Guest guest Posted January 30, 2004 Report Share Posted January 30, 2004 Sounds like you got a little more than you bargained for in the ER..... if it is indeed cholesteatoma, they will likely want to operate and remove it soon (rather than 'wait and see'). It's possible you have had it since you were a child; I am not sure how they determine when it started (if they even can determine that). As you will soon find out from the people in this group, there is a huge range of how the cholesteatoma behaves and how the surgery affects you. The dizziness post-operatively can depend on how extensive the cholesteatoma is (usually dizziness is more of a problem as the cholesteatoma moves to the inner ear / balance system). My ENT prepared me for some dizziness because many people get some temporary dizziness with any ear operation (thankfully, my constant dizziness lasted less than a week; I know for some it is much longer). I know you will get lots of helpful feedback from this group! good luck -- I hope you give an update after they discuss the findings with you. carrie > I haven't been able to hear very well from my right ear ever since I > was a kid. I am 37 now. I remember my parents yelling at me to > go " clean my ears " . I don't remember having repeated infections but > I did battle " swimmers ear " for a couple of summers. > > Anyways, I had a car accident last november and when the urgent care > dr. was checking my ears for a " closed head trauma " he said I had > something in there and referred me to an Audiologist & Head/Neck > surgeon. I have already had a CT scan and I see the surgeon on > Monday February 2 for the results. > > I have always had occasional drainage from that ear but it stops > just as fast as it would start. It seemed to be normal for that ear > so it didn't raise an alarm for me. I almost always have ringing in > that ear. Again, seemed to be normal for that ear. No dizziness, > or headaches. The left ear is fine with good hearing. > > I am not really nervous, just anxious to find out how big this thing > is, and to get it over with. Because I have had hearing loss since > I was a kid, does that mean that it has been there since then? Do > the dr's ever say " lets just wait and watch it to make sure it > doesn't get any bigger " ? Is dizziness after surgery a major > problem? If there is dizziness, does it go away? > > Any advice or wisdom would be appreciated. > > Thanks, JoAnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 Welcome to the group Shelia . No it is not necessarily good . The liver enzymes does not accurately depict the amount of damage in your liver . I have normal liver enzymes also , but am nearing endstage liver disease . There comes a point when the liver decompensates and then the enzymes can drop back to normal . So at this point your doctor should be sending you for an ultrasound and or a biopsy . Do you plan on treating ? Just Found Out Hi Everyone:Just founf out two weeks ago that I have Hep C. My mind is still a whirl wind and I am curious as to what steps should be taken next. I have had two blood test to confirm the disease however the ALT and AST are normal. IS this good?ThanksShelia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 I also think it matter HOW LONG one has had hep c,, its possible that she hasnt had it long enough for the enzymes to bee really high..elizabethnv1 <elizabethnv1@...> wrote: Welcome to the group Shelia . No it is not necessarily good . The liver enzymes does not accurately depict the amount of damage in your liver . I have normal liver enzymes also , but am nearing endstage liver disease . There comes a point when the liver decompensates and then the enzymes can drop back to normal .. So at this point your doctor should be sending you for an ultrasound and or a biopsy . Do you plan on treating ? Just Found Out Hi Everyone:Just founf out two weeks ago that I have Hep C. My mind is still a whirl wind and I am curious as to what steps should be taken next. I have had two blood test to confirm the disease however the ALT and AST are normal. IS this good?ThanksShelia Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2006 Report Share Posted October 20, 2006 I used to think that too Jackie , but I have heard of very aggressive hepatitis c . Where the infected persons liver failed within a few yrs only . Just Found Out Hi Everyone:Just founf out two weeks ago that I have Hep C. My mind is still a whirl wind and I am curious as to what steps should be taken next. I have had two blood test to confirm the disease however the ALT and AST are normal. IS this good?ThanksShelia Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 2006 Report Share Posted October 22, 2006 Welcome Shelia! I think most of the group would agree that you should next get a liver biopsy done to see if and to what degree damage you may have. Has your doctor spoken to you about having one done? Valarie --- Blue <blueiizpiscesgirl@...