Guest guest Posted July 29, 2000 Report Share Posted July 29, 2000 hi patrick! i just wanted to tell you, you may have had the cfs longer than you think . . . i've been sick since 1980 - i actually saw a shrink off & on from 1981 till i was dx'd in '89. the first thing this illness may screw with is your head. i was told i was just a " little depressed " , a little " bi-polar " , maybe a " little ADD " (3 different shrinks/MDs), and i was tried on every anti-depressant known to mankind at the time. i reacted badly to all of them, because i was taking way too much..... and i did two yrs on extremely low dose dexedrine. course, it all seems pretty funny now..... my 18yr old " charge " , " s " , was taken the psych route for a couple yrs in high school. she was actually dx'd schizo at one time. thank god her dad knew she wasn't " mental " , and wouldn't let them put her in a psych ward....... my daughter's school tried to send her the psych route, and so did one of docs i took her to. naturally, i had to give them a piece of my mind, before i finally got her into my dr and dx'd :-) so, fwiw, i don't believe you were ever a case of depression/anxiety/whatever :-) i think it was the cfs causing your " mild IBS " , etc, all along. ~~~~~~~~~~~~~~~~~~~~~~~~~ " Would they have found nothing, unless nothing was what they wanted to find? " - Agent Dales, X-Files @}{~{<<~~~~~~~~~~~~~~~~~~~~ @}{~{<<~~~~~~~~~~~~~~~~~~~~ debbie s. - dlsherman@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 I believe Ken is right. Americans are innovators, they for the most part, do not lay down and accept any authority lightly... goes way back to the Boston Tea Party. .. when even very enlightened " men " had a hankering to change things around them. American Medicine though, is much like the rest of the world, most of our doctors are highly over-educated individuals who are very much afraid of standing out, taking a stance -- that is not blessed by their collegues. But....there are those researchers and doctors with the pioneer spirit who do not take no for an answer, will not have their research swept under the rug, and stand for what they believe and have seen --- they take actions that put them outside their circle and lead them to be ridiculed by their peers until their peers actually re-prove their theories and those theories become part of the mainstream. That's the circle. And that's life. No matter what we do or see in this world... as all marketing experts will tell you... there will always be innovators, main-streams, and laggards. That's personality and character. And NO ONE on this list is a main-streamer or a laggard... and no one on this list is of medium intelligence. That's why something will continue to happen here. Just hold on, use your wonderful brain-fogged intelligence and persevere. We do make a difference, everyday that we get out of bed. Every time we make a contact, follow a lead, test a theory, we advance toward our common goal of wellness. Someone's got to do it.. and right now since no one else has volunteered, and we can handle the ridicule -- even when it hurts -- this work is left to us... we are the evolved innovators of this movement. Ruth In a message dated 7/30/2000 9:50:48 AM Central Daylight Time, KenL@... writes: > Actually, I think the why is slightly different (Speaking as a fellow member > of the Commonwealth that immigrated to the US some 12 years ago).. it is the > American attitude to authority: distrust, plus the self-reliant /cockyness of > the pioneer. > > Simple example: many CFIDS patients here wishing to try antibiotics meet > the same stone wall from MDs that you have in Australia. These people either > MD hunt OR 'go on a mini-war of Independence, complete with guerilla actions!' > - example: buying antibiotics from vet-supply outfit(no prescription needed) > and self-prescribing. In Canada or Australia, such an action would be > breaching the social/medical contract totally! - in the US, they are just > pushing things a little... > In Australia and Canada - there is a general trust / belief that the > establishment is benevolent... in the US, there is a mild general paranoria > about establishments, corporations and beaurocratice entitites... > - and this means that even some MDs in the US distrust 'convention' and > willing to be far more experimental than the same ones in Canada or Australia > -- after all, in the US - the patients pick and largely fund the MDs (direct > or indirect) - some MDs choose not to deal with certain insurance companies > because they are simply pains... Now in Canada, Australia and the UK - you > have National Health (or equivalent government plan) and if you violate their > rules of 'corporate policies' too much.... you are now unemployed/ > unemployable - unless you immigrate elsewhere... > > So yes - US doctors are one factor for some, but I suspect that it is the US > patient that is also a factor... > > - I know that if I had not adopted many AMERICAN attitudes, that the course > of interaction with my MD would have been totally different and I would not > be gearing up to resume my prior life.... in short, some national cultures > tend to do exactly what the MD order - others tend to take this as a > suggestion and add in 101 other sources of suggestions - coming up with their > own 'prescription'.... there are exceptions in each country also... > > M Lassesen, M.S. > ex " Dr.Gui (MSDN) " , " Dr. VB " > cv: http://www.folkarts.com/kenl/ KenL@... > Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 > ----- Original Message ----- > From: Riley > Not gonna give you the don't give up speech but FWIW I think you have a > fighting > chance of finding a reasonable treatment in America.So many people on this > list seem to find something that works.I think it's due to the American > trait > of having more.More specialists/doctors,more research,more networking.In > this > situation more can be good. > > > All the best Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Actually, I think the why is slightly different (Speaking as a fellow member of the Commonwealth that immigrated to the US some 12 years ago).. it is the American attitude to authority: distrust, plus the self-reliant /cockyness of the pioneer. Simple example: many CFIDS patients here wishing to try antibiotics meet the same stone wall from MDs that you have in Australia. These people either MD hunt OR 'go on a mini-war of Independence, complete with guerilla actions!' - example: buying antibiotics from vet-supply outfit(no prescription needed) and self-prescribing. In Canada or Australia, such an action would be breaching the social/medical contract totally! - in the US, they are just pushing things a little... In Australia and Canada - there is a general trust / belief that the establishment is benevolent... in the US, there is a mild general paranoria about establishments, corporations and beaurocratice entitites... - and this means that even some MDs in the US distrust 'convention' and willing to be far more experimental than the same ones in Canada or Australia -- after all, in the US - the patients pick and largely fund the MDs (direct or indirect) - some MDs choose not to deal with certain insurance companies because they are simply pains... Now in Canada, Australia and the UK - you have National Health (or equivalent government plan) and if you violate their rules of 'corporate policies' too much.... you are now unemployed/unemployable - unless you immigrate elsewhere... So yes - US doctors are one factor for some, but I suspect that it is the US patient that is also a factor... - I know that if I had not adopted many AMERICAN attitudes, that the course of interaction with my MD would have been totally different and I would not be gearing up to resume my prior life.... in short, some national cultures tend to do exactly what the MD order - others tend to take this as a suggestion and add in 101 other sources of suggestions - coming up with their own 'prescription'.... there are exceptions in each country also... M Lassesen, M.S. ex " Dr.Gui (MSDN) " , " Dr. VB " cv: http://www.folkarts.com/kenl/ KenL@... Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 ----- Original Message ----- From: Riley Not gonna give you the don't give up speech but FWIW I think you have a fighting chance of finding a reasonable treatment in America.So many people on this list seem to find something that works.I think it's due to the American trait of having more.More specialists/doctors,more research,more networking.In this situation more can be good. All the best Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Hi kind people, I think I realized one of the reasons why I am feeling so moody and weird lately. On Thursday my shrink asked me to increase my Celexa (an SSRI like Prozac) from 20mgs to 30 mgs. I've done it for the last three nights. I'm pretty sure today that is making me feel moody AND it is increasing my brainfog to the point of near paralysis. I mean I can barely read today, and trying to follow a television show is improssible. I did something very stupid that proves the necessity to try one thing at a time. At the same time I decreased my Doxepin. I was taking about 10-20mgs a night for the last several months. I just started taking less than 5mgs. I'm not sure which is causing my increased brain fog, the increased Celexa or the decreased Doxepin, but I'm pretty sure that one of them is. Do you guys think so? I tend to be pretty sensitive to med chagnes - even before CFS I was like that. Guess what, tonight I am going back to my prior dosages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2000 Report Share Posted July 30, 2000 Everybody who has CFS should get a book on rotation diet and stick to a vigorous rotation for several weeks and see how it goes. Its cheap, its not easy to do but it can have very significant effects - more so than you would think. In some ways, because it is so inexpensive and yet so often a factor in CFS (see Cheney) it should be one ofthe first things done. Food allergies can cripple you. You can find books on the internet. The ENvironmental Health Center of Dallas sells one. They have a web site. >From: Riley <runwild@...