >> > >>-- > >>Per Sjöholm > >>Stockholm, Sweden > > > -- > Per Sjöholm > Stockholm, Sweden Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2005 Report Share Posted October 2, 2005 Barbara, my son Jack who is 11 had cwd surgery in January 05. he recovered from the operation really quickly and has thankfully had no infections. He has seen his doctor 3 times since January & everything looks fine. With the exception of water restrictions he has carried as he did before. He ia a normal, happy boy who enjoys life to the full. I hope this gives you some reassurance. Pat cwd My 4 year old just had a canal wall down done last week, much to my surprise. We expected his 2nd look to go smoothly. Our surgeon planned on going in and making sure all was clear, then grafting his eardrum. Once in there he found the c'toma growing up towards my sons brain and down along his facial nerve....so he did a cwd. The doc says that he will lead a very normal life and can still swim, but with a plug. I feel like he was really giving me the up side of all this because it was such a surprise to all of us, but from what I've read before we can expect lots of infection and drainage from a cwd as well as the ongoing cleanings. I know you are all probably tired of repeating yourselves, but I would appreciate some advice and info from you guys that have some experience with cwd post op and maintenance. I'm sort of freaked out about all this, because I thought when my son had surgery in January we had this whipped, so did our surgeon. He told me how sorry he was to lead us to believe it was all clear, but he reallly thought he had cleaned it out and hadn't seen anything in June during our regular visit. UGH....I feel like we are starting at the beginning all over again.ThanksBarbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2005 Report Share Posted October 2, 2005 Actually the CWD is the best way to insure that the c-toma does not come back. To say draining will never happen again would be wrong but 85% of al cwd's are sucessful in the c-toma never coming back. It's been 26 years since my cwd and the c-toma never has come back. If the cwd is done correctly there is nothing in the middle ear or mastiod for c-toma to cling to and form. I have had 2 or 3 infections over the past 26 years but asntibaotics have cleared them up. You will get a clear fluid draining from the ear for about the next 1 to 2 years but that's the ear's healing process, nothing t0o be alramed about. However, if concerned call your doc. As far as swimming goes my Doc gave me the green light with our ear plugs a year after my cwd.... tom hansen --- Barbara Hatch <rdnckgypc@...> wrote: > My 4 year old just had a canal wall down done last > week, much to my > surprise. We expected his 2nd look to go smoothly. > Our surgeon planned on > going in and making sure all was clear, then > grafting his eardrum. Once in > there he found the c'toma growing up towards my sons > brain and down along > his facial nerve....so he did a cwd. The doc says > that he will lead a very > normal life and can still swim, but with a plug. I > feel like he was really > giving me the up side of all this because it was > such a surprise to all of > us, but from what I've read before we can expect > lots of infection and > drainage from a cwd as well as the ongoing > cleanings. I know you are all > probably tired of repeating yourselves, but I would > appreciate some advice > and info from you guys that have some experience > with cwd post op and > maintenance. I'm sort of freaked out about all this, > because I thought when > my son had surgery in January we had this whipped, > so did our surgeon. He > told me how sorry he was to lead us to believe it > was all clear, but he > reallly thought he had cleaned it out and hadn't > seen anything in June > during our regular visit. UGH....I feel like we are > starting at the > beginning all over again. > Thanks > Barbara > > > __________________________________ - PC Magazine Editors' Choice 2005 http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2005 Report Share Posted October 2, 2005 Tom, Thanks for the info. I sure hope we fall into that 85%! the surgeon said that if this doesn't work the next step would be a radical mastoidectomy, he explained that would clean everything out completely and there would be no way to restore hearing after that was done. Right now, he has left it so there may be a possibilty of doing the prostetic bones later in life by doing a modified radical mastoidectomy. I'm not really sure what the difference is between the modified radical and the plain old radical mastoidectomy. I wonder if the cwd was done " right " this time, or if the right way would've have been to go ahead with the radical? The surgeon said he debated whether or not to go ahead with the radical, but wanted to give my son " the benefit of the doubt " so maybe his hearing could be restored later....I guess time will tell. Thanks Barbara >From: Tom Hansen <pingmn123@...