Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 In a message dated 23/02/2006 11:28:23 GMT Standard Time, strask3@... writes: We kept it in check for a while, but I am thinking about doing the drugs again. Hi and welcome, I'm sorry that things have gone downhill for you. I hope that if you do decide to start taking the meds again that this will help you with the flare you seem to be going through at the moment. Good luck, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I failed to mention that we are in the Dallas/Fort Worth area should any one have recommendations where he might seek treatment. Thanks, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Is this another name for polynatol cyst sp? kayibu <kayibu@...> wrote: Hello Everyone, I am writing because, not only do I suffer from back issues, but more immediate is my husband's issue. Pending an MRI, we suspect he is suffering from Coccydynia...Unfortunately, his job requires he travel any where from 75 to 300 miles a day; which exacerbates the problem. Has any one in the group had treatment that was effective immediately and held promise for better days? We look forward to hearing from you and thank you in advance for your support. Kay & Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I don't believe so, I think basically, it is just tail bone pain. From what we have read it normally happens from a backward fall. Our recollection of a fall is several years ago. I researched pilonidal cyst after your response and it doesn't fit his symtoms. He basically has extreme tenderness when sitting. From the way he desribes the pain I would venture to guess it feels like nerve pain. He says while sitting it is very tender and both cheeks feel flushed. He does very well laying on either side and/or walking. He just can't sit. > > Is this another name for polynatol cyst sp? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 Sounds like he bruised his tail bone...that has to hurt. I have a cyst, and only stopped feeling it when I gained some weight. It is hereditary. My mother had it, my sister has it worse than me, and me. kayibu <kayibu@...> wrote: I don't believe so, I think basically, it is just tail bone pain. From what we have read it normally happens from a backward fall. Our recollection of a fall is several years ago. I researched pilonidal cyst after your response and it doesn't fit his symtoms. He basically has extreme tenderness when sitting. From the way he desribes the pain I would venture to guess it feels like nerve pain. He says while sitting it is very tender and both cheeks feel flushed. He does very well laying on either side and/or walking. He just can't sit. > > Is this another name for polynatol cyst sp? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2006 Report Share Posted March 23, 2006 I had one of those taken out but before that it was trouble and painful, good riddence to that pain in the ass cyst. --- mary wilson <amiesmom_21502@...> wrote: > Is this another name for polynatol cyst sp? > > > > kayibu <kayibu@...> wrote: > Hello Everyone, > > I am writing because, not only do I suffer from back > issues, but more > immediate is my husband's issue. > > Pending an MRI, we suspect he is suffering from > Coccydynia...Unfortunately, his job requires he > travel any where from > 75 to 300 miles a day; which exacerbates the > problem. > > Has any one in the group had treatment that was > effective immediately > and held promise for better days? > > We look forward to hearing from you and thank you in > advance for your > support. > > Kay & Mike > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 My mother had to have hers removed. She fell on it and broke it. Serena None <dancerserena@...> wrote: I had one of those taken out but before that it was trouble and painful, good riddence to that pain in the ass cyst. --- mary wilson <amiesmom_21502@...> wrote: > Is this another name for polynatol cyst sp? > > > > kayibu <kayibu@...> wrote: > Hello Everyone, > > I am writing because, not only do I suffer from back > issues, but more > immediate is my husband's issue. > > Pending an MRI, we suspect he is suffering from > Coccydynia...Unfortunately, his job requires he > travel any where from > 75 to 300 miles a day; which exacerbates the > problem. > > Has any one in the group had treatment that was > effective immediately > and held promise for better days? > > We look forward to hearing from you and thank you in > advance for your > support. > > Kay & Mike > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2006 Report Share Posted March 24, 2006 hi there, In 190 i had a bad fall down a flight of stairs and ended up with coxadinia.. in the end it was so paiful i had a full coxajotamy done... This was the removal of the taibone plus the stabilisation part. as soon as i had the surgery done i felt instant relief.. just wanted to share this. love and thanks guys for having me here. love cheryl. tasmania xxxxxxxxxxxxx mary wilson <amiesmom_21502@...