> >Reply-egroups >egroups >Subject: this sucks >Date: Sun, 30 Jul 2000 19:52:40 +1000 > > > > >Hi ,I can really sympathise with you. >I spent $6,000 Australian dollars on ONE particular doctor.All I got was a >box full >of vitamins.No prizes for guessing which one of us is feeling better. > >Not gonna give you the don't give up speech but FWIW I think you have a >fighting >chance of finding a reasonable treatment in America.So many people on this >list seem to find something that works.I think it's due to the American >trait >of having more.More specialists/doctors,more research,more networking.In >this >situation more can be good. > >One American doctor after visiting DOWN UNDER described it as a CFS >wasteland. >I wouldn't go that far.As much as I love OZ,do feel we are lagging >behind,probably >with the rest of the world. >Even though we have some hard working doctors our government gives not one >cent >to research. > >Guess there is always something positive to say about our situation. >Australia,at least where I live is a great place to be sick in. > >I always thought the reason I knew I had contracted a serious illness and >not insanity was because I HAD previously experienced anxiety and >depression. >At one point in my life I dug myself out of a depressive episode with >exercise.I decided to run for my life,my equilibrium.It helped immensely. >I was melancholy,sad,hurt,lost,empty but I was not SICK. > >Don't fall for the idea that this illness is similar to depression.It can >make you >depressed and make you feel crazy but it's not the same not even close. > >All the best > > > >well nothing I'm doing thus far really seems to be helping me. Acyclovir, > >ImmunoPro, Co-Q10, Carnitor, vitamins, pancreatic digestive enzymes, >Celexa, > >Klonopin, Doxepin, B-12 shots. > > > >Its all so confusing, keeping it all straight and buying it. I wanted to >try > >an elimination diet (sigh, ANOTHER one) but dont know where to begin and >get > >overwhelmed. Is there just some simple powdered drink I could mix for 10 >days > >to give my digestive system a break and see if symptoms clear up? > > > >All these meds and supplements that are costing me tons of cash, and >really > >I'm noticing nothing. I've only been taking the ImmunoPro for about three > >weeks or so (I cut down from 2 scoops to one scoop to save money). > > > >I lie awake at night, worrying that I'm not addressing the right issues. > >Worrying that there is something going on that if discovered would easily > >lead to the end of my suffering. Worrying about medical expenses to come > >should I travel down *another* unproven road of potential help. I have >spent > >upwards of, get this, SIX THOUSAND DOLLARS - much of which I still owe, >TONS > >OF TRAVELING, MAJOR TIME OFF FROM WORK, HUGE STRESS IN PLANNING, AND OVER >ONE > >YEAR to travel to my " top dog " CFS specialist for testing. After all >that, > >being given a dx of hhv6 in spinal fluid, IgA deficiency, Low weight >RNase L > >(but not high levels of it), and carnitine deficiency has led to nothing. >No > >one knows what to do with these dx's, not even the doctor who has dxed >me. > >There isnt even enough hard evidence to prove that these things are >anything > >other than meaningless red-herrings that might be there even if I felt >fine, > >they tell me. Mind you, this was after spending two years exhausting my >local > >HMO for help. > > > >Maybe I really am just crazy? I did have an anxiety and depression >problem > >before this CFS stuff settled in 3.5 years ago. But I was pretty damn >healthy > >nonetheless, except for allergies, mild IBS, and more than normal colds. > > > >Maybe my psychological quirks have turned themselves inside out, >penetrating > >my brain and creating physical symptoms where no real organic cause >exists. > >Maybe a few years of intensive therapy will clear it up. Oh gee, another > >twenty thousand dollars! > > > >Maybe I have a slow onset of MS or Cancer or autoimmune disease, and its >just > >taking a while before it will actually show up on a lab test. > > > >I'm struggling just to keep afloat working fulltime, paying bills, >keeping >up > >basic daily needs / errands. Never mind having fun, or enjoying myself. I > >look at my 31 year old body, that used to be so lean and toned and in >shape > >and I see flab and zero muscle tone. My most vital youthful days are >passing > >me by. Most other 31 year old males living in cool cities like mine are >out > >partying, having fun, or raising families. ANything but languishing away >in a > >world of " go to work, feel shitty all day, come home, feel shittier, get > >depressed. > > > >If anyone has a spare rock they can offer me, I'd love to crawl under it >and > >never come out. > > > >Sorry for the rant. I know many people feel the same way. Not being >healthy > >is truly such a nightmare. There are so many things I want to do with my > >life, and now I can barely even manage a relatively simple full time job >that > >is actually quite beneath my ever shrinking skills due to lose of use. > > > >I cant eve get my hands around any of it because the brain fog just puts >me > >in another world. I'm going to bed now. its the weekend. Maybe I'll stay >in > >bed all weekend and never get up again. > > > >Sorry again. I'm not looking for sympathy, just venting. > > > > > ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 sounds very reasonable to me, patrick! let us know!! <<< I'm not sure which is causing my increased brain fog, the increased Celexa or the decreased Doxepin, but I'm pretty sure that one of them is. Do you guys think so? I tend to be pretty sensitive to med chagnes - even before CFS I was like that. Guess what, tonight I am going back to my prior dosages! >>> ~~~~~~~~~~~~~~~~~~~~~~~~~ " Would they have found nothing, unless nothing was what they wanted to find? " - Agent Dales, X-Files @}{~{<<~~~~~~~~~~~~~~~~~~~~ @}{~{<<~~~~~~~~~~~~~~~~~~~~ debbie s. - dlsherman@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 31, 2000 Report Share Posted July 31, 2000 on 7/30/00 10:44 AM, Ken Lassesen at KenL@... wrote: Hi ken, In an exceedingly rare spell of quazi-nationalistic pride, I shall take issue with your comments about America vs. Canada re: medicine, etc. 8D > Simple example: many CFIDS patients here wishing to try antibiotics meet the > same stone wall from MDs that you have in Australia. These people either MD > hunt OR 'go on a mini-war of Independence, complete with guerilla actions!' - > example: buying antibiotics from vet-supply outfit(no prescription needed) and > self-prescribing. In Canada or Australia, such an action would be breaching > the social/medical contract totally! - in the US, they are just pushing things > a little... I don't this accurately depicts Canada. For example, when I was looking for a source of cyanocobalamine that was stronger than 1000 mcg/ml, my pharmacist actually did me the favour of ordering a veterinary supply (for horses) at 5000 mcg/ml. I know that's slightly different than what you were saying, but still... In many ways, I think it's a lot easier to gain access to just about whatever you want in Canada. For one, doctors are covered by the provincial medical insurance--most of them--unless they " opt out " of the provincial plan, which they can do. Since nearly all doctors are essentially 'free', it becomes a 'buyer's market'; i.e., if I go to a doctor and I don't like him, I go to another one--at no extra charge. In this manner, one can shop around for a doctor at no personal expense. Doctors are aware of this freedom we, as medical consumers, have and thus they tend to be fairly agreable to just about anything (in my experience), so that you'll keep coming back, instead of moving on. Also, doctors here are under much less pressure, in terms of having their prescribing practices mandated from regulatory bodies. Doctors in Canada do not worry about having their licences jeapordized by prescribing large doses of narcotics. Also, our compounding pharmacies seem to enjoy a relative freedom from intervention that is surprising. E.g., I wanted to get a Rx for a ketamine nasal spray, which has to be compounded. In America, ketamine has been scheduled rather strictly, I believe, and doctors seem to be aware of its role as a 'drug of abuse'. Here, I called the compounding pharmacy, told them that I wanted a ketamine nasal spray at 50mg/ml in normal saline, 30 ml...how much would it cost? They called me back within the hour and gave me a price (40 bucks). Then I went and visited my pain doctor (anesthesiologist) and told him about the ketamine nasal spray a la Goldstein. On nothing but my word, he wrote out a Rx for the ketamine nasal spray, put 3 repeats on it and handed it over--not even bothering to check the strength, etc. all he said was 'keep me posted about this; it's new territory for me'. On future occasions he's said " how are the sniffies going? " ! In general, I've found (to my initial surprise) that doctors will generall go along with ANYTHING I request, as long as i make a sensible case for whatever it may be. Thus, getting an Rx for hydroxycobalamine was as simple as handing my doc a copy of one of Cheney's protocols. With oxygen it was the same. I think that Canadian doctors are definitely less well acquainted with the 'cutting edge', in terms of new treatments, etc. which ARE most definitely originating in USA (usually from UCLA). Thus Canadian doctors seem to be well aware of their own lack of awareness in this regard. Thus, they actually rely a lot on patients to keep them informed about what is new and promising. They are indeed less cavalier then their american counterparts, but also more laissez-faire, and less strictly regulated, which allows patients to be more cavalier, ultimately. > In Australia and Canada - there is a general trust / belief that the > establishment is benevolent... in the US, there is a mild general paranoria > about establishments, corporations and beaurocratice entitites.. I don't think this is true. I'd say that the majority of the population believes the establishment to be benevolent in all 3 countries. The difference is the way the political systems are structured, so that it is easier in america to challenge the establishment. America is a republic, while Canada and Australia are monarchies. Thus, we lack the political channels to make our challenge to the establishment as effective and well known. .. > - and this means that even some MDs in the US distrust 'convention' and > willing to be far more experimental than the same ones in Canada or Australia > -- after all, in the US - the patients pick and largely fund the MDs (direct > or indirect) - some MDs choose not to deal with certain insurance companies > because they are simply