> >Reply-cholesteatoma >cholesteatoma >Subject: Re: cwd >Date: Sun, 2 Oct 2005 11:10:43 -0700 (PDT) > >Actually the CWD is the best way to insure that the >c-toma does not come back. To say draining will never >happen again would be wrong but 85% of al cwd's are >sucessful in the c-toma never coming back. It's been >26 years since my cwd and the c-toma never has come >back. If the cwd is done correctly there is nothing >in the middle ear or mastiod for c-toma to cling to >and form. I have had 2 or 3 infections over the past >26 years but asntibaotics have cleared them up. You >will get a clear fluid draining from the ear for about >the next 1 to 2 years but that's the ear's healing >process, nothing t0o be alramed about. However, if >concerned call your doc. As far as swimming goes my >Doc gave me the green light with our ear plugs a year >after my cwd.... > > >tom hansen > >--- Barbara Hatch <rdnckgypc@...> wrote: > > > My 4 year old just had a canal wall down done last > > week, much to my > > surprise. We expected his 2nd look to go smoothly. > > Our surgeon planned on > > going in and making sure all was clear, then > > grafting his eardrum. Once in > > there he found the c'toma growing up towards my sons > > brain and down along > > his facial nerve....so he did a cwd. The doc says > > that he will lead a very > > normal life and can still swim, but with a plug. I > > feel like he was really > > giving me the up side of all this because it was > > such a surprise to all of > > us, but from what I've read before we can expect > > lots of infection and > > drainage from a cwd as well as the ongoing > > cleanings. I know you are all > > probably tired of repeating yourselves, but I would > > appreciate some advice > > and info from you guys that have some experience > > with cwd post op and > > maintenance. I'm sort of freaked out about all this, > > because I thought when > > my son had surgery in January we had this whipped, > > so did our surgeon. He > > told me how sorry he was to lead us to believe it > > was all clear, but he > > reallly thought he had cleaned it out and hadn't > > seen anything in June > > during our regular visit. UGH....I feel like we are > > starting at the > > beginning all over again. > > Thanks > > Barbara > > > > > > > > > > >__________________________________ > - PC Magazine Editors' Choice 2005 >http://mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 , My second surgery was a modified like yours because of the damage the regrowth did. My surgeon decided it really wasn't worth the trouble to remove the c-toma a second time and hope that it would end there. At the same time he did the CWD, he grafted a new eardrum and replaced the malleus and incus with a titanium prosthesis. I had some clear drainage and occasional sharp pains from the ear to my throat while it healed. It took about 18 months before it completely healed. My hearing in that ear is fair to good. My taste buds did eventually get back to normal. However, some tart things still taste sweet to me, for instance, before the surgery I could not stand the taste of yogurt, now I like it and black coffee always tastes like it has sugar in it. Anyway, it is good to hear (no pun intended) things are going well. Good luck Dave L. <lobolocojo@...> wrote: Hi All, It's been 6 weeks since my 1st and hopefully only cholesteatoma surgery on my right ear. The nasty c-toma destroyed my malleus, incus, and started eroding the bony plate on its way toward my brain (didn't get through though thank god). The surgeon did a CWD procedure and removed my malleus, incus and did grafting on the fascia. Unfortunately the nerve that goes to the right side of my tongue had to be sacrificed, so everything tastes funny. Doc says my brain will relearn to taste though it may take a year. Textures feel funny on that side too. He said the good news is the stapes is fine and is an important link in the hearing chain. He told me that many people actually hear well with just a newly grafted eardrum and a stapes, and if i'm fortunate I won't need another surgery, but if I do that I will be a good candidate for reconstruction with prosthetic earbones (1 or 2 yrs down the road). He said my hearing will never be the same "but you will have useful hearing in that ear." He also told me that I can shower fairly normally, just fold my ear down when I stick my head under the shower, and normal spray that bounces off my shoulders or whatever isn't really a concern. He said soapy water would be really more of a concern. I'm having to put eardrops in my ear every night anyway for 5 minutes and then drain anyway (which makes me dizzy for a few minutes). I'll have to put the drops in every night for the next 4 weeks at least till I see him again. As far as activity goes, he has cleared me to go to the gym and workout (when