Guest guest Posted March 21, 2001 Report Share Posted March 21, 2001 Genteal Gel is wonderful! Also, at night you might want to try lacrilube or similar product-but it really blurs your vision so only use before you are ready to sleep. Debbie OH > I went to the eye doctor last week regarding blurred vision. He said it was > dry eyes and to use artificial tears (not Murine). I am using the artificial > tears and it seems to help. > > Elaine B. in Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 My daughter who is on plauqenil & ana positive complained of the same thing. This med along with the fact that she is ana positive are definite indicators that you can have eye involvement. I called her eye dr & her saw her right away. Everything was fine but I felt the better safe than sorry approach was right. Does Rob have regular eye exams? Not sure that this helps but thought I'd let you know my experience. Kris (Ashton 15 Poly JRA) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Val call the eye doctor and get him seen just precaution complains about her vission and i head to the eye dr so far its a visit every 3 months the eyes are nothing to play with and since the eye doctor could tell you more about how things look sees blurry vision myopea with stigmatism sensitive to light also call and see the eye dr Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2002 Report Share Posted March 20, 2002 Val, I experienced blurred vision as well as sensitivity to light and on occasion burning itching as well. Watch for extreme redness too. But it wouldn't hurt for Rob to see an Ophthalmologist. Rusty On Wed, 20 Mar 2002 14:29:29 EST carneyval@... writes: Hi all! What are the symptoms for uveitis or iritis (sp?) - Rob has complained of "blurry eyes" for three days - but he doesn't appear to have any trouble seeing. (Watching tv from across the room and being able to tell me what he sees & some other checks I did) - I called his Doc and she told me that since he is losing weight (with the taper the weight is really coming down!) - that this sometimes happens as the fluid level in the body is adjusting itself with weight changes. She said to keep an eye on him and let her know if it continues or if he has any other symptoms. What do you all think? Thanks.ValRob's Mom (4,systemic) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Val- Uveitis doesn't necessarily have observable symptoms. But when it does, it's usually red eyes, pain and watery eyes. Diane (, 2, pauci w/uveitis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks Robbin, I'll call and make an appt. Val Rob's Mom (4,systemic) In a message dated Wed, 20 Mar 2002 3:21:37 PM Eastern Standard Time, Robbin40@... writes: > Val > call the eye doctor and get him seen just precaution complains > about her vission and i head to the eye dr so far its a visit every 3 months > the eyes are nothing to play with and since the eye doctor could tell you > more about how things look > sees blurry vision myopea with stigmatism sensitive to light also > call and see the eye dr > Robbin > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks Kris. Rob isn't on Plauqenil - and I can't remember if he is ANA positive - I'll have to check his labs again. He is scheduled for annual eye exams - and had his last exam in July - but I think I will get him scheduled for an earlier exam to be on the safe side. Thanks again. Val Rob's Mom (4,systemic) In a message dated Wed, 20 Mar 2002 3:07:00 PM Eastern Standard Time, dkakheath@... writes: > My daughter who is on plauqenil & ana positive complained of the same thing. > This med along with the fact that she is ana positive are definite indicators > that you can have eye involvement. I called her eye dr & her saw her right > away. Everything was fine but I felt the better safe than sorry approach was > right. Does Rob have regular eye exams? Not sure that this helps but thought > I'd let you know my experience. > Kris (Ashton 15 Poly JRA) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks for the info Rusty. I am watching Rob closely - he's had no redness or tearing or discharge from the eyes - but i am going to call the eye doctor. Val Rob's Mom (4,systemic) In a message dated Wed, 20 Mar 2002 5:22:39 PM Eastern Standard Time, A Morse <dam755@...> writes: > > > > > > > > Val, I experienced blurred vision as well as sensitivity to light and on > occasion burning itching as well. Watch for extreme redness too. > But it wouldn't hurt for Rob to see an Ophthalmologist. > Rusty > > On Wed, 20 Mar 2002 14:29:29 EST carneyval@... writes: > > Hi all! What are the symptoms for uveitis or iritis (sp?) - Rob > has complained of " blurry eyes " for three days - but he doesn't appear to have > any trouble seeing. (Watching tv from across the room and being able to > tell me what he sees & some other checks I did) - I called his Doc and she > told me that since he is losing weight (with the taper the weight is really > coming down!) - that this sometimes happens as the fluid level in the body is > adjusting itself with weight changes. She said to keep an eye on him and > let her know if it continues or if he has any other symptoms. What do you all > think? Thanks. > > Val > Rob's Mom (4,systemic) > </TT> > > Your > use of is subject to the Terms of Service.