pains... Now in Canada, Australia and the UK - you > have National Health (or equivalent government plan) and if you violate their > rules of 'corporate policies' too much.... you are now unemployed/unemployable > - unless you immigrate elsewhere... > But Canadian doctors have the option of simply 'opting out' of the provincial health insurance. Many/most specialists do just that, which means that you'll have to pay out of your pocket, unless you have private insurance -- just like in America. Problem is, that is turns out to be more lucrative for a candian specialist to simply head to AMerica, rather than opt out of the provincial health insurance and try to make a living this way. The provincial insurance places a 'cap' on how much a specialist can charge. As Canadians, we are definitely suffering from the loss of specialists... no doubt about that. <quazi-nationalistic pride off> 8^D Hud Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2000 Report Share Posted August 1, 2000 Difference of opinions are always welcomed! Especially when it comes from someone on a chesterfield eating poutine with a cup of Tim Horton's I seem to recall that you are in the Big Smoke? M Lassesen, M.S. ----- Original Message ----- From: Hud Ramelan Hi ken, In an exceedingly rare spell of quazi-nationalistic pride, I shall take issue with your comments about America vs. Canada re: medicine, etc. 8D > Simple example: many CFIDS patients here wishing to try antibiotics meet the > same stone wall from MDs that you have in Australia. These people either MD > hunt OR 'go on a mini-war of Independence, complete with guerilla actions!' - > example: buying antibiotics from vet-supply outfit(no prescription needed) and > self-prescribing. In Canada or Australia, such an action would be breaching > the social/medical contract totally! - in the US, they are just pushing things > a little... I don't this accurately depicts Canada. For example, when I was looking for a source of cyanocobalamine that was stronger than 1000 mcg/ml, my pharmacist actually did me the favour of ordering a veterinary supply (for horses) at 5000 mcg/ml. I know that's slightly different than what you were saying, but still... In many ways, I think it's a lot easier to gain access to just about whatever you want in Canada. For one, doctors are covered by the provincial medical insurance--most of them--unless they " opt out " of the provincial plan, which they can do. Since nearly all doctors are essentially 'free', it becomes a 'buyer's market'; i.e., if I go to a doctor and I don't like him, I go to another one--at no extra charge. In this manner, one can shop around for a doctor at no personal expense. Doctors are aware of this freedom we, as medical consumers, have and thus they tend to be fairly agreable to just about anything (in my experience), so that you'll keep coming back, instead of moving on. Also, doctors here are under much less pressure, in terms of having their prescribing practices mandated from regulatory bodies. Doctors in Canada do not worry about having their licences jeapordized by prescribing large doses of narcotics. Also, our compounding pharmacies seem to enjoy a relative freedom from intervention that is surprising. E.g., I wanted to get a Rx for a ketamine nasal spray, which has to be compounded. In America, ketamine has been scheduled rather strictly, I believe, and doctors seem to be aware of its role as a 'drug of abuse'. Here, I called the compounding pharmacy, told them that I wanted a ketamine nasal spray at 50mg/ml in normal saline, 30 ml...how much would it cost? They called me back within the hour and gave me a price (40 bucks). Then I went and visited my pain doctor (anesthesiologist) and told him about the ketamine nasal spray a la Goldstein. On nothing but my word, he wrote out a Rx for the ketamine nasal spray, put 3 repeats on it and handed it over--not even bothering to check the strength, etc. all he said was 'keep me posted about this; it's new territory for me'. On future occasions he's said " how are the sniffies going? " ! In general, I've found (to my initial surprise) that doctors will generall go along with ANYTHING I request, as long as i make a sensible case for whatever it may be. Thus, getting an Rx for hydroxycobalamine was as simple as handing my doc a copy of one of Cheney's protocols. With oxygen it was the same. I think that Canadian doctors are definitely less well acquainted with the 'cutting edge', in terms of new treatments, etc. which ARE most definitely originating in USA (usually from UCLA). Thus Canadian doctors seem to be well aware of their own lack of awareness in this regard. Thus, they actually rely a lot on patients to keep them informed about what is new and promising. They are indeed less cavalier then their american counterparts, but also more laissez-faire, and less strictly regulated, which allows patients to be more cavalier, ultimately. > In Australia and Canada - there is a general trust / belief that the > establishment is benevolent... in the US, there is a mild general paranoria > about establishments, corporations and beaurocratice entitites.. I don't think this is true. I'd say that the majority of the population believes the establishment to be benevolent in all 3 countries. The difference is the way the political systems are structured, so that it is easier in america to challenge the establishment. America is a republic, while Canada and Australia are monarchies. Thus, we lack the political channels to make our challenge to the establishment as effective and well known. .. > - and this means that even some MDs in the US distrust 'convention' and > willing to be far more experimental than the same ones in Canada or Australia > -- after all, in the US - the patients pick and largely fund the MDs (direct > or indirect) - some MDs choose not to deal with certain insurance companies > because they are simply pains... Now in Canada, Australia and the UK - you > have National Health (or equivalent government plan) and if you violate their > rules of 'corporate policies' too much.... you are now unemployed/unemployable > - unless you immigrate elsewhere... > But Canadian doctors have the option of simply 'opting out' of the provincial health insurance. Many/most specialists do just that, which means that you'll have to pay out of your pocket, unless you have private insurance -- just like in America. Problem is, that is turns out to be more lucrative for a candian specialist to simply head to AMerica, rather than opt out of the provincial health insurance and try to make a living this way. The provincial insurance places a 'cap' on how much a specialist can charge. As Canadians, we are definitely suffering from the loss of specialists... no doubt about that. <quazi-nationalistic pride off> 8^D Hud This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2000 Report Share Posted August 3, 2000 on 8/1/00 2:33 AM, Ken Lassesen at KenL@... wrote: > Difference of opinions are always welcomed! Especially when it comes from > someone on a chesterfield eating poutine with a cup of Tim Horton's > > I seem to recall that you are in the Big Smoke? If you take Big Smoke to be Greater Toronto Area (or just Southern Ontario) then YES, alas. That does it! That's the last time I'm going to video conference with you. From now on my webcam stays off when Ken wants to have a session. 8>O Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2002 Report Share Posted December 2, 2002 For people like that, I keep a Springfield Armory .45 1911 with 230 grain rounds in the house. A shotgun works just as well though. They come up to the door and hear the " shuck shuck " of a shotgun loading and they'll think twice about whether they want to try anything. It's a shame that most places in this country teach that it is a crime to defend yourself. Alan > 3 years ago,a mechanic wrecked the motor in my car and tried to > charge me for fixing it.I had to pay another $400.00 even after I got > it back to get it fixed right , altogether I was out over $700.00 and > he wanted another $500.00. > I told him no. > He took me to court,I would not have sued him for the money I was > out , but since he started it, and tried to bully me into paying I > counter-sued and won . > > I just got a call from the Sherrif. He refused to pay the money the > court ordered him to , so the Sherrif has been trying to collect > it .The guy worked for himself so they have to follow him around and > find out where he is working . > People have lied about what and when they pay him cause I think they > are scared not too . > Today the sherrif tried again and this guy made some nasty threats . > > Nasty enough for the sherrif to call me ,and also my mother cause she > lives closer to this guy,and alert both police departments to be on > the look out for him . > > I would love to know how I attract so much crap. > I'm being sued for " dog Barking " by the crazy old bat next door ,and > now this . > The police are going to be making extra runs by my place.Maybe they > will notice my dogs are not out barking. ugh .They already know my > dogs are not left out barking because every other neighbor has given > statements.17 in all. But I still have to go to court feb 13th . > > Times like this is when it sucks being alone .I am concerned , > because the police are concerned enough to be looking for this > guy ,but I think if I was not on Lex I would be nuts by now . > Sorry this is so long but just needed to vent . > Hugs > Lesli Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2002 Report Share Posted December 3, 2002 Wow lesli....Hopefully this guy that threatened you will back off.At least the police are aware of his threats. But it must be very nerve wracking! I remember years ago when my husband had to fire a man from his job and we recieved threatening letters in the mail.Not only threatening my husband but myself.We called the police too and my husband's co had a detective on it,but they never ended up arresting him.....cause there wasn't enough proof it was him and he left town too. SOOO.Lucky nothing ever came of that. Anyhow good luck...... nobody needs this added stress in their lives! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 - my heart goes out to you ! When you are stuck with a system with no other options then it is doubly frustrating. Does the other surgeon have the experience and is it possible and worth exploring ? I certainly would try and find out if there are other options open to you. It sounds so trite to say hang in there this too will pass but honest it will ! You will get there. Meanwhile we will keep you in our thoughts and prayers. BIG hugs, Joan This sucks Hi everybody Well, last night was a horrible evening. Had dinner as usual, and had to meet up with a new client about 2o minutes away. I needed my dh to pull over twice on the way home to gurge some ground hamburger on the side of the highway. Yuck. So, we get to Tim Hortons and have a seat. Well, within an hour and a half, I was in the bathroom at least 7 or 8 times, just bringing up the last mouthful of my drink. This means (in my body anywaya!) that there is more dinner sitting at the bottom of my E. Finally, (sorry for the details) the last one I had there, I could taste the hamburger again…. Eww.. that was enough to make me gag… and bring a bunch up. This was a sign, it was time to go. Went home, and the gurging continued. Coughing/choking most of the night… not fun at all. This morning, dinner was finally squeezed through with the help of breakfast, oatmeal, pushing it through. So, I get to work, and decide I am going to call the surgeon, and see where I stand. On June 3, I was told a month to two months, and it would be my turn. Yeah, apparently not. I called, and the receptionist told me “, I told you we would call when we have a date” Thanks a lot. I told her things are progressively getting worse. I reminded her that I was told a month to two months, which would bring me to Aug 3 latest. She laughed, and said that he (the surgeon) is going on holidays, and won’t be back until mid –August. Nice. At that point he only gets a week a month in the OR, and they didn’t know where I wouldd fit in. She also told me they are still catching up with patients who were bumped due to the health care strike back in April! (I think April) Yeah Canada. So, still no date, and who knows when. I am so frusterated. Here I am at work, upset at my desk, and no one here understands. I am so done with this. I think I will call my GI and see if there is another Thoracic surgeon north of here, instead of just sending me to Vancouver like they do for most things. I need help. This sucks. I am so stuck on what to do. I am not as brave as some of you and think I will go nuts if I have to live off broth for any period of time. Chilliwack, BC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 In a message dated 7/21/2004 1:06:22 PM Eastern Daylight Time, ableasdale@... writes: I am so done with this. I think I will call my GI and see if there is another Thoracic surgeon north of here, instead of just sending me to Vancouver like they do for most things. I need help. This sucks. I am so stuck on what to do. I am not as brave as some of you and think I will go nuts if I have to live off broth for any period of time. Chilliwack, BC Oh , I am so sorry to hear that your condition is worsening. Life must really suck like it is for you now. Can you do what you said above and call to see if they can reccomend a surgeon north of you?? I say don't give up, keep bugging them until you have some one else to see! Keep calling, it's not easy, especially while you're trying to work and live your life, but just keep calling untill you get a better solution than just wait. Hope things get better. Hugs, Jan in Northern KY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , I've always had trouble with ground meat. Before the surgery I knew I would pay for eating ground meat. I'm too scared to try it even after surgery. I'm on solids now but learning that I'm not fixed and so will need to take things slow. I'm getting used to the idea that I may never be fixed completely. I'm still feeling overwhelmed that I actually have a weird disease that took a year to find a name to the symptoms. It's so depressing to eat now. I have good and bad eating days and my mood is often determined by what type of day it is. It's so frustrating not knowing much about the cause or a solution to dealing with this. Hang in there. I know this is a truly horrid way to live at times but there are so many other positive things in life. I keep a picture of my crazy cats leaping off the top of the stairs at my desk at home. On bad days I just take out my camera and take pictures of the cats. Take up a hobby and keep your mind off food. It's taken me a while. I'm trying to not let my life revolve around food and whether or not it's stuck. It's a daily struggle. I hope your surgery gets scheduled soon. Keep smiling. Lisbeth Philadelphia, PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hi Joan Thanks for your reply. I called my GI, and my luck, there office is closed until August 3rd. So, in two weeks I will call again, and see if my GI thinks maybe I will have better luck there. I think I was automatically referred to Vancouver due to location, but I am willing to drive further if I can have this dealt with. I remember back in January when this all began, my GI told I should be all “better” by the time summer kicks around. Now, I think summer is going to go on without me. Our vacations are put on hold, as well as we can’t wait to start a family… but of course not until this is dealt with and I get my nutrition back on track… M & M’s aren’t the best thing to live on!…. I am eating them pretty much for dinner now! Chilliwack, BC Re: This sucks - my heart goes out to you ! When you are stuck with a system with no other options then it is doubly frustrating. Does the other surgeon have the experience and is it possible and worth exploring ? I certainly would try and find out if there are other options open to you. It sounds so trite to say hang in there this too will pass but honest it will ! You will get there. Meanwhile we will keep you in our thoughts and prayers. BIG hugs, Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hi - so sorry to hear of your problems yesterday. My heart goes out to you. I am very disappointed in the receptionist at Dr. Finleys office. She is new this past year and replaced a wonderful thoughtful girl that was so understanding and helpful when I was waiting for my surgery. To be honest with you I really made a pest of myself ( in a nice way - because she was nice too ) and called almost every week to see where I stood. But apparently this one is not receptive to that. I can understand your frustration, but I would honestly hate to see you try someone else. He is so experienced, people have come from other Provinces to have him do the surgery. I am hoping you can "hang in there" because believe it or not it will be all worth it in the end. By the time I had my surgery I was living on Ensure - not the nicest thing to eat ( drink )but it sustained me till I got the call. I think of you often, and will look forward to seeing you post - "I'm scheduled for surgery" real soon.......... Take care and all the best. , Vancouver BC. This sucks Hi everybody Well, last night was a horrible evening. Had dinner as usual, and had to meet up with a new client about 2o minutes away. I needed my dh to pull over twice on the way home to gurge some ground hamburger on the side of the highway. Yuck. So, we get to Tim Hortons and have a seat. Well, within an hour and a half, I was in the bathroom at least 7 or 8 times, just bringing up the last mouthful of my drink. This means (in my body anywaya!) that there is more dinner sitting at the bottom of my E. Finally, (sorry for the details) the last one I had there, I could taste the hamburger again…. Eww.. that was enough to make me gag… and bring a bunch up. This was a sign, it was time to go. Went home, and the gurging continued. Coughing/choking most of the night… not fun at all. This morning, dinner was finally squeezed through with the help of breakfast, oatmeal, pushing it through. So, I get to work, and decide I am going to call the surgeon, and see where I stand. On June 3, I was told a month to two months, and it would be my turn. Yeah, apparently not. I called, and the receptionist told me “, I told you we would call when we have a date” Thanks a lot. I told her things are progressively getting worse. I reminded her that I was told a month to two months, which would bring me to Aug 3 latest. She laughed, and said that he (the surgeon) is going on holidays, and won’t be back until mid –August. Nice. At that point he only gets a week a month in the OR, and they didn’t know where I wouldd fit in. She also told me they are still catching up with patients who were bumped due to the health care strike back in April! (I think April) Yeah Canada. So, still no date, and who knows when. I am so frusterated. Here I am at work, upset at my desk, and no one here understands. I am so done with this. I think I will call my GI and see if there is another Thoracic surgeon north of here, instead of just sending me to Vancouver like they do for most things. I need help. This sucks. I am so stuck on what to do. I am not as brave as some of you and think I will go nuts if I have to live off broth for any period of time. Chilliwack, BC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Oh your story (the part describing your evening) sounds so much like the stage in this I am at right now. I haven't even got to the part where I talk to them about scheduling surgery yet but hopefully I won't have to go through as many hoops as you are having to. I can only imagine how disheartening it must be to be treated that way. I would just want to cry. Hang in there and we will be praying for you! (I'll be praying that it won't take so long for me to get in too) ;-) in Seattle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 , , etc....Public vomiting is gross, embarrassing and scary. I look forward to the day when you guys can report that you are eating & it is staying where it should! Cindi ____________________________________________________ IncrediMail - Email has finally evolved - Click Here Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hi everyone Thanks Joan, Lisbeth, and for your words of encouragement. I really appreciate your help. I have had about enough of this. It is bearable most days, but days like yesterday, I just want to go to bed, and keep sleeping, so I don’t have the difficulties of A. Oh, wait – Then I would still get the choking, etc. ARHGH. It never ends! I guess there is not much more to do, except wait. I am just fed up, as I am sure we all are… Until the Big M (myotomy). I can’t wait. I am soooo excited for it. Very odd, but I want