I have time and enregy). I'm not able to go swimming yet, but he said after 4-6 month I will be able to swim (with earplug). When I asked will I be able to SCUBA dive again, he gave me a look and said "you will be able to do anything on land, you will even be able to swim with a plug, but diving is one of the only sports I see that can damage the eardrum". I asked if there would be a chance my eardrum would rupture and he said yes. I told him how much I love diving, and my wife is a marine biologist, and he said "well I won't rule it out forever, but not for a long while" I probably won't ever risk my ear by diving, but I am heartbroken about it. As far as my recovery is going, I think I'm doing pretty well considering my skull was cracked open for 3 1/2 hrs. I'm a stay at home dad and taking care of my 17month old daughter does take a bit of energy (and in a month my son will be born), and often by the end of the day I feel a bit off. Then the eardrops at the end of the day before sleep make me dizzy for a few minutes. Also, certain head positions like laying flat on my back, or looking down reading for too long, or craning my neck to look behind me, and quick movements make me a bit dizzy. I can't wait for that to go away, as being dizzy has been the worst part of this whole thing. My neck is still a little stiff on that side but it's gettting better. Am I rambling? Anyway, just wanted to give my experience on this CWD. for GoodClick here to donate to the Hurricane Katrina relief effort. for Good Click here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2005 Report Share Posted October 3, 2005 dizziness is probably the worst problem that has come with my ctoma surgery. i had the surgery over two mos ago and still have episodes (thats what i call them because they dont seem to last more than a half hour). dont know when or if they will ever stop, but i had quit driving, and have to be careful where i walk for fear that it will come on. hasnt made me physically sick yet, tho i have felt pretty queasy........... other than that, some pain, but the drainage has finally stopped thank god. best of luck to all Re: cwd Hi All, It's been 6 weeks since my 1st and hopefully only cholesteatoma surgery on my right ear. The nasty c-toma destroyed my malleus, incus, and started eroding the bony plate on its way toward my brain (didn't get through though thank god). The surgeon did a CWD procedure and removed my malleus, incus and did grafting on the fascia. Unfortunately the nerve that goes to the right side of my tongue had to be sacrificed, so everything tastes funny. Doc says my brain will relearn to taste though it may take a year. Textures feel funny on that side too. He said the good news is the stapes is fine and is an important link in the hearing chain. He told me that many people actually hear well with just a newly grafted eardrum and a stapes, and if i'm fortunate I won't need another surgery, but if I do that I will be a good candidate for reconstruction with prosthetic earbones (1 or 2 yrs down the road). He said my hearing will never be the same "but you will have useful hearing in that ear." He also told me that I can shower fairly normally, just fold my ear down when I stick my head under the shower, and normal spray that bounces off my shoulders or whatever isn't really a concern. He said soapy water would be really more of a concern. I'm having to put eardrops in my ear every night anyway for 5 minutes and then drain anyway (which makes me dizzy for a few minutes). I'll have to put the drops in every night for the next 4 weeks at least till I see him again. As far as activity goes, he has cleared me to go to the gym and workout (when I have time and enregy). I'm not able to go swimming yet, but he said after 4-6 month I will be able to swim (with earplug). When I asked will I be able to SCUBA dive again, he gave me a look and said "you will be able to do anything on land, you will even be able to swim with a plug, but diving is one of the only sports I see that can damage the eardrum". I asked if there would be a chance my eardrum would rupture and he said yes. I told him how much I love diving, and my wife is a marine biologist, and he said "well I won't rule it out forever, but not for a long while" I probably won't ever risk my ear by diving, but I am heartbroken about it. As far as my recovery is going, I think I'm doing pretty well considering my skull was cracked open for 3 1/2 hrs. I'm a stay at home dad and taking care of my 17month old daughter does take a bit of energy (and in a month my son will be born), and often by the end of the day I feel a bit off. Then the eardrops at the end of the day before sleep make me dizzy for a few minutes. Also, certain head positions like laying flat on my back, or looking down reading for too long, or craning my neck to look behind me, and quick movements make me a bit dizzy. I can't wait for that to go away, as being dizzy has been the worst part of this whole thing. My neck is still a little stiff on that side but it's gettting better. Am I rambling? Anyway, just wanted to give my experience on this CWD. for GoodClick here to donate to the Hurricane Katrina relief effort. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2005 Report Share Posted October 4, 2005 Barbara, Sorry to hear about your son. My son who is now 20 had his first c- toma removal operation at 15--a canal wall up. We knew there was a chance the c-toma would come back but wanted to try to spare his hearing if at all possible since he is a musician. The c-toma had eaten into the canal wall and the cranial wall so doc grafted cartlidges patches to protect his brain and " shore up " his canal wall. At the second look surgery 15 months later sure enough the c- toma had come back. It had eaten his ear bones so they were removed at that time and doc said the patch over his brain looked good but the one on the canal wall was " iffy " . That surgery was also a cwu to try to preserve his hearing. A year later he had surgery to implant prosthetic earbones and restore the hearing in that ear. But when doc got in there the canal wall crumbled and had to be removed. So after all that he ended up with a cwd anyway. His last surgery was January of 2005. In october of 2005 he developed an infection in the bowl we thought because he got water in his ear. I don't know now if that's what happened. We fought for a year with the naval hospital and the new ent they had there (not the one who had done his surgeries). This new guy thought it was no big deal so his head stayed infected for a year. We finally got him sent back to his orginial doctor and it took him another 4 months to get of the infection. He said by then it was resistent to the antibiotics they had given him and we had to try a bunch of new anitbiotics. There were problems with that too. We finally got him over the infection and a month later found out that his prosthetic implants had dislodged and his body was rejecting them. I wonder now if the infection was part of the rejection. Doesn't matter at this point. He's over it and has decided implants aren't worth it. He'll just learn to deal with the severe hearing loss. You know, everyone is different and all doctors are different. It sounds like your doctor is the optimistic type much like ours. It's good to have hope. We're hoping the day will come when my son only has to go to get the bowl cleaned out twice a year. That may not happened as some people have to go more often. Everyone has to learn what works for them. My son will live a perfectly good life and is still pursuing a career in music. He doesn't swim very often. We have an inground pool and he went in it once this summer--by himself and with plugs. I All you can do is stay proactive when it comes to his ear. Don't wait if something doesn't seem right-see the doctor asap. Get second opinions if you're not comfortable with the doctor is saying. wish your son all the best and hope that he has as much luck as Pat's son. > Barbara, > my son Jack who is 11 had cwd surgery in January 05. he recovered from the operation really quickly and has thankfully had no infections. He has seen his doctor 3 times since January & everything looks fine. With the exception of water restrictions he has carried as he did before. He ia a normal, happy boy who enjoys life to the full. I hope this gives you some reassurance. > > Pat > cwd > > > My 4 year old just had a canal wall down done last week, much to my > surprise. We expected his 2nd look to go smoothly. Our surgeon planned on > going in and making sure all was clear, then grafting his eardrum. Once in > there he found the c'toma growing up towards my sons brain and down along > his facial nerve....so he did a cwd. The doc says that he will lead a very > normal life and can still swim, but with a plug. I feel like he was really > giving me the up side of all this because it was such a surprise to all of > us, but from what I've read before we can expect lots of infection and > drainage from a cwd as well as the ongoing cleanings. I know you are all > probably tired of repeating yourselves, but I would appreciate some advice > and info from you guys that have some experience with cwd post op and > maintenance. I'm sort of freaked out about all this, because I thought when > my son had surgery in January we had this whipped, so did our surgeon. He > told me how sorry he was to lead us to believe it was all clear, but he > reallly thought he had cleaned it out and hadn't seen anything in June > during our regular visit. UGH....I feel like we are starting at the > beginning all over again. > Thanks > Barbara > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2005 Report Share Posted October 6, 2005 hey guys, i wanted to mention that when my boyfriend went to see the second ent (a VA doc) he also said that they are getting away from the 'bowl procedure' which is what my bf had done...i am guessing that this must have been cwd. i do not know what they are doing instead, but that is what that particular ent said....hopefully they are finding something better for the future. >From: " cathy " <cathym.bscpa@...