> wrote: My mother had to have hers removed. She fell on it and broke it. Serena None <dancerserena@...> wrote: I had one of those taken out but before that it was trouble and painful, good riddence to that pain in the ass cyst. --- mary wilson <amiesmom_21502@...> wrote: > Is this another name for polynatol cyst sp? > > > > kayibu <kayibu@...> wrote: > Hello Everyone, > > I am writing because, not only do I suffer from back > issues, but more > immediate is my husband's issue. > > Pending an MRI, we suspect he is suffering from > Coccydynia...Unfortunately, his job requires he > travel any where from > 75 to 300 miles a day; which exacerbates the > problem. > > Has any one in the group had treatment that was > effective immediately > and held promise for better days? > > We look forward to hearing from you and thank you in > advance for your > support. > > Kay & Mike > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Welcome!!!!! I'm Sally..... What is your genotype??????? How do you feel??????? How long have you had it????? Have you had a biopsy???? What did it say????? Lots of people and docs will all tell you different things. We have lots of people who did TX and cleared. We have people who did TX and got too sick. We have people who did TX and did not clear. We have people who did nothing...... I am genotype 1b a NON responding type.... anyway, I have never done TX...... would not do it because I don't want to be sick. OR any sicker. I have had this lovely dragon for about 40 years. Yes, sadly you will hear many different things from different docs, different people....... main thing.....don't stress..... This is a great list..... you will get good advice.... find a goood doc who knows........ So, Where are you. ? I am in California? I am 57 yrs whatever on the planet..... one biopsy said i had cirrhosis, another said only fibrosis...... I have good days bad days... good weeks bad weeks....... for the most part. I'm doing OK.... Today is a good day and getting ready to get dressed hahaha finally..... and take my healing from surgery BEARdog for a walk. You are not alone.... if you have messenger, add me.... nmilover if you want. write me privately if you want. there are also lots of links.... one good one I like is http://www.hepcnet.net you will find lots of info and fun stuff...... Welcome sorry why, you are not alone.... here for you, hepper hugs, sally > > Hi everyone, > > You've prbably heard it before but,I dont know who to listen to. > Routine physical for life insurance. Denied because of " elevated liver > function " .Go to Dr.,new town,did'nt know anyone at the time. He > says ,Hep c. I go to gastro,he says,biopsy. OK,I do it. He > says,Interferon,immediately. I say no. Send results to my lifelong Dr > back home. After three weeks of hassling with him to get MY test > results,he finally sends them to my Dr. > HE says, " looks like just the veeery begining of it " > All levels are marginal. I go back to Dr a year later and say " lets > start from scratch " We re-do blood test and they all come back NORMAL! > Dr says " that does'nt mean anything " Well,maybe the original tests > did'nt mean anything either! Do levels jump around like that? It all > just seems so easy for the doctors and drug companies to scare you into > this " treatment " that has such a poor success rate. > I'm a 50 yr old male,no longer using alcohol,have always eaten > healthyand,dont think it would be worth the trouble to take the " cure " . > Any and all thoughts appreciated!! Happy New Year! Joe in > Nevada > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2007 Report Share Posted January 4, 2007 Hi Joe, I have toxic hepatitis ... we think cortisone lumbar shots and lotsa Advil is the cause. My enzymes are HUGE ... over 1000. Bilirubin 7.9. I am trying to cleanse it out of my liver with nutrition, vitamins, minerals, juices. While I do this I asked my GP physician to order blood tests to monitor my progress. I have had the numbers go down 500 pts then up 300 pts in a two week period. I feel your frustration. Now my GP canceled my blood tests and refuses any more until I get a biopsy. I don't want a biopsy ... especially when I learn