it to happen tomorrow. I don’t think it would be so bad if they hadn’t told me a month or two. I had my heart set on 2 months, max. I keep getting my hopes up for nothing. You think I would’ve learned by now! I guess the wait continues! Thanks again guys, I appreciate your input! Chilliwack, BC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2010 Report Share Posted August 7, 2010 This all happened so fast. 3 weeks ago I was a normal 42 year old guy who went to the doc over a sinus infection. Now, I am recovering from the removal of a golf ball sized cholesteatoma. I read quite a bit prior to the operation on the site. I must say I have experienced some serious pain in my life before. Ruptured tendons, broken bones, some bad burns, herniated disks and even had got my thumb chopped off and sewed back on again. Well, this pain tops them all. I just cant figure it out. Most folks I hear comments from suggest a little Tylenol and you will never no anything happened. Maybe I am all screwed up but man am I in pain. It is very frustrating but it sure sounds like the cholesteatoma experience has only just begun. from what I read from others posts. I have severe to profound hearing loss in my left ear. I have always got by on my good right ear. I thought about getting a hearing aid one day but was always putting it off due to the cost and the fact that my right ear was pretty darn good. Well, one day about three weeks ago I went to my primary physician. I thought I had a sinus infection or even some allergies. My ears were a bit plugged up and I thought that a hay-fever shot would fix me right up. When the doc told me he wanted a ct scan of my head I knew something was up. I really new something was up when he got me the ct appointment 10 minutes later in the same day and then had me referred to neuro surgeon the next morning. Normally it would take me a month to get visited by a specialist. Ha. Anyhow, the day the neuro saw me he wanted to operate on the right ear the next day. I told him to hold his horses and that this was going a little to fast for me. He told me he saw a 5cm mass on my ct scan affecting my good right ear and that if i was not having side effects, i would be soon. In fact, he wondered just how I could hear anything at all out of my right ear. Well we scheduled surgery about 10 days out. In that time my face began to go numb on the right side and I started getting migraines from hell. The worst part is that within a couple of days I lost all hearing in my " good " right ear. So hear I sat with profound hearing loss in one in and near profound in the other. I have a new found respect for the deaf. Hearing loss is tough to deal with. The doctor told me that it took 6 hrs. to get it all out. At least all that he could see. He is going back in my ear at 6 months. Sounds pretty standard. He says I will most likely loose a good portion of my hearing because an incredible amount of damage had been done but he just can't say until he starts to rebuild. I know this is all pretty common. What I didn't expect was the amount of pain I am experiencing after surgery. The right side of my head is swollen up. It feels like someone has a pencil shoved into my ear to about mid brain and has to poke it around for kicks every 20 minutes or so just to get my mind of the non stop industrial style ringing in my ears. I am also very nauseated pretty much 24-7. Yea, lucky me I got the entire gamut of side effects. My food tastes like it was forged at the Alcoa aluminum factory on the swing shift. I am scared to keep it in my mouth to long or it may oxidize on me. (Nothing like a rusty bowl of soup.) My smile is crooked now too. It does make me look cool with a cigar in my mouth though, in sort of a gangster kind of way. Between the pain scowl, nasty taste in my mouth and my permanent crooked smile I could pass for a Philly mob wise guy. It has been 4 nights now. It is bound to improve. As bad as it is it is not my worst complaint. Here is my worst complaint. My family is supportive but they just don't understand. You see, my frustration level and my wife and kids is escalating like never before. Simply because I cant understand what they are saying most the time now. It gets very old to ask folks to please repeat. In fact, it gets down right embarrassing after awhile. By the same token, they are literally leaving me out of conversations, decisions and just about anything verbal because of their frustration in having to repeat things over and over again to me. It is to the point that I am avoiding my whole family due to the communication issues and the frustration level. They are doing the same thing. It is very hard on a marriage. It is depressing. I find myself pretending I am asleep to avoid uncomfortable situations. I see my little girl entering then leaving a room upon finding I am sitting in the room. When they do talk to me, it seems like they have begun having just a little " attitude " and shrinking patients with my hearing. When I misunderstand them and ask what they said I get " never mind " more often than not now days. I have a hearing aid coming in a couple of weeks. I am sure it will help but in some ways, the damage has been done. Don't get me wrong, it is not enough of a problem to cause divorce or anything (yet) but I sure see that my spouse treats me different than she used to. I hurts a bit. I see my kids doing it too. It hurts from them even more. I am sure that I am overcompensating for this defect as well. I have found myself trying to " impose " my will or purposely trying to shake things up to get their attention for no other reason than I feel so left out anymore. I am not posting this for sympathy or tons of advice but rather so that someone else in this position or with a family member in this position might benefit from some insight from a person who has gone pretty much deaf in a month. It is just odd. One month ago, I never had thoughts one way or another regarding communication. I rather thought it was good in my house. Now, the whole communication thing is a daily struggle that I dread horribly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2010 Report Share Posted August 8, 2010 On Sat, Aug 7, 2010 at 9:43 PM, dogbonz66 <dogbonz66@...> wrote: This all happened so fast. 3 weeks ago I was a normal 42 year old guy who went to the doc over a sinus infection. Now, I am recovering from the removal of a golf ball sized cholesteatoma. I read quite a bit prior to the operation on the site. I must say I have experienced some serious pain in my life before. Ruptured tendons, broken bones, some bad burns, herniated disks and even had got my thumb chopped off and sewed back on again. Well, this pain tops them all. I just cant figure it out. Most folks I hear comments from suggest a little Tylenol and you will never no anything happened. Maybe I am all screwed up but man am I in pain. It is very frustrating but it sure sounds like the cholesteatoma experience has only just begun. from what I read from others posts. I have severe to profound hearing loss in my left ear. I have always got by on my good right ear. I thought about getting a hearing aid one day but was always putting it off due to the cost and the fact that my right ear was pretty darn good. Well, one day about three weeks ago I went to my primary physician. I thought I had a sinus infection or even some allergies. My ears were a bit plugged up and I thought that a hay-fever shot would fix me right up. When the doc told me he wanted a ct scan of my head I knew something was up. I really new something was up when he got me the ct appointment 10 minutes later in the same day and then had me referred to neuro surgeon the next morning. Normally it would take me a month to get visited by a specialist. Ha. Anyhow, the day the neuro saw me he wanted to operate on the right ear the next day. I told him to hold his horses and that this was going a little to fast for me. He told me he saw a 5cm mass on my ct scan affecting my good right ear and that if i was not having side effects, i would be soon. In fact, he wondered just how I could hear anything at all out of my right ear. Well we scheduled surgery about 10 days out. In that time my face began to go numb on the right side and I started getting migraines from hell. The worst part is that within a couple of days I lost all hearing in my " good " right ear. So hear I sat with profound hearing loss in one in and near profound in the other. I have a new found respect for the deaf. Hearing loss is tough to deal with. The doctor told me that it took 6 hrs. to get it all out. At least all that he could see. He is going back in my ear at 6 months. Sounds pretty standard. He says I will most likely loose a good portion of my hearing because an incredible amount of damage had been done but he just can't say until he starts to rebuild. I know this is all pretty common. What I didn't expect was the amount of pain I am experiencing after surgery. The right side of my head is swollen up. It feels like someone has a pencil shoved into my ear to about mid brain and has to poke it around for kicks every 20 minutes or so just to get my mind of the non stop industrial style ringing in my ears. I am also very nauseated pretty much 24-7. Yea, lucky me I got the entire gamut of side effects. My food tastes like it was forged at the Alcoa aluminum factory on the swing shift. I am scared to keep it in my mouth to long or it may oxidize on me. (Nothing like a rusty bowl of soup.) My smile is crooked now too. It does make me look cool with a cigar in my mouth though, in sort of a gangster kind of way. Between the pain scowl, nasty taste in my mouth and my permanent crooked smile I could pass for a Philly mob wise guy. It has been 4 nights now. It is bound to improve. As bad as it is it is not my worst complaint. Here is my worst complaint. My family is supportive but they just don't understand. You see, my frustration level and my wife and kids is escalating like never before. Simply because I cant understand what they are saying most the time now. It gets very old to ask folks to please repeat. In fact, it gets down right embarrassing after awhile. By the same token, they are literally leaving me out of conversations, decisions and just about anything verbal because of their frustration in having to repeat things over and over again to me. It is to the point that I am avoiding my whole family due to the communication issues and the frustration