Guest guest Posted November 21, 2008 Report Share Posted November 21, 2008 Yes, I am seeing a rheumatologist, and all anti inflammatories have not worked we are now taking a high dose of Pedizone to help pain and inflammation along with tramadol. We are trying to put this in remission because I am a single Mom and I work 40+ hrs a week. Thank you so much for responding to my text keep in touch. " susanhennon " <susanhennon@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2008 Report Share Posted November 22, 2008 , prednisone is not a long-term solution. It can be every bit as dangerous (or more so) than the other drugs. Has your rheumy discussed taking any of the disease-modifying drugs like methotrexate, Enbrel, Humira, or Remicade? best regards, sherry z Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2008 Report Share Posted November 23, 2008 I also have had to be honest with my kids and on the bad days I tell them there are things I can't do. They still think it's fun to help with chores, so they're adapting pretty well. " susanhennon " <susanhennon@...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2008 Report Share Posted November 25, 2008 Sherry, thank you so much for your response. This prednisone is not a long prescription he (my rheumy) is trying to elevate the pain and increase my mobility that I lost in this flair up. We are in touch with one another every other day to monitor the progress or lack there of. This is extremely frightening because I am not getting better this time. I will be speaking with him tomorrow and hopefully we can try something else. Thank you again I will keep you informed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 For my first surgery, I waited from August to January. Months are usually okay .... years no. angel vice wrote: > > Hello all, > I am wondering if laying my head on a hot heating pad is ok. When it > is really bothering me I lay with my ear that is affected on my > heating pad. It really seems to help. My concern is that it will > create a bigger problem than I already have. The other question I > have is about how long from diagnosis to surgery should it be. My > docter is talking end of feb. and I am concerned that that is a long time > > thank you > angel > > > > > From: Captain Definder <captaindefinder@...> > Subject: Re: Re: Just diagnosed yesterday > cholesteatoma > Date: Tuesday, December 16, 2008, 7:52 AM > > it is better to be safe than sorry - but it sounds normal - take care > > ------------------------------------------------------------------------ > *From:* WW Chew <ww_chew (DOT) com> > *To:* cholesteatoma > *Sent:* Monday, December 15, 2008 9:54:07 PM > *Subject:* Re: Just diagnosed yesterday > > I had my c-toma removed one week ago. > At first, i presumed the discharged from my ear is blood. But > recently, i dont think so because the liquid is getting brown > in color and smelly. > > Im thinking of shall i rush back to my ent before the appointment > date 3 days later. > > > > > > -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 thank you so much--- On Tue, 12/16/08, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 In my case, it needed to be done right away. I'm sure it all depends on the severity or size of tumor. My Dr wanted it done quickly. If your Dr isn't pressed to do it right away, you might take this time to get a second opinion, just to ease your mind on how long to wait. Also, since you seem to have time to spare, if you have other methods you wish to try first, this would be a great opportunity. How great would it be to clear it up on your own and have the Dr tell you it's not there anymore! Personally, I wouldn't think using a heating pad would cause harm. Heat or cold applications work wonders for alleviating pain. When I had pain before I was diagnosed, I've found out that it was probably due to an infection flare up. Are you addressing a possible infection? > > From: Captain Definder <captaindefinder@...> > Subject: Re: Re: Just diagnosed yesterday > cholesteatoma > Date: Tuesday, December 16, 2008, 7:52 AM > > > > > > > > > it is better to be safe than sorry - but it sounds normal - take care > > > > > > From: WW Chew <ww_chew (DOT) com> > cholesteatoma > Sent: Monday, December 15, 2008 9:54:07 PM > Subject: Re: Just diagnosed yesterday > > > > > > > > I had my c-toma removed one week ago. > At first, i presumed the discharged from my ear is blood. But recently, i dont think so because the liquid is getting brown in color and smelly. > > Im thinking of shall i rush back to my ent before the appointment date 3 days later. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2010 Report Share Posted June 1, 2010 My husband is 45 and has had this removed three times. It was so bad that many of the bones in his ears were deteiorated. It is necessary to get it removed ASAP so it doesn't cause hearing loss. My husband has severe hearing loss due to the fact we didn't know he had this for so long. Good luck and ask lots of questions from your doctor. From: rachel_benet <rachel_benet@...>cholesteatoma Sent: Tue, June 1, 2010 10:19:46 AMSubject: recently diagnosed hi im 25 and in december got diagnosed with a choleatoma..i ad no explantion of this and was told id need surgery... iv ad a cat scan and my consultant as said the op will go ahead in 2/3 months the only information i no about this is what iv read online..my consultant did say i ad a nasty lookin one fron putting a micro camera in my ear and seeing it. id like to no if anyone else as gone threw it without actually knowing what it is... like i said the drainage is constant im wiping my ear anything up to 20/30 times aday yet i havent ad any pain from it really... i panic about having a bath as iv heard water makes it worse yet i wasnt told to prevent water from goin into my ear... i am jus very confused and any information would be a great help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2010 Report Share Posted June 1, 2010 I was also scared when I was told I had a c-toma. I researched things online so that I could learn more about relieving symptoms and all of that. My Dr. has told me I could swim but I have to use a plug in that ear...I also have to have it plugged when showering...I am not allowed to get it wet at all. I do know that a c-toma is very slow growing type of tumor...it can do quite a bit of damage as well. My first surgery was almost 13 hours long because of how big it was and because they were not able to remove it in one piece so they attempted to get as much out as they possibly could...my ear has always drained but off and on (post surgery)...I haven't had pain until recently for some reason. The past few weeks have been terrible for me...I have a pretty high tolerance to pain but this is bad and even having my hair on my ear is painful at this point. I am on another run of antibiotics...hopefully that will clear the infection so I can have some sort of procedure done...everyone has a different story and while research can give you a foundation of knowledge just talking to others who have been through this seems more informational for me personally. Best of luck to you! On Tue, Jun 1, 2010 at 8:19 AM, rachel_benet <rachel_benet@...