</TT> > > > > > > > <!-- |**|begin egp html banner|**| --> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 I think you should get his eyes checked. Blurred vision can be a sign of iritis. Also pain, redness, tearing and light sensitivity. This can all orrur together or seperate. Also a change in the pupil dialation. The only way to tell is the eye DR. SO PLEASE GO TO THE EYE DR> Make sure you see an opthmologist. Thanks SHU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks Diane, like so many other things we have to be so vigilant with regarding our children. I was telling a friend of mine, whose children have no chronic illnesses - that every little sign or symptom has you going to the books or the computer and calling the Doctor. I don't want to over do it - but I am so afraid I will miss something and poor Rob will suffer for it. Take care! Val Rob's Mom (4,systemic) In a message dated Thu, 21 Mar 2002 11:52:14 AM Eastern Standard Time, dbornscheu@... writes: > > > Val- > > > > Uveitis doesn't necessarily have observable symptoms. But when it does, it's usually red eyes, pain and watery eyes. > > > > Diane (, 2, pauci w/uveitis) > > > > <!-- |**|begin egp html banner|**| --> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks Val Rob's Mom (4,systemic) In a message dated Thu, 21 Mar 2002 5:30:25 PM Eastern Standard Time, WELSMOYEDS@... writes: > I think you should get his eyes checked. Blurred vision can be a sign of > iritis. Also pain, redness, tearing and light sensitivity. This can all orrur > together or seperate. Also a change in the pupil dialation. The only way to > tell is the eye DR. SO PLEASE GO TO THE EYE DR> Make sure you see an > opthmologist. Thanks SHU > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Val your so right right now i am just watching she fell the other day and ever since her shoulder has been popping and getting sore right now its trying to just deal with it with hot baths and her meds i told her i will call the doctor friday if it aint better i dont want to be a pain in the butt for the doctor after the last 2 years we have had because i should be able to deal with alot of it like the doctor has showed us its just one thing pops up and its normal to get paranoid over protective yes Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Val i have learned so much about this JRA from this group and each day i learn even more and somethings are really fitting into place be sure on this eye doctor -----> inform them of the JRA and see them at least 2 times a year or more i carry 3 to 4 times ayear dentist ---> make sure you tell the dentist about the JRA you wouldnt think of telling these that the child has JRA but they also play a part of a complete medical team of help with JRA it effects every part of the body make sure they put it on the record also Robbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Robbin if has pain or swelling due to an injury you shouldn't be putting heat to it like you would with arthritis symptoms. Heat will bring blood supply to the area and make the pain worse . Use some ice packs and see if the pain doesn't stop. Always ice an injury! Hope this helps :)Tree:) Re: blurred vision Valyour so right right now i am just watching she fell the other dayand ever since her shoulder has been popping and getting sore right now itstrying to just deal with it with hot baths and her meds i told her i willcall the doctor friday if it aint better i dont want to be a pain in thebutt for the doctor after the last 2 years we have had because i should beable to deal with alot of it like the doctor has showed us its just onething pops up and its normal to get paranoidover protective yesRobbin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 Hi Robbin - Yes - his eye doctor is already aware of the JRA - Rob hasn't seen the dentist yet since the diagnosis in the summer - but I will be sure to let him know. Thanks Val Rob's Mom (4,systemic) In a message dated Thu, 21 Mar 2002 8:41:01 PM Eastern Standard Time, Robbin40@... writes: > Val > i have learned so much about this JRA from this group and each day i learn > even more and somethings are really fitting into place > be sure on this > eye doctor -----> inform them of the JRA and see them at least 2 times a > year or more i carry 3 to 4 times ayear > dentist ---> make sure you tell the dentist about the JRA > you wouldnt think of telling these that the child has JRA but they also > play a part of a complete medical team of help with JRA it effects every > part of the body > make sure they put it on the record also > Robbin > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 Hello, i don't have a ringing in my ears but, when I had my c-toma removed from my left ear because it was on the membrane of my brain the surgery caused trauma and I had brain swelling that caused my optical nerve to go crazy for about 6 months. it never returned to normal, i wear glasses now and every now and then my left eye get hazy. But my left ear allways seems to hurt. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2003 Report Share Posted December 4, 2003 As ctoma progresses it can start to cause many increasing symptoms. The blurred vision (and I once had bouts of double vision too) is, I think, related to pressure being placed on the cranial nerves that run through and around the ear. Branches of the facial nerve control movement and sensation of the face, muscles around the eye, mouth, taste, neck and shoulder. So it may mean lots of reflected pains and symptoms which will get worse until the ctoma is removed. I hope you've got a surgery appointment soon. Phil I'm hoping this sounds familiar to someone....I have c-toma and over the last few days I've had an earache, not constant, it comes and goes. All day I've had really loud tinnitus in my ear and over the last 48 hrs my vision has been bluring sligthly. Has anyone else had these symptoms all together? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Thanks for the replies guys! My consultant doesnt want to operate. He had me scheduled for a modified radilal mastoidectomy about 18 months ago and changed his mind on the day, and since then he has just been putting in gromits, which only seem to last in my ear about 5 months before they come out. I have asked if it is wise to not operate and just keeps saying he has it under control, he says the pain and draining is just something that will always be there, and likewise with the dizziness. There isnt really anywhere to get a second opinion that i can afford so at the moment I'll just have to go with what he says, but I'm not very happy with the way treatment is going at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Sorry, but that doesn't sound good - do you know the reason for the surgery cancellation? Ctoma doesn't go away or lessen of it's own accord and the only way of managing the disease is if the doctor keeps attacking it with the suction device (which wouldn't be possible if it's behind an intact eardrum). There can't be many reasons for managing a ctoma rather than operating e.g. for people who are too unwell to face surgery or that the ctoma is unusually complicated and surgery might not be effective. Can I ask what country you are in? Someone on the board may be able to suggest a way of getting a second opinion. Phil Thanks for the replies guys! My consultant doesnt want to operate. He had me scheduled for a modified radilal mastoidectomy about 18 months ago and changed his mind on the day, and since then he has just been putting in gromits, which only seem to last in my ear about 5 months before they come out. I have asked if it is wise to not operate and just keeps saying he has it under control, he says the pain and draining is just something that will always be there, and likewise with the dizziness. There isnt really anywhere to get a second opinion that i can afford so at the moment I'll just have to go with what he says, but I'm not very happy with the way treatment is going at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 I'm in Ireland Phil. The reason he cancelled at the time was because I had a cold. He then decided the operation was " unnecessary at that time " and he would put it off until the future. As far as i know my eardrum is seriously deformed, it attached to the roof of the ear rather than forming a film as such across the ear. I have had CT scans showing the c-toma done before I was due to have the MRM op, and had it done again showing the c-toma even bigger recently, and am having more and more symptoms, yet all the doctor keeps suggesting is the gromits and cleaning every 6 weeks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Quoting pmay82 <pmay82@...>: > Thanks for the replies guys! My consultant doesnt want to operate. > He had me scheduled for a modified radilal mastoidectomy about 18 > months ago and changed his mind on the day, and since then he has > just been putting in gromits, which only seem to last in my ear > about 5 months before they come out. I have asked if it is wise to > not operate and just keeps saying he has it under control, he says > the pain and draining is just something that will always be there, > and likewise with the dizziness. There isnt really anywhere to get a > second opinion that i can afford so at the moment I'll just have to > go with what he says, but I'm not very happy with the way treatment > is going at all. > > Wait a minute! You've been diagnosed with cholesteatoma and nobody's taking it out? It's NOT to go AWAY by itself! Blurred vision, dizziness, pain and draining are all signs that your c-toma is causing nerve damage. THE ONLY TREATMENT FOR C-TOMA IS SURGERY!! Get another appointment, print and show your consultant these references: http://library.gallaudet.edu/dr/faq-etiol.html http://www.nycornell.org/ent/cholesteatoma.html http://www.earsurgery.org/surgcho.html http://health.allrefer.com/health/cholesteatoma-treatment.html http://www.ohsu.edu/som-Otolaryn/somweb/Chol.html A surprising number of health professionals, including physicians, don't have a clue about the effects and long term outlook on patients with untreated