Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hi edie I seem to be in the same boat as you. I want know when I need to start treatment. My doc says not to worry now. Not to worry now??? I don't think she is to hip on whats up. I need to start seeing a gastro. They seem to have more answers thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hi edie I seem to be in the same boat as you. I want know when I need to start treatment. My doc says not to worry now. Not to worry now??? I don't think she is to hip on whats up. I need to start seeing a gastro. They seem to have more answers thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hi edie I seem to be in the same boat as you. I want know when I need to start treatment. My doc says not to worry now. Not to worry now??? I don't think she is to hip on whats up. I need to start seeing a gastro. They seem to have more answers thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hi edie I seem to be in the same boat as you. I want know when I need to start treatment. My doc says not to worry now. Not to worry now??? I don't think she is to hip on whats up. I need to start seeing a gastro. They seem to have more answers thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Hi Edie, I'm so glad to see you here, I think you'll like this group! Did your doctor say anything about a biopsy? This is the most important single test. It is the ONLY way to know if and how much damage has occurred to your liver. It's good that your liver function tests are normal, but that doesn't tell you for sure about damage to your liver. Your LFT's can be normal, and there still be extensive damage, even cirrhosis, in your liver. I realize that you are dealing with the VA here, but a biopsy is always recommended, even when LFT's are normal. As for the genotype, I think knowing is important as part of the decision making process on whether to treat now or later. It's a part of the whole picture. But one step at a time I suppose. I do believe that there will be a cure for HCV sometime, but I'm not too sure about the 'horizon'! Whatever that is. There are some much more promising treatments that will be available within the next 1 to 5 years, I would like to think one of the drugs now being studied is 'the cure', but it is way to soon to say. The drugs that will be hopefully available within a reasonable time period (1 - 5 years) will probably just be an improvement over the current interferon + ribavirin. The combo puts some people into remission. I doesn't work well on genotype 1's though. New drugs being studied, such as the pegylated interferons, Zadaxin and Maxamine, will probably just allow a greater number of people to go into remission. Hopefully a much greater number! So the key here is to make sure that when this cure comes along, somewhere down the road, that we have a functioning liver left. If a biopsy shows that you have little to no scaring, then you may have that time to wait. If you already have quite a bit of scaring, then treatment now can either put you into remission, or even just keep the virus down for a while and let your liver have a chance to recover and repair itself some. One thing to keep in mind is that treatment has a better chance of working before a lot of scarring has occurred, and while your viral load is low. This is a disease that requires careful monitoring, and I don't mean just occasionally checking LFT's. I've heard too many awful stories of that, where a person has gone from having LFT's checked every 6 months for several years, then suddenly needing a transplant, because no biopsy was ever done, and so no treatment was started. People don't usually have major symptoms of HCV until their liver begins to fail, and it's a bit late then. As you can see, I have mentioned biopsy several times. This wasn't really my purpose, but it is a point. So much information you need comes from the biopsy. So many things to think about, I know. Thankfully, this is a slowly progressing disease so there is rarely a reason to rush into anything. There is time to research, think, GET YOUR HUSBAND HOME!! Take care, and stay in touch. Hopefully you will be able to learn a lot here, and the moral support, being able to 'talk' with others who have HCV and know what you are going through is priceless. Good luck. Claudine ________________________________________________________________________ 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 April 20, 2000 Report Share Posted April 20, 2000 Hello , it's me again!!!! It never occurred to me you weren't seeing a specialist! This is definitely something you need a specialist for. Even with gastroenterologists all the new information tends to seep down slowly. Unless a doctor has made an effort to learn and be up-to-date on HCV, whatever he/she knows is likely to be way, way out of date. I don't even have anything else to do really, I don't work, and it's hard for me to read all the new articles and info that comes out and keep up with it. And it's the only disease I'm researching! Yeah, it's time to see a specialist! I'm really serious, I do 'know' someone who has been in the same situation, being monitored for years, told it was nothing to be concerned about, then wham! On the transplant list! Never even had a chance to try treatment, it was too late. It has now been a very rough road for him, and it didn't have to be that way. There were years when he could have gotten treatment. I am optimistic that there will be a cure for this someday, but in the mean time we have to make sure we stay alive and have some functioning liver left for when that time is here. Take care, Claudine ________________________________________________________________________ 