> wrote: > Hi Everyone: > Just founf out two weeks ago that I have Hep C. My > mind is still a > whirl wind and I am curious as to what steps should > be taken next. I > have had two blood test to confirm the disease > however the ALT and AST > are normal. IS this good? > Thanks > Shelia > > > > > > It's a pleasure having you join in our > conversations. We hope you have found the support > you need with us. > > If you are using email for your posts, for easy > access to our group, just click the link-- > Hepatitis C/ > > Happy Posting > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 , I am sorry that you received such depressing news. My wife was diagnosed with breast cancer and had a mastectomy in 1990 and was diagnosed with CLL in 1991. She has been free of any breast cancer since the surgery and began treatment for CLL in 2001. Thank God, she is doing well. My message is that you can have a good outcome and a long happy life with the proper help which you seem to be getting at MDA. Good health and good luck, Dan just found out Dear CLLers, Just found out yesterday that I also have breast cancer. I will be going to MD s to see Dr Keating for my CLL and they are going to try and set me up with an ocologist there for the breast cancer. I guess I just feel numb right now and just needed to tell my support team of the breast cancer, and my thoughts will be with all of you as I go to MD s. Take care everone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 Dear : Just wanted to let you know that you will be in my thoughts and prayers and I'm sure those of many others. We are all in this together, and we will all get through. I live by "Cancer is a word--not a sentence." Hope you are encouraged by all the wonderful strides being made everyday toward cures. Best Regards, Rosemarie lo just found out Dear CLLers, Just found out yesterday that I also have breast cancer. I will be going to MD s to see Dr Keating for my CLL and they are going to try and set me up with an ocologist there for the breast cancer. I guess I just feel numb right now and just needed to tell my support team of the breast cancer, and my thoughts will be with all of you as I go to MD s. Take care everone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2007 Report Share Posted April 27, 2007 , you are in my prayers, as is everyone on this wonderful list... but extra special ones are going out for you ! JudySee what's free at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2007 Report Share Posted April 28, 2007 Our prayers are with you. DanLINDA WARNER <warner@...> wrote: Dear CLLers, Just found out yesterday that I also have breast cancer. I will be going to MD s to see Dr Keating for my CLL and they are going to try and set me up with an ocologist there for the breast cancer. I guess I just feel numb right now and just needed to tell my support team of the breast cancer, and my thoughts will be with all of you as I go to MD s. Take care everone. Ahhh...imagining that irresistible "new car" smell? Check out new cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2007 Report Share Posted April 28, 2007 Dear CLLers, > Just found out yesterday that I also have breast cancer. I will be going to MD s to see Dr Keating for my CLL and they are going to try and set me up with an ocologist there for the breast cancer. I guess I just feel numb right now and just needed to tell my support team of the breast cancer, and my thoughts will be with all of you as I go to MD s. Take care everone. > > > > > > --------------------------------- > Ahhh...imagining that irresistible " new car " smell? > Check outnew cars at Autos. Ahhhhhhhhh ,I am sooooooooo sorry to hear this.You will be in my thoughts and prayers.Please let us know what you find out from Keating. God Bless, Debbie Light www.cllcfriends.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 First off,, welcome to the group adam! Yes, you should be fully and totally honest with your docs about the hep, but he/she will do labs and a biopsy to see just how bad of damage you do or do not have.. The things you would want to know right off would be 1. Genotype 2. biopsy results with stage of damage and grade of infection 3. all other lft's ( alt/ast, bili, protime, etc) 4. after you gather all the above info, then you want to decide about tx and you need to know if this gastro will treat your side effects or not.. and if he wont, then either talk with your primary care OR find another gastro who will treat your sides.. make sure whoever you have will treat your anemia first and only reduce your doses of tx meds as a LAST RESORT! I hope this helps! jaxadamhcv <adamhcv@...> wrote: I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it?Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Unless your hep interfers with work why tell them .... there is still allot of stigma out there and ignorance about hep c . See your doc , make a plan of action and if you decided to treat and during treatment if you become to sick to work then you should speak with your employers . Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 Unless your hep interfers with work why tell them .... there is still allot of stigma out there and ignorance about hep c . See your doc , make a plan of action and if you decided to treat and during treatment if you become to sick to work then you should speak with your employers . Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 BUT Liz, IF she doesnt tell them and she finds that she is making mistakes or cannot work a full day, THEY CAN FIRE HER,, but IF SHE HAS TOLD them,, then THEY HAVE to allow her time off and a reduced work schedule,, its the law,, she is protected under the ADA ONLY IF THEY KNOW,, she has to tell them....cuz if she doesnt, then she does NOT fall under this law and protection,, Who cares about the stigma,, its about protecting her job!elizabethnv1 <elizabethnv1@...> wrote: Unless your hep interfers with work why tell them .... there is still allot of stigma out there and ignorance about hep c . See your doc , make a plan of action and if you decided to treat and during treatment if you become to sick to work then you should speak with your employers . Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 BUT Liz, IF she doesnt tell them and she finds that she is making mistakes or cannot work a full day, THEY CAN FIRE HER,, but IF SHE HAS TOLD them,, then THEY HAVE to allow her time off and a reduced work schedule,, its the law,, she is protected under the ADA ONLY IF THEY KNOW,, she has to tell them....cuz if she doesnt, then she does NOT fall under this law and protection,, Who cares about the stigma,, its about protecting her job!elizabethnv1 <elizabethnv1@...