of everyone's poor results ... what good is it? I may go get some oxygen, collidial silver and other detox therapies at a clinic. I'm in no hurry; I don't feel horrible. I can understand how furious you must be. Hang in there. *^*^*^*^*^*^*^*^*^*^*^*^*^*^* and Annette Meisner ;~> http://www.angelfire.com/or/TREEOFLIFE Bible lessons *^*^*^*^*^*^*^*^*^*^*^*^*^*^* another newbie Hi everyone, You've prbably heard it before but,I dont know who to listen to. Routine physical for life insurance. Denied because of " elevated liver function " .Go to Dr.,new town,did'nt know anyone at the time. He says ,Hep c. I go to gastro,he says,biopsy. OK,I do it. He says,Interferon, immediately. I say no. Send results to my lifelong Dr back home. After three weeks of hassling with him to get MY test results,he finally sends them to my Dr. HE says, " looks like just the veeery begining of it " All levels are marginal. I go back to Dr a year later and say " lets start from scratch " We re-do blood test and they all come back NORMAL! Dr says " that does'nt mean anything " Well,maybe the original tests did'nt mean anything either! Do levels jump around like that? It all just seems so easy for the doctors and drug companies to scare you into this " treatment " that has such a poor success rate. I'm a 50 yr old male,no longer using alcohol,have always eaten healthyand,dont think it would be worth the trouble to take the " cure " . Any and all thoughts appreciated! ! Happy New Year! Joe in Nevada <!-- #ygrp-mlmsg {font-size:13px;font-family:arial,helvetica,clean,sans-serif;} #ygrp-mlmsg table {font-size:inherit;font:100%;} #ygrp-mlmsg select, input, textarea {font:99% arial,helvetica,clean,sans-serif;} #ygrp-mlmsg pre, code {font:115% monospace;} #ygrp-mlmsg * {line-height:1.22em;} #ygrp-text{ font-family:Georgia; } #ygrp-text p{ margin:0 0 1em 0; } #ygrp-tpmsgs{ font-family:Arial; clear:both; } #ygrp-vitnav{ padding-top:10px; font-family:Verdana; font-size:77%; margin:0; } #ygrp-vitnav a{ padding:0 1px; } #ygrp-actbar{ clear:both; margin:25px 0; white-space:nowrap; color:#666; text-align:right; } #ygrp-actbar .left{ float:left; white-space:nowrap; } ..bld{font-weight:bold;} #ygrp-grft{ font-family:Verdana; font-size:77%; padding:15px 0; } #ygrp-ft{ font-family:verdana; font-size:77%; border-top:1px solid #666; padding:5px 0; } #ygrp-mlmsg #logo{ padding-bottom:10px; } #ygrp-vital{ background-color:#e0ecee; margin-bottom:20px; padding:2px 0 8px 8px; } #ygrp-vital #vithd{ font-size:77%; font-family:Verdana; font-weight:bold; color:#333; text-transform:uppercase; } #ygrp-vital ul{ padding:0; margin:2px 0; } #ygrp-vital ul li{ list-style-type:none; clear:both; border:1px solid #e0ecee; } #ygrp-vital ul li .ct{ font-weight:bold; color:#ff7900; float:right; width:2em; text-align:right; padding-right:.5em; } #ygrp-vital ul li .cat{ font-weight:bold; } #ygrp-vital a { text-decoration:none; } #ygrp-vital a:hover{ text-decoration:underline; } #ygrp-sponsor #hd{ color:#999; font-size:77%; } #ygrp-sponsor #ov{ padding:6px 13px; background-color:#e0ecee; margin-bottom:20px; } #ygrp-sponsor #ov ul{ padding:0 0 0 8px; margin:0; } #ygrp-sponsor #ov li{ list-style-type:square; padding:6px 0; font-size:77%; } #ygrp-sponsor #ov li a{ text-decoration:none; font-size:130%; } #ygrp-sponsor #nc { background-color:#eee; margin-bottom:20px; padding:0 8px; } #ygrp-sponsor .ad{ padding:8px 0; } #ygrp-sponsor .ad #hd1{ font-family:Arial; font-weight:bold; color:#628c2a; font-size:100%; line-height:122%; } #ygrp-sponsor .ad a{ text-decoration:none; } #ygrp-sponsor .ad a:hover{ text-decoration:underline; } #ygrp-sponsor .ad p{ margin:0; } o {font-size:0;} ..MsoNormal { margin:0 0 0 0; } #ygrp-text tt{ font-size:120%; } blockquote{margin:0 0 0 4px;} ..replbq {margin:4;} --> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 ---I dont know what genotype I am. I feel fine and always have.It could be denial but,I dont believe I have it,or if I do,I dont care. I eat right,dont drink,and dont trust doctors anymore. If its true that " it " could become cancer in 20 yrs. well,that';ll be 70 for me and I'll have seen my kids grow up and have families of their own. I'm glad some people have had success with the variuos treatments. I just dont think I want to go through it. Joe In Hepatitis C , " Sally " <nmilover@...