level. They are doing the same thing. It is very hard on a marriage. It is depressing. I find myself pretending I am asleep to avoid uncomfortable situations. I see my little girl entering then leaving a room upon finding I am sitting in the room. When they do talk to me, it seems like they have begun having just a little " attitude " and shrinking patients with my hearing. When I misunderstand them and ask what they said I get " never mind " more often than not now days. I have a hearing aid coming in a couple of weeks. I am sure it will help but in some ways, the damage has been done. Don't get me wrong, it is not enough of a problem to cause divorce or anything (yet) but I sure see that my spouse treats me different than she used to. I hurts a bit. I see my kids doing it too. It hurts from them even more. I am sure that I am overcompensating for this defect as well. I have found myself trying to " impose " my will or purposely trying to shake things up to get their attention for no other reason than I feel so left out anymore. I am not posting this for sympathy or tons of advice but rather so that someone else in this position or with a family member in this position might benefit from some insight from a person who has gone pretty much deaf in a month. It is just odd. One month ago, I never had thoughts one way or another regarding communication. I rather thought it was good in my house. Now, the whole communication thing is a daily struggle that I s personal experiences with this disease., That is so unfair to you. Can you tell them how you feel? They could at least write to communicate. Encourage them to face you directly, and not to cover their lips when they talk. Also, when they want to talk to you, they must approach you, and when you want to speak to them, go to them. I think it's time to be more assertive about your needs. Would they go away and leave you if you couldn't walk? Your sense of humor is terrific, and I think it is a major benefit to getting through this. Maybe some family therapy is in order?My best to you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2010 Report Share Posted August 8, 2010 I forwarded your email to my husband because he has had a difficult time with what you are going through. I know he feels others don't understand what he is going through but I never thought he felt that way about his immediate family. I felt I've been very supportive but apparently not as much as I should have. He has been seeing a therapist for about one month to help him cope with all that he has gone through. I just wanted you to know that you aren't alone with this and you helped me open my eyes to be more aware for my husband. Maybe you should let your family read your post! Good luck! From: dogbonz66 <dogbonz66@...>cholesteatoma Sent: Sat, August 7, 2010 11:43:48 PMSubject: this sucks This all happened so fast. 3 weeks ago I was a normal 42 year old guy who went to the doc over a sinus infection. Now, I am recovering from the removal of a golf ball sized cholesteatoma. I read quite a bit prior to the operation on the site. I must say I have experienced some serious pain in my life before. Ruptured tendons, broken bones, some bad burns, herniated disks and even had got my thumb chopped off and sewed back on again. Well, this pain tops them all. I just cant figure it out. Most folks I hear comments from suggest a little Tylenol and you will never no anything happened. Maybe I am all screwed up but man am I in pain.It is very frustrating but it sure sounds like the cholesteatoma experience has only just begun. from what I read from others posts. I have severe to profound hearing loss in my left ear. I have always got by on my good right ear. I thought about getting a hearing aid one day but was always putting it off due to the cost and the fact that my right ear was pretty darn good. Well, one day about three weeks ago I went to my primary physician. I thought I had a sinus infection or even some allergies. My ears were a bit plugged up and I thought that a hay-fever shot would fix me right up. When the doc told me he wanted a ct scan of my head I knew something was up. I really new something was up when he got me the ct appointment 10 minutes later in the same day and then had me referred to neuro surgeon the next morning. Normally it would take me a month to get visited by a specialist. Ha. Anyhow, the day the neuro saw me he wanted to operate on the right ear the next day. I told him to hold his horses and that this was going a little to fast for me. He told me he saw a 5cm mass on my ct scan affecting my good right ear and that if i was not having side effects, i would be soon. In fact, he wondered just how I could hear anything at all out of my right ear.Well we scheduled surgery about 10 days out. In that time my face began to go numb on the right side and I started getting migraines from hell. The worst part is that within a couple of days I lost all hearing in my "good" right ear. So hear I sat with profound hearing loss in one in and near profound in the other. I have a new found respect for the deaf. Hearing loss is tough to deal with. The doctor told me that it took 6 hrs. to get it all out. At least all that he could see. He is going back in my ear at 6 months. Sounds pretty standard. He says I will most likely loose a good portion of my hearing because an incredible amount of damage had been done but he just can't say until he starts to rebuild. I know this is all pretty common. What I didn't expect was the amount of pain I am experiencing after surgery. The right side of my head is swollen up. It feels like someone has a pencil shoved into my ear to about mid brain and has to poke it around for kicks every 20 minutes or so just to get my mind of the non stop industrial style ringing in my ears. I am also very nauseated pretty much 24-7. Yea, lucky me I got the entire gamut of side effects. My food tastes like it was forged at the Alcoa aluminum factory on the swing shift. I am scared to keep it in my mouth to long or it may oxidize on me. (Nothing like a rusty bowl of soup.) My smile is crooked now too. It does make me look cool with a cigar in my mouth though, in sort of a gangster kind of way. Between the pain scowl, nasty taste in my mouth and my permanent crooked smile I could pass for a Philly mob wise guy. It has been 4 nights now. It is bound to improve. As bad as it is it is not my worst complaint.Here is my worst complaint. My family is supportive but they just don't understand. You see, my frustration level and my wife and kids is escalating like never before. Simply because I cant understand what they are saying most the time now. It gets very old to ask folks to please repeat. In fact, it gets down right embarrassing after awhile. By the same token, they are literally leaving me out of conversations, decisions and just about anything verbal because of their frustration in having to repeat things over and over again to me. It is to the point that I am avoiding my whole family due to the communication issues and the frustration level. They are doing the same thing. It is very hard on a marriage. It is depressing. I find myself pretending I am asleep to avoid uncomfortable situations. I see my little girl entering then leaving a room upon finding I am sitting in the room. When they do talk to me, it seems like they have begun having just a little "attitude" and shrinking patients with my hearing. When I misunderstand them and ask what they said I get "never mind" more often than not now days. I have a hearing aid coming in a couple of weeks. I am sure it will help but in some ways, the damage has been done. Don't get me wrong, it is not enough of a problem to cause divorce or anything (yet) but I sure see that my spouse treats me different than she used to. I hurts a bit. I see my kids doing it too. It hurts from them even more. I am sure that I am overcompensating for this defect as well. I have found myself trying to "impose" my will or purposely trying to shake things up to get their attention for no other reason than I feel so left out anymore. I am not posting this for sympathy or tons of advice but rather so that someone else in this position or with a family member in this position might benefit from some insight from a person who has gone pretty much deaf in a month. It is just odd. One month ago, I never had thoughts one way or another regarding communication. I rather thought it was good in my house. Now, the whole communication thing is a daily struggle that I dread horribly. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2010 Report Share Posted August 8, 2010 Well, I certainly hope your pain subsides soon. If it doesn't I guess there might be an infection that needs to be dealt with. If it's been four days since your surgery, you're probably due to see him again in about a week. From the nausea that you're describing, you may be making the same mistake that I made. Are you drinking enough water? They usually tell you to drink a lot of water, but then never tell you how much. Try 8 ounces for every hour you're awake. You'll be bound to get over the queasy feeling pretty soon if you're simply dehydrated. For some reason it's pretty easy to get dehydrated after this surgery. Having difficulty with hearing can be such a challenge. For me the change was kind of gradual and then I had surgery where I got an artificial hearing bone immediately (instead of six months later). So, for me my hearing wound up improving a little. It was still pretty bad though. Maybe these guidelines can help a little: http://www.chchearing.org/sites/default/files/Tips_for_Communicating_with_Someon\ e_with_Hearing_Loss.pdf Give the water a shot and let us know if you feel any better. I think you'll be amazed. Oh, and yes, cholesteatoma does suck! :-) Matt dogbonz66 wrote: > > This all happened so fast. 3 weeks ago I was a normal 42 year old guy > who went to the doc over a sinus infection. Now, I am recovering from > the removal of a golf ball sized cholesteatoma. > > I read quite a bit prior to the operation on the site. I must say I > have experienced some serious pain in my life before. Ruptured > tendons, broken bones, some bad burns, herniated disks and even had > got my thumb chopped off and sewed back on again. Well, this pain tops > them all. I just cant figure it out. Most folks I hear comments from > suggest a little Tylenol and you will never no anything happened. > Maybe I am all screwed up but man am I in