> wrote: Unless your hep interfers with work why tell them .... there is still allot of stigma out there and ignorance about hep c . See your doc , make a plan of action and if you decided to treat and during treatment if you become to sick to work then you should speak with your employers . Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2007 Report Share Posted June 6, 2007 especially IF she is on treatment! If she is not going to do tx, then she does NOT have to tell them,,elizabethnv1 <elizabethnv1@...> wrote: Unless your hep interfers with work why tell them .... there is still allot of stigma out there and ignorance about hep c . See your doc , make a plan of action and if you decided to treat and during treatment if you become to sick to work then you should speak with your employers . Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 You know me, I am that in your face person who is a champion for folk with Hep C. When I started at my recent job, That was the first thing I told them. I told them uses universal precautions should I get hurt on the job, and am unable to take care of myself. My comments were duly noted. It did not affect the way the co workers worked with me. In fact several of my co workers had family members with Hep C. So they were very accepting. If they give her any problems then she has the law to fall back on. Love JanetJackie on <redjaxjm@...> wrote: BUT Liz, IF she doesnt tell them and she finds that she is making mistakes or cannot work a full day, THEY CAN FIRE HER,, but IF SHE HAS TOLD them,, then THEY HAVE to allow her time off and a reduced work schedule,, its the law,, she is protected under the ADA ONLY IF THEY KNOW,, she has to tell them....cuz if she doesnt, then she does NOT fall under this law and protection,, Who cares about the stigma,, its about protecting her job!elizabethnv1 <elizabethnv1earthlink (DOT) net> wrote: Unless your hep interfers with work why tell them .... there is still allot of stigma out there and ignorance about hep c . See your doc , make a plan of action and if you decided to treat and during treatment if you become to sick to work then you should speak with your employers . Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 > > I just found out im possitive for HCV im making my first appointment > with the gastro but my question is should I tell my job about my > condition? > > Has anyone had an experience good or bad about being honest and open > about it? > > > Jackie > > Hi Jackie, I tend to be a bit more open than many folk. I have experienced more neg stuff from my Nursing instructors than from the community in general, some have told me not to disclose. I tend to disclose to the people that I determine need to know, my dentist, my family, my friends and to those I legally have to tell, such as my clinical instructors, just as I may dsclose the fact that I am an alcoholic in recovery. There is still a lot of fear out there, but a lot of compassion and professionalism as well. I take every opportunity to educate as I can without making folk uncomfortable, I figure the best thing I can do is let them see that the healthy looking gal who has run a marathon in the past, can have Hep C, can treat and can get well with as much grace and dignity as possible. If things go to hell, I don't want to be surprising people with the information while in crisis. Such a personal thing, this Hep C journey... we all seem to find our own comfort zone, I guess. le Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 But what if she lives in a town so small and ignorgant that her employers think she can get them sick with a handshake or by using the same restroom . If she does then that employer may make her life so miserable there that she quits . I on one hand agree with you ,but on the other hand I know the ignorance still out there.. Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 well she doesnt need to tell them IF she decides NOT to do tx,, but IF she does tx, she MUST tell the HR person or she will have NO PROTECTION should she get sick while on tx..elizabethnv1 <elizabethnv1@...> wrote: But what if she lives in a town so small and ignorgant that her employers think she can get them sick with a handshake or by using the same restroom . If she does then that employer may make her life so miserable there that she quits . I on one hand agree with you ,but on the other hand I know the ignorance still out there.. Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 well I worked for a big ambulance service AMR when I found out,, and they were very cool about things,, very cool,, but they were educated about hep c,, kdaniellem <kdaniellem@...> wrote: > > I just found out im possitive for HCV im making my first appointment> with the gastro but my question is should I tell my job about my> condition?> > Has anyone had an experience good or bad about being honest and open> about it?