> wrote: > > Welcome!!!!! I'm Sally..... What is your genotype??????? How do you feel??????? How long > have you had it????? Have you had a biopsy???? What did it say????? > > Lots of people and docs will all tell you different things. We have lots of people who did TX > and cleared. We have people who did TX and got too sick. We have people who did TX and > did not clear. We have people who did nothing...... > > I am genotype 1b a NON responding type.... anyway, I have never done TX...... would not > do it because I don't want to be sick. OR any sicker. I have had this lovely dragon for about > 40 years. > > Yes, sadly you will hear many different things from different docs, different people....... > main thing.....don't stress..... This is a great list..... you will get good advice.... find a > goood doc who knows........ > > So, Where are you. ? I am in California? I am 57 yrs whatever on the planet..... one biopsy > said i had cirrhosis, another said only fibrosis...... I have good days bad days... good weeks > bad weeks....... for the most part. I'm doing OK.... Today is a good day and getting ready > to get dressed hahaha finally..... and take my healing from surgery BEARdog for a walk. > > You are not alone.... if you have messenger, add me.... nmilover if you want. write > me privately if you want. > > there are also lots of links.... one good one I like is http://www.hepcnet.net you will find > lots of info and fun stuff...... > > Welcome sorry why, you are not alone.... here for you, hepper hugs, sally > > > > > > > > Hi everyone, > > > > You've prbably heard it before but,I dont know who to listen to. > > Routine physical for life insurance. Denied because of " elevated liver > > function " .Go to Dr.,new town,did'nt know anyone at the time. He > > says ,Hep c. I go to gastro,he says,biopsy. OK,I do it. He > > says,Interferon,immediately. I say no. Send results to my lifelong Dr > > back home. After three weeks of hassling with him to get MY test > > results,he finally sends them to my Dr. > > HE says, " looks like just the veeery begining of it " > > All levels are marginal. I go back to Dr a year later and say " lets > > start from scratch " We re-do blood test and they all come back NORMAL! > > Dr says " that does'nt mean anything " Well,maybe the original tests > > did'nt mean anything either! Do levels jump around like that? It all > > just seems so easy for the doctors and drug companies to scare you into > > this " treatment " that has such a poor success rate. > > I'm a 50 yr old male,no longer using alcohol,have always eaten > > healthyand,dont think it would be worth the trouble to take the " cure " . > > Any and all thoughts appreciated!! Happy New Year! Joe in > > Nevada > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2007 Report Share Posted January 6, 2007 ---I dont know what genotype I am. I feel fine and always have.It could be denial but,I dont believe I have it,or if I do,I dont care. I eat right,dont drink,and dont trust doctors anymore. If its true that " it " could become cancer in 20 yrs. well,that';ll be 70 for me and I'll have seen my kids grow up and have families of their own. I'm glad some people have had success with the variuos treatments. I just dont think I want to go through it. Joe In Hepatitis C , " Sally " <nmilover@...> wrote: > > Welcome!!!!! I'm Sally..... What is your genotype??????? How do you feel??????? How long > have you had it????? Have you had a biopsy???? What did it say????? > > Lots of people and docs will all tell you different things. We have lots of people who did TX > and cleared. We have people who did TX and got too sick. We have people who did TX and > did not clear. We have people who did nothing...... > > I am genotype 1b a NON responding type.... anyway, I have never done TX...... would not > do it because I don't want to be sick. OR any sicker. I have had this lovely dragon for about > 40 years. > > Yes, sadly you will hear many different things from different docs, different people....... > main thing.....don't stress..... This is a great list..... you will get good advice.... find a > goood doc who knows........ > > So, Where are you. ? I am in California? I am 57 yrs whatever on the planet..... one biopsy > said i had cirrhosis, another said only fibrosis...... I have good days bad days... good weeks > bad weeks....... for the most part. I'm doing OK.... Today is a good day and getting ready > to get dressed hahaha finally..... and take my healing from surgery BEARdog for a walk. > > You are not alone.... if you have messenger, add me.... nmilover if you want. write > me privately if you want. > > there are also lots of links.... one good one I like is http://www.hepcnet.net you will find > lots of info and fun stuff...... > > Welcome sorry why, you are not alone.... here for you, hepper hugs, sally > > > > > > > > Hi