> >Reply-cholesteatoma >cholesteatoma >Subject: Re: cwd >Date: Tue, 04 Oct 2005 17:53:39 -0000 > >Barbara, >Sorry to hear about your son. My son who is now 20 had his first c- >toma removal operation at 15--a canal wall up. We knew there was a >chance the c-toma would come back but wanted to try to spare his >hearing if at all possible since he is a musician. The c-toma had >eaten into the canal wall and the cranial wall so doc grafted >cartlidges patches to protect his brain and " shore up " his canal >wall. At the second look surgery 15 months later sure enough the c- >toma had come back. It had eaten his ear bones so they were removed >at that time and doc said the patch over his brain looked good but >the one on the canal wall was " iffy " . That surgery was also a cwu to >try to preserve his hearing. A year later he had surgery to implant >prosthetic earbones and restore the hearing in that ear. But when >doc got in there the canal wall crumbled and had to be removed. So >after all that he ended up with a cwd anyway. His last surgery was >January of 2005. In october of 2005 he developed an infection in the >bowl we thought because he got water in his ear. I don't know now if >that's what happened. We fought for a year with the naval hospital >and the new ent they had there (not the one who had done his >surgeries). This new guy thought it was no big deal so his head >stayed infected for a year. We finally got him sent back to his >orginial doctor and it took him another 4 months to get of the >infection. He said by then it was resistent to the antibiotics they >had given him and we had to try a bunch of new anitbiotics. There >were problems with that too. We finally got him over the infection >and a month later found out that his prosthetic implants had >dislodged and his body was rejecting them. I wonder now if the >infection was part of the rejection. Doesn't matter at this point. >He's over it and has decided implants aren't worth it. He'll just >learn to deal with the severe hearing loss. >You know, everyone is different and all doctors are different. It >sounds like your doctor is the optimistic type much like ours. It's >good to have hope. >We're hoping the day will come when my son only has to go to get the >bowl cleaned out twice a year. That may not happened as some people >have to go more often. Everyone has to learn what works for them. >My son will live a perfectly good life and is still pursuing a career >in music. He doesn't swim very often. We have an inground pool and >he went in it once this summer--by himself and with plugs. >I All you can do is stay proactive when it comes to his ear. Don't >wait if something doesn't seem right-see the doctor asap. Get second >opinions if you're not comfortable with the doctor is saying. > wish your son all the best and hope that he has as much luck as >Pat's son. > > > > > Barbara, > > my son Jack who is 11 had cwd surgery in January 05. he recovered >from the operation really quickly and has thankfully had no >infections. He has seen his doctor 3 times since January & everything >looks fine. With the exception of water restrictions he has carried >as he did before. He ia a normal, happy boy who enjoys life to the >full. I hope this gives you some reassurance. > > > > Pat > > cwd > > > > > > My 4 year old just had a canal wall down done last week, much to >my > > surprise. We expected his 2nd look to go smoothly. Our surgeon >planned on > > going in and making sure all was clear, then grafting his >eardrum. Once in > > there he found the c'toma growing up towards my sons brain and >down along > > his facial nerve....so he did a cwd. The doc says that he will >lead a very > > normal life and can still swim, but with a plug. I feel like he >was really > > giving me the up side of all this because it was such a surprise >to all of > > us, but from what I've read before we can expect lots of >infection and > > drainage from a cwd as well as the ongoing cleanings. I know you >are all > > probably tired of repeating yourselves, but I would appreciate >some advice > > and info from you guys that have some experience with cwd post op >and > > maintenance. I'm sort of freaked out about all this, because I >thought when > > my son had surgery in January we had this whipped, so did our >surgeon. He > > told me how sorry he was to lead us to believe it was all clear, >but he > > reallly thought he had cleaned it out and hadn't seen anything in >June > > during our regular visit. UGH....I feel like we are starting at >the > > beginning all over again. > > Thanks > > Barbara > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Does anyone has recurrance after just 1 year from the CWD surgery? Does anyone has the eardrum be placed inward nearer to the 3 middle ear-bones to minimize recurrance of ctoma? Will this work? Hi there, I had my 1st CWD surgery in Sep last year. Unfortunately it has returned again in my last Sep check up, just one year after the CWD operation. So Soon? Does anyone has CWD & recurrance in judt one year's time? My doctor suggests that she will now shift my ear-drum inward, leaving bigger ear channel space to minimize the recurrance of the c-toma again. Does anyone has this type of surgery? Please share your experience with me. I have many doubts. If the c-toma is due to malfunction of the eustachian tube, will the shifting of the ear-drum inward into the middle ear reduce the ctoma recurrance chance? Also I have no other symptoms, no discharge, lost of hearing etc... But CT scan shows soft tissues filled up some air-space in the middle ear, my doctor can't be 100 percent sure that it is the recurrance of ctoma. Could it be just some inner swelling infection? I am very fearful of the surgery, wish to delay it as long as I could. My doctor agreed to my request of delaying the surgery till Feb next year. On the other hand, I am also fearful that the ctoma is eroding my hearing bones day after day. Caught in between, so... stressful. Having some pain at the ear channel recently, no sure is infection or not, but there is no discharge at all. Feeling lost...Irene Send instant messages to your online friends http://asia.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Irene Does anyone has recurrance after just 1 year from the CWD surgery? I think it was about six weeks for me, though it was an unusual case. Does anyone has the eardrum be placed inward nearer to the 3 middle ear-bones to minimize recurrance of ctoma? Will this work? Not sure how that would work. The outer most ear bone already has to make contact with the eardrum in order for it function. In the one reconstruction I had the doctor used a half sized eardrum made from a piece of muscle - the rest of the space being filled in with cartilage. The reason being that half an eardrum functions well enough and is less susceptible to perforation or being sucked in. Though the bones in my case are actually a titanium Torp. Does anyone know what is cochlear? the same as BAHA? Better than BAHA ? They may look similar from the outside but a Cochlear Implant would be used in cases of profound sensorineural (nerve) deafness. I think it passes a wire directly to auditory nerve. People with ctoma suffer mostly from conductive deafness, meaning the middle parts that transmit sound are damaged rather than the inner ear. Baha enhances the capacity of the skull itself to transmit sound. It would be applicable mostly to conductive deafness - you need a reasonable degree of sensorineural hearing for it to work. I hope that's right. I No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.1.409 / Virus Database: 268.15.18/584 - Release Date: 12/12/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2006 Report Share Posted December 13, 2006 Phil, Thanks very much for the explaination. Have a nice day. Irene Phil <psmorris@...> wrote: Irene Does anyone has recurrance after just 1 year from the CWD surgery? I think it was about six weeks for me, though it was an unusual case. Does anyone has the eardrum be placed inward nearer to the 3 middle ear-bones to minimize recurrance of ctoma? Will this work? Not sure how that would work. The outer most ear bone already has to make contact with the eardrum in order for it function. In the one reconstruction I had the doctor used a half sized eardrum made from a piece of muscle - the rest of the space being filled in with cartilage. The reason being that half an eardrum functions well enough and is less susceptible to perforation or being sucked in. Though the bones in my case are actually a titanium Torp. Does anyone know what is cochlear? the same as BAHA? Better than BAHA ? They may look similar from the outside but a Cochlear Implant would be used in cases of profound sensorineural (nerve) deafness. I think it passes a wire directly to auditory nerve. People with ctoma suffer mostly from conductive deafness, meaning the middle parts that transmit sound are damaged rather than the inner ear. Baha enhances the capacity of the skull itself to transmit sound. It would be applicable mostly to conductive deafness - you need a reasonable degree of sensorineural hearing for it to work. I hope that's right. I No virus found in this outgoing message.Checked by AVG Free Edition.Version: 7.1.409 / Virus Database: 268.15.18/584 - Release Date: 12/12/06 Real people. Real questions. Real answers. Share what you know. Quote Link to comment Share on other sites More sharing options...
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