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 April 20, 2000 Report Share Posted April 20, 2000 In a message dated 4/20/00 9:56:31 PM Eastern Daylight Time, erodrig1@... writes: << I went to my first gastro appt. today. The dr. told me it was of no use to know my genotype unless I go for treatment. You are going for a biopsy, correct? After 18 years infected, I think you should know if there's any damage and the extent. Peace, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 In a message dated 4/20/00 9:56:31 PM Eastern Daylight Time, erodrig1@... writes: << I went to my first gastro appt. today. The dr. told me it was of no use to know my genotype unless I go for treatment. You are going for a biopsy, correct? After 18 years infected, I think you should know if there's any damage and the extent. Peace, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 Edie, Who is your HMO???? Kaiser sent me to Scripps Green Hospital in La Jolla to see about getting on a trial through Dr McHutchison, who performed the biopsy. I, too, am in San Diego. My gastro said that if I couldnt get in the trail , that they would treat me. I am 3a, pcr 543,000 , stage 2 and they still feel I should be treated as soon as I can. You need a biopsy to determined what damage this disease has done to your liver. Email me privately if you wish for more info concerning our local trial program. Florence in San Diego > I went to my first gastro appt. today. The dr. told me it was of no use to > know my genotype unless I go for treatment. I had asked my type. > > I got a PCR of 852,030 and could have had the virus for 18 years now. I > have normal LFT and no symptoms. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 In a message dated 4/20/00 10:17:30 PM Eastern Daylight Time, Baggsdorf@... writes: << I need to start seeing a gastro. They seem to have more answers >> Yup! Even better would be to get an appt. with a liver specialist (hepatologist, I think). Ask your primary to give you a referral to the specialist. Don't go with a regular gastro. Nothing wrong with them - IMO - but I think of them as stomach doctors. Peace, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 In a message dated 4/21/00 12:27:24 AM Eastern Daylight Time, claudinecrews@... writes: << I have mentioned biopsy several times. This wasn't really my purpose, but it is a point. So much information you need comes from the biopsy. >> Whoops, Claudine. Read your reply to Edie after writing my own. Let's face it -- we're all a bit bassackwards! LOL. Edie, all of Claudine's post is right on. The mention of the slow-ish progression of Hep C is accurate. But, you must know your full status now. Peace, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 >From: Jane2370@... > >Yup! Even better would be to get an appt. with a liver specialist >(hepatologist, I think). Ask your primary to give you a referral to the >specialist. Don't go with a regular gastro. Nothing wrong with them - IMO >-but I think of them as stomach doctors. >Peace, > Jane A hepatologist is ideal, if you can find one. They are few and far between. Claudine ________________________________________________________________________ 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 April 21, 2000 Report Share Posted April 21, 2000 In a message dated 4/21/00 4:06:27 AM Eastern Daylight Time, claudinecrews@... writes: << A hepatologist is ideal, if you can find one. They are few and far between. Claudine >> True. I live in New York City, doctors galore!! I sometimes forget that this list includes people all over the country. When you live in a large city, you tend to get very blase' about expecting tx from specialists. And you know us " New Yawkers " - we think the world revolves around us! LOL! Seriously, you can find an excellent gastro for your needs by asking questions. Perhaps - " How up are you on the current information regarding Hep-C? What do you know about the current tx? " . Most importantly, in my mind, " How many Hep-C patients do you currently treat? " . I would ask that last question on the phone before making any appointment. That way you don't even have to waste your time going to the appointment. There is no shame in looking around. Take charge - this is your body! I've known plenty of heppers who have fired their dr. and gone elsewhere. Try to weed out from the beginning and find someone you feel is knowledgeable. Look for a good rapport, someone who listens. After all, this will be a long term relationship. Peace, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2000 Report Share Posted April 21, 2000 In a message dated 4/21/00 4:06:27 AM Eastern Daylight Time, claudinecrews@... writes: << A hepatologist is ideal, if you can find one. They are few and far between. Claudine >> True. I live in New York City, doctors galore!! I sometimes forget that this list includes people all over the country. When you live in a large city, you tend to get very blase' about expecting tx from specialists. And you know us " New Yawkers " - we think the world revolves around us! LOL! Seriously, you can find an excellent gastro for your needs by asking questions. Perhaps - " How up are you on the current information regarding Hep-C? What do you know about the current tx? " . Most importantly, in my mind, " How many Hep-C patients do you currently treat? " . I would ask that last question on the phone before making any appointment. That way you don't even have to waste your time going to the appointment. There is no shame in looking around. Take charge - this is your body! I've known plenty of heppers who have fired their dr. and gone elsewhere. Try to weed out from the beginning and find someone you feel is knowledgeable. Look for a good rapport, someone who listens. After all, this will be a long term relationship. Peace, Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 True Jane ahaha but some docs like mine do specialize in hep. All he has are hep patients and he's a " gastro " but very knowledgeable. So ask around. I found mine by asking at support groups who they liked and why. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2000 Report Share Posted April 23, 2000 True Jane ahaha but some docs like mine do specialize in hep. All he has are hep patients and he's a " gastro " but very knowledgeable. So ask around. I found mine by asking at support groups who they liked and why. alley/ ICQ 12631861 alleypat@... http://www.flash.net/~alleypat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Hi Vicki I was diagnosed with c-toma during surgery in Feb/02. Like you I had no symptoms, except deafness. I had a radical mastoidectomy " Canal Wall Down " in May, and I am fine. I never had drainage from my ear, but I remember during childhood having really bad earaches and I have had no other problems with infections or anything. The reason I found out about the c-toma was that I seemed to be suddenly very deaf in my rt ear. Initially it was dianosed as otosclerosis, I was having surgery for that when the growth was found, much to the extreme surprise of my surgeon. I had an intact eardrum, which is unusual with c-toma. Anyway, all is well and I seem to have healed so well, my surgeon is now willing to consider ossicular reconstruction in the spring. So take heart, don't be scared, take it one step at a time, and all will be well. Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Lynn, Thanks for the encouragement and sharing your experience. I guess I'll feel better once my ENT has my results and we discuss options. Until then I guess I just have to tough it out and try not to draw blood when I bite my nails! Vickie > Hi Vicki > I was diagnosed with c-toma during surgery in Feb/02. Like you I had no > symptoms, except deafness. I had a radical mastoidectomy " Canal Wall Down " > in May, and I am fine. I never had drainage from my ear, but I remember > during childhood having really bad earaches and I have had no other problems > with infections or anything. The reason I found out about the c- toma was > that I seemed to be suddenly very deaf in my rt ear. Initially it was > dianosed as otosclerosis, I was having surgery for that when the growth was > found, much to the extreme surprise of my surgeon. I had an intact eardrum, > which is unusual with c-toma. Anyway, all is well and I seem to have healed > so well, my surgeon is now willing to consider ossicular reconstruction in > the spring. So take heart, don't be scared, take it one step at a time, and > all will be well. > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Vickie: You said: I think my last ear infection was when I was 5 or 6 so I'm really shocked by this. I'm wondering if anyone else out there had a similar experience. I remember no prior ear infections. About four years ago, I noticed stuffy ears with my usual stuffy nose. In a few months, I found dried remains of drainage from an ear. I finally saw an ENT that diagnosed it as c-toma several months ago. Floyd O'Brien, Ph.D.fobrien1@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2002 Report Share Posted November 12, 2002 Floyd, > You said: > I remember no prior ear infections. About four years ago, I noticed stuffy ears with my usual stuffy nose. In a few months, I found dried remains of drainage from an ear. I finally saw an ENT that diagnosed it as c-toma several months ago. > If you don't mind my asking, what has happened since then as far as surgeries, hearing loss, etc. Thanks, Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2002 Report Share Posted November 14, 2002 Hi Vickie, My situation was similar. Stopped having ear infections when I was in 4th grade. Started with ringing in my ears about 2 years before diagnosed. 4 months before diagnosis realized I had a significant loss of hearing in that ear. Took 3 months for GP to send me to ENT. ENT knew when he looked in my ear it was C-toma but did a CAT scan to make sure and get some grasp of the extent. The CAT scan does not really show the exstent of the ctoma. To be proactive - get the surgery as soon as possible. The sooner the ctoma is out the less damage you will have. Keep us informed! Jane >From: " Vickie " <tottonv@...> >Reply-cholesteatoma >cholesteatoma >Subject: Newly diagnosed >Date: Tue, 12 Nov 2002 19:28:16 -0000 > >Hi there everyone! > >Like Debbie I'm a new member to the group. I just went for my CT >scan yesterday and should have results by tomorrow so my ENT can let >me know the next step. I have to say I'm pretty nervous about it and >just want to have it over with. The Doc is pretty sure it is c-toma >and wants to make sure with the CT scan and see how large an area is >effected. Unlike many of the postings and info I have found since >last Friday, (I was just diagnosed Thursday) my first symptom didn't >show up until early September. I think my last ear infection was >when I was 5 or 6 so I'm really shocked by this. I'm wondering if >anyone else out there had a similar experience. I appreciate any >info as I try to be very proactive and want to know all possible >outcomes. > >Thanks. > > _________________________________________________________________ Help STOP SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Becky Metallic taste means that the ctoma is putting pressure on the nerve running through your ear that controls taste. Many people only get that after the surgery because the