everyone, > > > > You've prbably heard it before but,I dont know who to listen to. > > Routine physical for life insurance. Denied because of " elevated liver > > function " .Go to Dr.,new town,did'nt know anyone at the time. He > > says ,Hep c. I go to gastro,he says,biopsy. OK,I do it. He > > says,Interferon,immediately. I say no. Send results to my lifelong Dr > > back home. After three weeks of hassling with him to get MY test > > results,he finally sends them to my Dr. > > HE says, " looks like just the veeery begining of it " > > All levels are marginal. I go back to Dr a year later and say " lets > > start from scratch " We re-do blood test and they all come back NORMAL! > > Dr says " that does'nt mean anything " Well,maybe the original tests > > did'nt mean anything either! Do levels jump around like that? It all > > just seems so easy for the doctors and drug companies to scare you into > > this " treatment " that has such a poor success rate. > > I'm a 50 yr old male,no longer using alcohol,have always eaten > > healthyand,dont think it would be worth the trouble to take the " cure " . > > Any and all thoughts appreciated!! Happy New Year! Joe in > > Nevada > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2007 Report Share Posted January 10, 2007 Dear Joe, In 1969, I had a transfusion. I did not find out I had Hep C until 1996. I feel great. My liver is now in late-state cirrhosis. I risk liver failure because of hepatorenal syndrome (liver and kidneys fail together) within 3 days or I may have 10 years before I need a transplant, which will be doubtful because I will be 74. Please pay attention to what your doctors say. Seek a second or a third opinion. Liver failure is an unpleasant way to die. Read about it. If you don't want to be treated, take proper herbs, change your diet and stop alcohol if you drink. With love and prayers for you, Beck > > > > > > Hi everyone, > > > > > > You've prbably heard it before but,I dont know who to listen to. > > > Routine physical for life insurance. Denied because of " elevated > liver > > > function " .Go to Dr.,new town,did'nt know anyone at the time. He > > > says ,Hep c. I go to gastro,he says,biopsy. OK,I do it. He > > > says,Interferon,immediately. I say no. Send results to my > lifelong Dr > > > back home. After three weeks of hassling with him to get MY test > > > results,he finally sends them to my Dr. > > > HE says, " looks like just the veeery begining of it " > > > All levels are marginal. I go back to Dr a year later and > say " lets > > > start from scratch " We re-do blood test and they all come back > NORMAL! > > > Dr says " that does'nt mean anything " Well,maybe the original > tests > > > did'nt mean anything either! Do levels jump around like that? It > all > > > just seems so easy for the doctors and drug companies to scare > you into > > > this " treatment " that has such a poor success rate. > > > I'm a 50 yr old male,no longer using alcohol,have always eaten > > > healthyand,dont think it would be worth the trouble to take > the " cure " . > > > Any and all thoughts appreciated!! Happy New Year! Joe in > > > Nevada > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2007 Report Share Posted March 8, 2007 Hi ! Welcome aboard! My name is . My son, , has had hearing's problems since he was less than two years(ear infections, tubes placements, allergies, etc). He had a cholesteotoma surgery,about 3 yrs ago. He is having his second surgery tomorrow. As you know, the cholesteotoma surgery, per say, it's not really meant to improve hearing, but to create a safe and clean ear. The hearing may be improve or decrease by the surgery. My question is for you as a teacher who deals with hard of hearing children. My son has a lot of hearing lost on his left ear, and mild hearing lost on his right. He is a Senior, and will graduate in June. He has maintained a grade point average of 3.4 all through his High School years. I know that his hearing has diminished between the last surgery and present time. He claims he manages fine in his classroom environment, no special seating, he just tries to seat as close as possible to the teacher. I asked him how he does when he does not totally hears someone. He says he either reads lips or tries to figure out what the person is saying by the general conversation. He says about the only thing he can not manage is whispering on his "bad" ear. He does not seem too enthusiastic about a hearing aid. What is your professional opinion on that? I hope the best for your son in his surgery. Children are amazing at recover. Expect the surgery