pain. > > It is very frustrating but it sure sounds like the cholesteatoma > experience has only just begun. from what I read from others posts. > > I have severe to profound hearing loss in my left ear. I have always > got by on my good right ear. I thought about getting a hearing aid one > day but was always putting it off due to the cost and the fact that my > right ear was pretty darn good. Well, one day about three weeks ago I > went to my primary physician. I thought I had a sinus infection or > even some allergies. My ears were a bit plugged up and I thought that > a hay-fever shot would fix me right up. When the doc told me he wanted > a ct scan of my head I knew something was up. I really new something > was up when he got me the ct appointment 10 minutes later in the same > day and then had me referred to neuro surgeon the next morning. > Normally it would take me a month to get visited by a specialist. Ha. > Anyhow, the day the neuro saw me he wanted to operate on the right ear > the next day. I told him to hold his horses and that this was going a > little to fast for me. He told me he saw a 5cm mass on my ct scan > affecting my good right ear and that if i was not having side effects, > i would be soon. In fact, he wondered just how I could hear anything > at all out of my right ear. > > Well we scheduled surgery about 10 days out. In that time my face > began to go numb on the right side and I started getting migraines > from hell. The worst part is that within a couple of days I lost all > hearing in my " good " right ear. So hear I sat with profound hearing > loss in one in and near profound in the other. I have a new found > respect for the deaf. Hearing loss is tough to deal with. > > The doctor told me that it took 6 hrs. to get it all out. At least all > that he could see. He is going back in my ear at 6 months. Sounds > pretty standard. He says I will most likely loose a good portion of my > hearing because an incredible amount of damage had been done but he > just can't say until he starts to rebuild. > > I know this is all pretty common. What I didn't expect was the amount > of pain I am experiencing after surgery. The right side of my head is > swollen up. It feels like someone has a pencil shoved into my ear to > about mid brain and has to poke it around for kicks every 20 minutes > or so just to get my mind of the non stop industrial style ringing in > my ears. I am also very nauseated pretty much 24-7. Yea, lucky me I > got the entire gamut of side effects. My food tastes like it was > forged at the Alcoa aluminum factory on the swing shift. I am scared > to keep it in my mouth to long or it may oxidize on me. (Nothing like > a rusty bowl of soup.) My smile is crooked now too. It does make me > look cool with a cigar in my mouth though, in sort of a gangster kind > of way. Between the pain scowl, nasty taste in my mouth and my > permanent crooked smile I could pass for a Philly mob wise guy. It has > been 4 nights now. It is bound to improve. As bad as it is it is not > my worst complaint. > > Here is my worst complaint. My family is supportive but they just > don't understand. You see, my frustration level and my wife and kids > is escalating like never before. Simply because I cant understand what > they are saying most the time now. It gets very old to ask folks to > please repeat. In fact, it gets down right embarrassing after awhile. > By the same token, they are literally leaving me out of conversations, > decisions and just about anything verbal because of their frustration > in having to repeat things over and over again to me. It is to the > point that I am avoiding my whole family due to the communication > issues and the frustration level. They are doing the same thing. It is > very hard on a marriage. It is depressing. I find myself pretending I > am asleep to avoid uncomfortable situations. I see my little girl > entering then leaving a room upon finding I am sitting in the room. > When they do talk to me, it seems like they have begun having just a > little " attitude " and shrinking patients with my hearing. When I > misunderstand them and ask what they said I get " never mind " more > often than not now days. > > I have a hearing aid coming in a couple of weeks. I am sure it will > help but in some ways, the damage has been done. Don't get me wrong, > it is not enough of a problem to cause divorce or anything (yet) but I > sure see that my spouse treats me different than she used to. I hurts > a bit. I see my kids doing it too. It hurts from them even more. I am > sure that I am overcompensating for this defect as well. I have found > myself trying to " impose " my will or purposely trying to shake things > up to get their attention for no other reason than I feel so left out > anymore. > > I am not posting this for sympathy or tons of advice but rather so > that someone else in this position or with a family member in this > position might benefit from some insight from a person who has gone > pretty much deaf in a month. > > It is just odd. One month ago, I never had thoughts one way or another > regarding communication. I rather thought it was good in my house. > Now, the whole communication thing is a daily struggle that I dread > horribly. > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2010 Report Share Posted August 9, 2010 I had a lot of pain after my surgery too. I had major abdominal surgery 2 month before and that was a walk in the park compared to the ear surgery. I took Norco for about ten day after; the downside of the pain meds is they can a make you nauseous. I also have the horrible taste in my mouth. It's been 2 1/2 years since my surgery, it been an uphill battle. It took about 1 year before my hearing got better (My implant was put in during my first surgery). I have had infections on and off, I never gone longer than 2 month without seeing my surgeon (He is very aware that I'm getting frustrated with the process). I'm now allergic to Ciprodex, and in the last six months I've developed ringing and dizziness. The best advice I can offer is take it one day at a time. This is a great group of people to get advice from. Stay strong. Kathy > > This all happened so fast. 3 weeks ago I was a normal 42 year old guy who went to the doc over a sinus infection. Now, I am recovering from the removal of a golf ball sized cholesteatoma. > > I read quite a bit prior to the operation on the site. I must say I have experienced some serious pain in my life before. Ruptured tendons, broken bones, some bad burns, herniated disks and even had got my thumb chopped off and sewed back on again. Well, this pain tops them all. I just cant figure it out. Most folks I hear comments from suggest a little Tylenol and you will never no anything happened. Maybe I am all screwed up but man am I in pain. > > It is very frustrating but it sure sounds like the cholesteatoma experience has only just begun. from what I read from others posts. > > I have severe to profound hearing loss in my left ear. I have always got by on my good right ear. I thought about getting a hearing aid one day but was always putting it off due to the cost and the fact that my right ear was pretty darn good. Well, one day about three weeks ago I went to my primary physician. I thought I had a sinus infection or even some allergies. My ears were a bit plugged up and I thought that a hay-fever shot would fix me right up. When the doc told me he wanted a ct scan of my head I knew something was up. I really new something was up when he got me the ct appointment 10 minutes later in the same day and then had me referred to neuro surgeon the next morning. Normally it would take me a month to get visited by a specialist. Ha. Anyhow, the day the neuro saw me he wanted to operate on the right ear the next day. I told him to hold his horses and that this was going a little to fast for me. He told me he saw a 5cm mass on my ct scan affecting my good right ear and that if i was not having side effects, i would be soon. In fact, he wondered just how I could hear anything at all out of my right ear. > > Well we scheduled surgery about 10 days out. In that time my face began to go numb on the right side and I started getting migraines from hell. The worst part is that within a couple of days I lost all hearing in my " good " right ear. So hear I sat with profound hearing loss in one in and near profound in the other. I have a new found respect for the deaf. Hearing loss is tough to deal with. > > The doctor told me that it took 6 hrs. to get it all out. At least all that he could see. He is going back in my ear at 6 months. Sounds pretty standard. He says I will most likely loose a good portion of my hearing because an incredible amount of damage had been done but he just can't say until he starts to rebuild. > > I know this is all pretty common. What I didn't expect was the amount of pain I am experiencing after surgery. The right side of my head is swollen up. It feels like someone has a pencil shoved into my ear to about mid brain and has to poke it around for kicks every 20 minutes or so just to get my mind of the non stop industrial style ringing in my ears. I am also very nauseated pretty much 24-7. Yea, lucky me I got the entire gamut of side effects. My food tastes like it was forged at the Alcoa aluminum factory on the swing shift. I am scared to keep it in my mouth to long or it may oxidize on me. (Nothing like a rusty bowl of soup.) My smile is crooked now too. It does make me look cool with a cigar in my mouth though, in sort of a gangster kind of way. Between the pain scowl, nasty taste in my mouth and my permanent crooked smile I could pass for a Philly mob wise guy. It has been 4 nights now. It is bound to improve. As bad as it is it is not my worst complaint. > > Here is my worst complaint. My family is supportive but they just don't understand. You see, my frustration level and my wife and kids is escalating like never before. Simply because I cant understand what they are saying most the time now. It gets very old to ask folks to please repeat. In fact, it gets down right embarrassing after awhile. By the same token, they are literally leaving me out of conversations, decisions and just about anything verbal because of their frustration in having to repeat things over and over again to me. It is to the point that I am avoiding my whole family due to the communication issues and the frustration level. They are doing the same thing. It is very hard on a marriage. It is depressing. I find myself pretending I am asleep to avoid uncomfortable situations. I see my little girl entering then leaving a room upon finding I am sitting in the room. When they do talk to me, it seems like they have begun having just a little " attitude " and shrinking patients with my hearing. When I misunderstand them and ask what they said I get " never mind " more often than not now days. > > I have a hearing aid coming in a couple of weeks. I am sure it will help but in some ways, the damage has been done. Don't get me wrong, it is not enough of a problem to cause divorce or anything (yet) but I sure see that my spouse treats me different than she used to. I hurts a bit. I see my kids doing it too. It hurts from them even more. I am sure that I am overcompensating for this defect as well. I have found myself trying to " impose " my will or purposely trying to shake things up to get their attention for no other reason than I feel so left out anymore. > > I am not posting this for sympathy or tons of advice but rather so that someone else in this position or with a family member in this position might benefit from some insight from a person who has gone pretty much deaf in a month. > > It is just odd. One month ago, I never had thoughts one way or another regarding communication. I rather thought it was good in my house. Now, the whole communication thing is a daily struggle that I dread horribly. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Sorry you have been through so much. I am guessing because you LOOK the same your family are not realizing there is a difference. For instance my ex had TERRIBLE eye sight, but wore contacts and was pretty functional, but when his contacts were out he was very sight impaired and he would bump things, make a mess and just be irritating (to me). It caused issues because I wouldn't know that he was walking 'blind' and couldn't even see the mess he'd made. Once we communicated about it properly I was able to understand an tolerate and accommodate it much better. I think you need to sit everyone down and have a frank talk abuot what you are going through and how it is affecting you and work out ways for dealing with it together. Make it a constructive and shared talk, rather than a blame or shame session or gripe. Work out ways to be helpful and functional. Having to repeat everything you say can be very frustrating, so finding better ways to be heard the first time should work out well for everyone.My son is 10 and has lost quite a lot of hearing through c-tome, every now and again I'll mock-yell when he is 'ignoring' me and say 'Are you deaf?' to which he'll smirk and say 'Actually. YES!' He also has bad eyes and we recently went for an updated eye test to find that his sight has deteriorated quite badly (poor child deaf and blind!). Instead of being crushed by the news on the way out the mall he asked me to buy him something and when I said no he responded, 'Oh common on... I'm DISABLED!' The fact that he is so easy going and un-sensitive about his condition really helps. We can joke about it and just incorporate it into our lives rather than avoiding it or tip-toeing around it etc.So while it may not be easy but try to tackle it constructively and possible even in a more light hearted and comical sense. I hope that helps, and I hope you feel better too. It is hard to be happy and cheerful when you feel like crap, and there's no doubt you have been through a traumatic episode and it is not yet over. Work on your relationships as a priority and then see what you can do about processing all your emotional and psychological trauma, whch must be quite a lot for you to bear on your own. *HUGS*On 9 August 2010 21:31, kfoskett5 <kfoskett5@...> wrote: I had a lot of pain after my surgery too. I had major abdominal surgery 2 month before and that was a walk in the park compared to the ear surgery. I took Norco for about ten day after; the downside of the pain meds is they can a make you nauseous. I also have the horrible taste in my mouth. It's been 2 1/2 years since my surgery, it been an uphill battle. It took about 1 year before my hearing got better (My implant was put in during my first surgery). I have had infections on and off, I never gone longer than 2 month without seeing my surgeon (He is very aware that I'm getting frustrated with the process). I'm now allergic to Ciprodex, and in the last six months I've developed ringing and dizziness. The best advice I can offer is take it one day at a time. This is a great group of people to get advice from. Stay strong. Kathy > > This all happened so fast. 3 weeks ago I was a normal 42 year old guy who went to the doc over a sinus infection. Now, I am recovering from the removal of a golf ball sized cholesteatoma. > > I read quite a bit prior to the operation on the site. I must say I have experienced some serious pain in my life before. Ruptured tendons, broken bones, some bad burns, herniated disks and even had got my thumb chopped off and sewed back on again. Well, this pain tops them all. I just cant figure it out. Most folks I hear comments from suggest a little Tylenol and you will never no anything happened. Maybe I am all screwed up but man am I in pain. > > It is very frustrating but it sure sounds like the cholesteatoma experience has only just begun. from what I read from others posts. > > I have severe to profound hearing loss in my left ear. I have always got by on my good right ear. I thought about getting a hearing aid one day but was always putting it off due to the cost and the fact that my right ear was pretty darn good. Well, one day about three weeks ago I went to my primary physician. I thought I had a sinus infection or even some allergies. My ears were a bit plugged up and I thought that a hay-fever shot would fix me right up. When the doc told me he wanted a ct scan of my head I knew something was up. I really new something was up when he got me the ct appointment 10 minutes later in the same day and then had me referred to neuro surgeon the next morning. Normally it would take me a month to get visited by a specialist. Ha. Anyhow, the day the neuro saw me he wanted to operate on the right ear the next day. I told him to hold his horses and that this was going a little to fast for me. He told me he saw a 5cm mass on my ct scan affecting my good right ear and that if i was not having side effects, i would be soon. In fact, he wondered just how I could hear anything at all out of my right ear. > > Well we scheduled surgery about 10 days out. In that time my face began to go numb on the right side and I started getting migraines from hell. The worst part is that within a couple of days I lost all hearing in my " good " right ear. So hear I sat with profound hearing loss in one in and near profound in the other. I have a new found respect for the deaf. Hearing loss is tough to deal with. > > The doctor told me that it took 6 hrs. to get it all out. At least all that he could see. He is going back in my ear at 6 months. Sounds pretty standard. He says I will most likely loose a good portion of my hearing because an incredible amount of damage had been done but he just can't say until he starts to rebuild. > > I know this is all pretty common. What I didn't expect was the amount of pain I am experiencing after surgery. The right side of my head is swollen up. It feels like someone has a pencil shoved into my ear to about mid brain and has to poke it around for kicks every 20 minutes or so just to get my mind of the non stop industrial style ringing in my ears. I am also very nauseated pretty much 24-7. Yea, lucky me I got the entire gamut of side effects. My food tastes like it was forged at the Alcoa aluminum factory on the swing shift. I am scared to keep it in my mouth to long or it may oxidize on me. (Nothing like a rusty bowl of soup.) My smile is crooked now too. It does make me look cool with a cigar in my mouth though, in sort of a gangster kind of way. Between the pain scowl, nasty taste in my mouth and my permanent crooked smile I could pass for a Philly mob wise guy. It has been 4 nights now. It is bound to improve. As bad as it is it is not my worst complaint. > > Here is my worst complaint. My family is supportive but they just don't understand. You see, my frustration level and my wife and kids is escalating like never before. Simply because I cant understand what they are saying most the time now. It gets very old to ask folks to please repeat. In fact, it gets down right embarrassing after awhile. By the same token, they are literally leaving me out of conversations, decisions and just about anything verbal because of their frustration in having to repeat things over and over again to me. It is to the point that I am avoiding my whole family due to the communication issues and the frustration level. They are doing the same thing. It is very hard on a marriage. It is depressing. I find myself pretending I am asleep to avoid uncomfortable situations. I see my little girl entering then leaving a room upon finding I am sitting in the room. When they do talk to me, it seems like they have begun having just a little " attitude " and shrinking patients with my hearing. When I misunderstand them and ask what they said I get " never mind " more often than not now days. > > I have a hearing aid coming in a couple of weeks. I am sure it will help but in some ways, the damage has been done. Don't get me wrong, it is not enough of a problem to cause divorce or anything (yet) but I sure see that my spouse treats me different than she used to. I hurts a bit. I see my kids doing it too. It hurts from them even more. I am sure that I am overcompensating for this defect as well. I have found myself trying to " impose " my will or purposely trying to shake things up to get their attention for no other reason than I feel so left out anymore. > > I am not posting this for sympathy or tons of advice but rather so that someone else in this position or with a family member in this position might benefit from some insight from a person who has gone pretty much deaf in a month. > > It is just odd. One month ago, I never had thoughts one way or another regarding communication. I rather thought it was good in my house. Now, the whole communication thing is a daily struggle that I dread horribly. > Quote Link to comment Share on other sites More sharing options...
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