nerve becomes bruised or stretched during the operation. It may not return to normal immediately. My own experience was that metallic and chemical tastes for a while before surgery but afterwards, I had no sense taste whatsoever. It took a few months before it came back fully - but everyone is affected differently. Drainage is usually caused by infection in the ctoma which only makes it even more destructive. So it is a little consolation if you have managed to avoid infection. Ctomas do damage in two ways a) by producing enzymes which cause erosion to structures in the ear and (as above) by expanding and putting pressure on the surrounding parts of the ear. So not surprising that you would experience pain, mostly in the ear and possible in the mastoid area behind the ear. And yes, it's quite likely that you will have had the disease for a long time before obvious symptoms start to appear. Impossible to say whether your hearing will increase or decrease after the surgery. It depends largely on how much damage has been done to the little chain of bones in the middle ear that conduct sound. There is often a second surgery 6 months or a year after the removal to reconstruct the hearing. Phil Hi all. I just went for a hearing test yesterday. My dr. said that the test indicated fluid where there was none, so he thought that the mass behind my eardrum was a c-toma. I go for a CT scan on Thursday. I guess my question would be this. Can anyone tell me what kind of hearing you had before surgery and how much you retained or regained after surgery? Also, I have not really had drainage, but there has been sharp shooting pains for years. Does this mean I may have gone undiagnosed for years? And one last question. In all the materials I have read there is a mention of a metallic taste after surgery, but I have had a metallic taste for about 2 weeks. Is this related? Thank you in advance. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Becky and welcome to the group. I had a slow decline of hearing over a year or so. In the last 3-4 months before surgery it deteriorated very quickly. I have limited hearing at this time, but will regain hearing at 2nd surgery (09/05) when the ossossilies (Sp?) are repaired. I also had sharp pains in my ear. I also had a metallic taste off and on for years. I also had a mild tingling for several years on the ctoma side of my face. The surgeon said the ctoma was very large and had been growing for many years. It filled the middle ear canal. I am now 2 months post op and the metallic taste is gone, the tingling comes and goes, but best of all..no pain!!! Best wishes for a successful outcome. Read through the material on this site regarding the importance of finding the best surgeon available, and ask all the questions you need to. The group is very supportive and very knowledgeable. Bettie cholesteatoma , " dylollie " <dylollie@y...> wrote: > > > Hi all. I just went for a hearing test yesterday. My dr. said that the > test indicated fluid where there was none, so he thought that the mass > behind my eardrum was a c-toma. I go for a CT scan on Thursday. I guess > my question would be this. Can anyone tell me what kind of hearing you > had before surgery and how much you retained or regained after surgery? > Also, I have not really had drainage, but there has been sharp shooting > pains for years. Does this mean I may have gone undiagnosed for years? > And one last question. In all the materials I have read there is a > mention of a metallic taste after surgery, but I have had a metallic > taste for about 2 weeks. Is this related? Thank you in advance. > becky > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Absolutely. My taste was off before my diagnosis. The symptoms I had, were a chronic clogged feeling. Doctor's said it was water in my ear, because I hearing test was flat lined. Well, as I know today, it wasn't fluid but C-toma. My surgeon also mentioned that I probably had it cooking for yrs, and when I think about it, yes, he's right. Usually when their detected, it's been growing for some time. I still have a taste distubance, but more so since surgery. Feels like I have a cold Not much appetite for anything really. I can also relate to the mettalic taste. I too have the same thing. > . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2005 Report Share Posted May 2, 2005 Hi Becky, I am new to the group and wish I had searched for it a couple of years ago. Just before my first occurence of c-toma was correctly diagnosed, I estimate I had lost over 80% of my hearing in one ear. After a CWU proceedure, it returned to a bit over %50 and better for some tone ranges. There was really no differnece before/after a second surgery. A metalic taste only appeared after surgery, on one side as the nerve that controls taste was cut. It goes away after a while. Rich > > > Hi all. I just went for a hearing test yesterday. My dr. said that the > test indicated fluid where there was none, so he thought that the mass > behind my eardrum was a c-toma. I go for a CT scan on Thursday. I guess > my question would be this. Can anyone tell me what kind of hearing you > had before surgery and how much you retained or regained after surgery? > Also, I have not really had drainage, but there has been sharp shooting > pains for years. Does this mean I may have gone undiagnosed for years? > And one last question. In all the materials I have read there is a > mention of a metallic taste after surgery, but I have had a metallic > taste for about 2 weeks. Is this related? Thank you in advance. > becky > . Quote Link to comment Share on other sites More sharing options...
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