cholesteatoma. Unfortunately, due to the advent of managed care, it is less expensive or easier not to do surgery. Pennywise and pound foolish. The system is overburdened and under funded. Scheduling and making referrals, performing surgery and follow up care take lots of time. Add a little bit of doctor ego to the mix and there can be disastrous results. In my own experience in the medical field (nearly 20 years), often only the most assertive, persistent, determined, educated patients get the appropriate care they need and deserve. So what if your consultant gets angry with you? He doesn't have to live with the results of delayed or no treatment for a very persistent, invasive and destructive growth. You do. Left untreated, cholesteatoma will eventually cause erosion of the ossicles. It will migrate far into the mastoid and involve facial nerves. I have permanent loss of taste on the left side of my mouth from this. The nerve had to be removed because it was so engulfed with growth. Loss of sight is a possible result. If it involves the dura, it can cause meningitis, or worse. If you can't get your consultant to get moving on your surgery, scrape your savings together and see someone else. Your long term health is at stake. Dizziness, blurry vision and the other symptoms you describe are NOT normal and you don't have to live with them. They are signs that this insidious keratoma is doing very bad things. Let us know what happens. I'll worry until I hear that something is being done for you. -- Diane Brunet http://www.sassysuds.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Hiya! Yes I have had this problem..especially when i'm a little tired I have difficulty fully focusing and sometimes suffer nystigmas where my eyes, ever so slightly, move side to side of their own accord. It's not really noticeable to anyone else 'cept me. I had this problem since back in April when I had a really bad ear infection which eventually led to ctoma diagnosis. Not sure why I have it but I do feel I need to get my eyes checked as sometimes it can be bad. I thought maybe removing the ctoma and mastoidectomy in October may have helped but this isn't so....just thoughtv i'd let you know you're not alone! - In cholesteatoma , " pmay82 " <pmay82@y...> wrote: > > Hey everyone! > > I'm hoping this sounds familiar to someone....I have c-toma and over > the last few days I've had an earache, not constant, it comes and > goes. All day I've had really loud tinnitus in my ear and over the > last 48 hrs my vision has been bluring sligthly. Has anyone else had > these symptoms all together? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Thanks for the references Diane. I have printed them and am bringing them to my next appointment. I am seriously concerned about the fact that very little seems to be getting done about the c-toma, its just over 2 years since my diagnosis. As for scraping my savings together, not much chance of that. I'm 21 and in my first year of Uni so I'm broke! I'm finding it really difficult to keep up because I've been having so many problems with the blurred vision and ear/head aches that are distracting me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2003 Report Share Posted December 5, 2003 Hi, I'm in Ireland too. Can i ask you which part. I was diagnosed Easter of this year with c-toma and eventually it was removed in the Beaumont in Dublin in November. I have VHI but it wasn't requested in the Beaumont - i wasn't a private patient. I've been reading the posts on this group since been diagnosed and believe me they all say to have the surgery. I was originally diagnosed in Sligo. I've been having ear problems for the last 7 years but have found all my docs great. If you want names, tell me. take care. ann.pmay82 <pmay82@...> wrote: Thanks for the replies guys! My consultant doesnt want to operate. He had me scheduled for a modified radilal mastoidectomy about 18 months ago and changed his mind on the day, and since then he has just been putting in gromits, which only seem to last in my ear about 5 months before they come out. I have asked if it is wise to not operate and just keeps saying he has it under control, he says the pain and draining is just something that will always be there, and likewise with the dizziness. There isnt really anywhere to get a second opinion that i can afford so at the moment I'll just have to go with what he says, but I'm not very happy with the way treatment is going at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2003 Report Share Posted December 6, 2003 Hi Ann, I live in Dublin, and go to college not far from Beaumont. I'm being treated in St. 's Hospital at the moment. I am going to go to my doctor with some questions as to why the c-toma has not been removed and if the answers are unsatisfactory I think I'll be left with no option but to go to another ENT department. You seem very happy with your treatment in Beaumont, anf beaumont would be my obvious preference after 's. How long were you waiting for your initial appointment there? Quote Link to comment Share on other sites More sharing options...
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