to be about 3 hours plus and have faith. He will be bouncing back in a couple of days after the surgery.! Good luck to you, and God Bless you! Regards, YoakumAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2007 Report Share Posted March 8, 2007 HI - Thanks for your words of welcome. I am very nervous about this whole process, but grateful to find a group like this where I can vent to people who truly understand! I wish you luck with your child's next surgery tomorrow! Your son sounds like he is doing very well in school- a 3.4 is impressive! When I am wearing my " teacher hat " I do try to make the case for hearing aids. The thing with hearing loss (and my perspective is that of a teacher- I don't personally have a hearing loss) is that you don't know what you don't hear. Hearing aids can reduce the strain to detect the sounds around you. It does take practice though- it's not like glasses where a person can put them on and be " cured " - voices and words sound different with the aids as new frequencies and sounds can be detected. But, many people who have them really come to rely on them for everyday use. Having said all of that, some people try them and just don't take to them. They are bothered by the increased environmental noises. People can develop great compensatory skills- like your son with lip reading- and function just fine. At his age, there is certainly a social issue- and I have probably had this exact conversation with every middle/high school student who uses aids! Hesitancy to wear aids is very typical. Check with your audiologist to see if there is a loaner aid he could try for a few months. If he is heading off to college next year, he may find hearing in large lecture halls more challenging than in a small classroom, and want the benefits of aids. A trial period would give him a chance to test them out before making a financial commitment. With his age and success in school, he's certainly compensating well. Any decision about hearing aids would require his " buy-in " - in other words, if he doesn't want to use them, or if he doesn't experience enough benefit from them, they won't be worn. I hope that helps. Good luck with your decision. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Hi Sheri: I have a question for anyone who may have an answer. My son , 17 yrs, had his second c-toma surgery today. It took a lot less than the first one (done 2 1/2 yrs ago). The doctor did not open behind his ear, but went into he ear channel. We just got home from the hospital. He seems to be doing some how better than the last time, in terms of dizziness and pain. I have a couple of concerns: 1- Being the fact that the doctor went through the ear, rather than behind the ear...did he really properly access the c-toma for removal? Don't you think that perhaps opening behind the ear is a better way to catch all those nasty cells?. The doctor did not mention before the surgery how he was going to do this, so I could not oppose to it. 2- I asked the doctor if he was going to do any kind of reconstruction for better hearing, and he said, definitely no, the only thing to do for better hearing is a hearing aid. My son has never had any reconstructive surgery. How did your son accomplishes 100 % hearing?. , my son, does not seem to really want a hearing aid. He says he manages by reading lips and by "trying to hear the whole sentence rather than the missing part of it". He is a 17 yr old senior, with a 3.4 grade average. (I am so proud of him!). I really want to respect his decisions, especially when it comes to a hearing aid. But I wonder why they could not improve his hearing any other way. This thing is always so worrisome and annoying. I hate to see him going through all these surgeries and the pain and the hospital and the iv's and everything else.They are way too young to be enduring all this suffering. I am thankful that his surgery went well, and I have to remain strong for him, but right now I just feel likes crying for him! (and, indeed, I am). Thanks for allowing me to vent. mother of my handsome AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Welcome, My son was diagnosed the month of his 6th birthday, so I know all of the fears you probably have. He's now 11 and has had 6 surgeries, but is hearing at 100% (his left ear was effected). Please feel free to ask any specific questions. What type of surgery is planned and what type of physician is doing te procedure? We used an ENT for years, but now see an excellent otologist in Nashville. Good luck and welcome to the group. Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Hi Sheri: I have a question for anyone who may have an answer. My son , 17 yrs, had his second c-toma surgery today. It took a lot less than the first one (done 2 1/2 yrs ago). The doctor did not open behind his ear, but went into he ear channel. We just got home from the hospital. He seems to be doing some how better than the last time, in terms of dizziness and pain. I have a couple of concerns: 1- Being the fact that the doctor went through the ear, rather than behind the ear...did he really properly access the c-toma for removal? Don't you think that perhaps opening behind the ear is a better way to catch all those nasty cells?. The doctor did not mention before the surgery how he was going to do this, so I could not oppose to it. 2- I asked the doctor if he was going to do any kind of reconstruction for better hearing, and he said, definitely no, the only thing to do for better hearing is a hearing aid. My son has never had any reconstructive surgery. How did your son accomplishes 100 % hearing?. , my son, does not seem to really want a hearing aid. He says he manages by reading lips and by "trying to hear the whole sentence rather than the missing part of it". He is a 17 yr old senior, with a 3.4 grade average. (I am so proud of him!). I really want to respect his decisions, especially when it comes to a hearing aid. But I wonder why they could not improve his hearing any other way. This thing is always so worrisome and annoying. I hate to see him going through all these surgeries and the pain and the hospital and the iv's and everything else.They are way too young to be enduring all this suffering. I am thankful that his surgery went well, and I have to remain strong for him, but right now I just feel likes crying for him! (and, indeed, I am). Thanks for allowing me to vent. mother of my handsome AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2007 Report Share Posted March 9, 2007 Hi Sheri- Thanks for sharing your experience with me. I actually have many questions, and I'm still just trying to process this whole thing... The doctor is a pediatric otolaryngologist at s Hopkins. I am very impressed by him so far. My son will have either the tympanoplasty or mastoidectomy- doctor won't know if he needs to go in one way or the other until he gets in there I guess. The cholesteatoma has already eroded the stapes completely. The doctor said he may remove one or both of the other bones if needed. My first question to those who have had the surgery or cared for a child who has had the surgery is what should I expect post-op? How long should I plan to keep my son home from school? What restrictions should I place on movement, playgroups, or activity? We have a day trip planned to an amusement park about 5 weeks after surgery; should I cancel it? How long until he can shower? Swim? What kind of wound care is expected? I have access to home health nursing if need be; should I arrange that now? I guess that's more than one question Just trying to get a feel for logistics. Any feedback would be appreciated! > > Welcome, > > My son was diagnosed the month of his 6th birthday, so I know all of > the fears you probably have. He's now 11 and has had 6 surgeries, but > is hearing at 100% (his left ear was effected). Please feel free to > ask any specific questions. > > What type of surgery is planned and what type of physician is doing te > procedure? We used an ENT for years, but now see an excellent > otologist in Nashville. > > Good luck and welcome to the group. > > Sheri > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi Sheri: Wish I could go to Nashville....! Do you any good one in Los Angeles? Love, AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi , I'm glad your son's surgery was easier than the last. The resiliency of children is amazing. Regarding the approach your physician took on " reaching " the cholesteatoma, I'm sure his decision was based on it's location. My son's 2nd look surgery after his first c'toma was done the same way, through the ear. His first had been with a full incision behind the ear and took over 5 hours. The second one was done 6 months after the first. Well, two years later, when the physician went in to perform a tympanoplasty, another HUGE c'toma was found, in basically the same spot. The reason was thought to have been that some cells had been left from the previous surgeries. I don't tell you this to alarm you, but confirm that your concern is valid. Are you using an ENT or otologist? Removal of EVERY cell in C'toma is essential to prevent recurrance, so experience