> > > Jackie > > Hi Jackie, I tend to be a bit more open than many folk. I have experienced more neg stuff from my Nursing instructors than from the community in general, some have told me not to disclose. I tend to disclose to the people that I determine need to know, my dentist, my family, my friends and to those I legally have to tell, such as my clinical instructors, just as I may dsclose the fact that I am an alcoholic in recovery. There is still a lot of fear out there, but a lot of compassion and professionalism as well. I take every opportunity to educate as I can without making folk uncomfortable, I figure the best thing I can do is let them see that the healthy looking gal who has run a marathon in the past, can have Hep C, can treat and can get well with as much grace and dignity as possible. If things go to hell, I don't want to be surprising people with the information while in crisis.Such a personal thing, this Hep C journey... we all seem to find our own comfort zone, I guess.leJackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 yep and if she doesnt work around anything that 'could' cause bleeding problems, well then there is no need for them to know anyway... I was thinking about her being on Tx,, and if she does tx, then she needs to tell them,, so that she is covered by the ADA...Janet <doc_jade@...> wrote: You know me, I am that in your face person who is a champion for folk with Hep C. When I started at my recent job, That was the first thing I told them. I told them uses universal precautions should I get hurt on the job, and am unable to take care of myself. My comments were duly noted. It did not affect the way the co workers worked with me. In fact several of my co workers had family members with Hep C. So they were very accepting. If they give her any problems then she has the law to fall back on. Love JanetJackie on <redjaxjm > wrote: BUT Liz, IF she doesnt tell them and she finds that she is making mistakes or cannot work a full day, THEY CAN FIRE HER,, but IF SHE HAS TOLD them,, then THEY HAVE to allow her time off and a reduced work schedule,, its the law,, she is protected under the ADA ONLY IF THEY KNOW,, she has to tell them....cuz if she doesnt, then she does NOT fall under this law and protection,, Who cares about the stigma,, its about protecting her job!elizabethnv1 <elizabethnv1earthlink (DOT) net> wrote: Unless your hep interfers with work why tell them .... there is still allot of stigma out there and ignorance about hep c . See your doc , make a plan of action and if you decided to treat and during treatment if you become to sick to work then you should speak with your employers . Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Life is short, Break the rules, Forgive quickly, Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile. Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2007 Report Share Posted June 7, 2007 Exactly ... Just Found Out I just found out im possitive for HCV im making my first appointmentwith the gastro but my question is should I tell my job about mycondition?Has anyone had an experience good or bad about being honest and openabout it? Jackie Jackie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 If you do not tell your employeer that you have Hep-C, then you are risking the probability that should you need meds, they will not be covered under your insurance plan. I was forced into retirement when I came forward and told my company that I had Hep-C. But that was back in '92. I was treated like a complete outsider. I was advised by my boss and by the execs of the compnay that it would be in my best interest to retire and go for disability. So little was known about hep-c back then and the treatment was much harsher and totally experimental. I had to threaten my insurance company to get them to pay for my first tx treatment in '94. That was also the year the company told me my services were no longer needed. If you feel threatened about telling your boss, you may need to get yourself a good lawyer just incase they want to get aintsy about your job. I wish I had. Steve... Love is all you need Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2007 Report Share Posted June 8, 2007 well Steve, I agree with you on most of this,, but not telling your boss you have hep c if you are not going to treat may be the right thing to do,, until you decide to treat, then you gotta tell them because you will be protected under the ADA ,, but if you dont tell them and you start having trouble with fatigue, or an inability to be able to concentrate and you start making mistakes,, then they CAN fire you because UNLESS THEY KNOW,, you ARE NOT protected.. so if it were me,, I would ONLY tell them IF I intended to proceed with tx,, if not, I'd keep my mouth shut unless my job put me in a position of possibly getting cut and bleeding on someone... I was just very lucky because I worked for an ambulance service so we all knew about hep c...but I realize that not everyone has the same kind of boss... Im all for being upfront and honest about this and I REFUSE to be treated with any disrespect because of my hep, but I also realize that not everyone is as strong mentally as I am,, and I KNOW HOW to protect myself.. Steve Bridgers <stevebridgers@...> wrote: If you do not tell your employeer that you have Hep-C, then you are risking the probability that should you need meds, they will not be covered under your insurance plan. I was forced into retirement when I came forward and told my company that I had Hep-C. But that was back in '92. I was treated like a complete outsider. I was advised by my boss and by the execs of the compnay that it would be in my best interest to retire and go for disability. So little was known about hep-c back then and the treatment was much harsher and totally experimental. I had to threaten my insurance company to get them to pay for my first tx treatment in '94. That was also the year the company told me my services were no longer needed. If you feel threatened about telling your boss, you may need to get yourself a good lawyer just incase they want to get aintsy about your job. I wish I had. Steve... Love is all you need Take the Internet to Go: Go puts the Internet in your pocket: mail, news, photos more. Jackie Quote Link to comment Share on other sites More sharing options...
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