with them is crucial. Some otologists don't even see a lot of them. Regarding my son's hearing, in his last surgery, #6, our otologist removed all of the damaged ossicles (2 of the 3) and replaced them with a titanium prosthesis. He also felt that total removal of the affected ossicles would prevent recurrance. In all of the other surgeries, they'd been " cleaned " and the damaged bone removed, leaving partial bone. We use Dr. in Nashville, who specializes in c'toma. As my son's hearing was restored to 100%, I certainly recommend him. Our goal was only total removal and no more surgery, we hadn't dreamed his hearing could be repaired. Best of luck to you and you're doing the right thing be researching this frustrating condition. God bless, Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 With my son, the recovery has been pretty painless. He's usually in pain for about 3 days, which we've been able to control with tylenol. The doctor will probably give you some antibiotics. Wound care has been leaving the initial bandage on for a few days, and then " dripping " peroxide over the wound with a cotton ball, without touching it. They can usually bath immediately, but no water on the incision for a week or so. I've actually used a large cup and washed the " good " half of my son's hair. I'd recommend a short hair cut before surgery, just so it won't look so dirty if he can't wash it for a week or two. We've always been told no physical activity for about 8 weeks, so an amusement park might be out of the question. I'm sure it will depend on the extent of the surgery. Riding fast rides or those that go high could really mess with the pressure in his ear and cause problems. They will probably shave the side of his head where they'll operate. Also, I'm sure you'll be given an antibiotic ear drop to use for a few weeks. That will also dissolved the blood deep in the ear and packing, so they'll be some drainage when he sleeps. You'll probably be instructed for him to wear a cotton ball in that ear for the period you're using drops. Good luck to you and your son. I'd certainly ask how many of these procedures you physician does annually. Our local ENT sees about 3, where our otologist sees over 350. Experience can make a HUGE difference. God Bless, Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2007 Report Share Posted March 10, 2007 Hi , Our 9 year old daughter had her first surgery about a month ago. She'll need one more. This one is to replace the damaged bones and to eliminate any remaining c-toma. Hopefully that's the last. Since I've been a member of this group, I've almost come to the realization that there may be more than the two surgeries she'll have to endure. We are trying to remain positive and hope only the two surgeries will needed. We live near L.A. and found out about "The House Ear Institute". It's on Alvarado & 3rd. Dr. Slattery is her Dr.. We are very pleased with him and confident he can eliminate the c-toma during the next surgery. All of the Dr.'s here are highly regarded. You can go to their website and read all about the place. Hopefully this helps. i444234@... wrote: Hi Sheri: Wish I could go to Nashville....! Do you any good one in Los Angeles? Love, AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. 8:00? 8:25? 8:40? Find a flick in no time with the Search movie showtime shortcut. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2007 Report Share Posted March 11, 2007 Boy, you are in the best place possible. House Ear Institute in L.A. is the #1 in the country. That's where we were going originally, but as my son couldn't fly post op, it wasn't feasible. We're about 4,000 miles from there, so days of driving. Nashville was our 2nd choice to House Ear Institute. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2007 Report Share Posted March 12, 2007 Yes, we are grateful for this. I didn't realize it was the #1 rated in the country. I do know that our Dr. did have former President Reagan as one of his patients. I guess you'd have to be pretty good to get that kind of clientele.awbsjb <keithsheri@...> wrote: Boy, you are in the best place possible. House Ear Institute in L.A. is the #1 in the country. That's where we were going originally, but as my son couldn't fly post op, it wasn't feasible. We're about 4,000 miles from there, so days of driving. Nashville was our 2nd choice to House Ear Institute. No need to miss a message. Get email on-the-go with for Mobile. Get started. Quote Link to comment Share on other sites More sharing options...
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