> wrote: hi im 25 and in december got diagnosed with a choleatoma..i ad no explantion of this and was told id need surgery... iv ad a cat scan and my consultant as said the op will go ahead in 2/3 months the only information i no about this is what iv read online..my consultant did say i ad a nasty lookin one fron putting a micro camera in my ear and seeing it. id like to no if anyone else as gone threw it without actually knowing what it is... like i said the drainage is constant im wiping my ear anything up to 20/30 times aday yet i havent ad any pain from it really... i panic about having a bath as iv heard water makes it worse yet i wasnt told to prevent water from goin into my ear... i am jus very confused and any information would be a great help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 I hope your pain goes away soon. I’m curious how many others have been told to WEAR AN EAR PLUG DURING SWIMMING? My daughter has dad two c-toma’s removed and the doctor said it was o.k. To swim without a plug???? Thanks, Cheryl On 6/1/10 8:03 PM, " Jenni " <moonshadow2447@...> wrote: I was also scared when I was told I had a c-toma. I researched things online so that I could learn more about relieving symptoms and all of that. My Dr. has told me I could swim but I have to use a plug in that ear...I also have to have it plugged when showering...I am not allowed to get it wet at all. I do know that a c-toma is very slow growing type of tumor...it can do quite a bit of damage as well. My first surgery was almost 13 hours long because of how big it was and because they were not able to remove it in one piece so they attempted to get as much out as they possibly could...my ear has always drained but off and on (post surgery)...I haven't had pain until recently for some reason. The past few weeks have been terrible for me...I have a pretty high tolerance to pain but this is bad and even having my hair on my ear is painful at this point. I am on another run of antibiotics...hopefully that will clear the infection so I can have some sort of procedure done...everyone has a different story and while research can give you a foundation of knowledge just talking to others who have been through this seems more informational for me personally. Best of luck to you! On Tue, Jun 1, 2010 at 8:19 AM, rachel_benet <rachel_benet@...> wrote: hi im 25 and in december got diagnosed with a choleatoma..i ad no explantion of this and was told id need surgery... iv ad a cat scan and my consultant as said the op will go ahead in 2/3 months the only information i no about this is what iv read online..my consultant did say i ad a nasty lookin one fron putting a micro camera in my ear and seeing it. id like to no if anyone else as gone threw it without actually knowing what it is... like i said the drainage is constant im wiping my ear anything up to 20/30 times aday yet i havent ad any pain from it really... i panic about having a bath as iv heard water makes it worse yet i wasnt told to prevent water from goin into my ear... i am jus very confused and any information would be a great help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 I have had two surgerys and am allowed to swim without plugs - everyone is a little different. From: Cheryl Mathews <cmathews4@...>cholesteatoma Sent: Wed, June 2, 2010 8:31:37 AMSubject: Re: recently diagnosed I hope your pain goes away soon. I’m curious how many others have been told to WEAR AN EAR PLUG DURING SWIMMING? My daughter has dad two c-toma’s removed and the doctor said it was o.k. To swim without a plug????Thanks,CherylOn 6/1/10 8:03 PM, "Jenni " <moonshadow2447@ gmail.com> wrote: I was also scared when I was told I had a c-toma. I researched things online so that I could learn more about relieving symptoms and all of that. My Dr. has told me I could swim but I have to use a plug in that ear...I also have to have it plugged when showering... I am not allowed to get it wet at all. I do know that a c-toma is very slow growing type of tumor...it can do quite a bit of damage as well. My first surgery was almost 13 hours long because of how big it was and because they were not able to remove it in one piece so they attempted to get as much out as they possibly could...my ear has always drained but off and on (post surgery)...I haven't had pain until recently for some reason. The past few weeks have been terrible for me...I have a pretty high tolerance to pain but this is bad and even having my hair on my ear is painful at this point. I am on another run of antibiotics. ..hopefully that will clear the infection so I can have some sort of procedure done...everyone has a different story and while research can give you a foundation of knowledge just talking to others who have been through this seems more informational for me personally. Best of luck to you!On Tue, Jun 1, 2010 at 8:19 AM, rachel_benet <rachel_benet@ .co. uk> wrote: hi im 25 and in december got diagnosed with a choleatoma.. i ad no explantion of this and was told id need surgery... iv ad a cat scan and my consultant as said the op will go ahead in 2/3 months the only information i no about this is what iv read online..my consultant did say i ad a nasty lookin one fron putting a micro camera in my ear and seeing it. id like to no if anyone else as gone threw it without actually knowing what it is... like i said the drainage is constant im wiping my ear anything up to 20/30 times aday yet i havent ad any pain from it really... i panic about having a bath as iv heard water makes it worse yet i wasnt told to prevent water from goin into my ear... i am jus very confused and any information would be a great help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2010 Report Share Posted June 2, 2010 my husband is suppose to wear ear plugs every time he is in the water. We had to get special ones made after his surgeries. From: Cheryl Mathews <cmathews4@...>cholesteatoma Sent: Wed, June 2, 2010 8:31:37 AMSubject: Re: recently diagnosed I hope your pain goes away soon. I’m curious how many others have been told to WEAR AN EAR PLUG DURING SWIMMING? My daughter has dad two c-toma’s removed and the doctor said it was o.k. To swim without a plug????Thanks,CherylOn 6/1/10 8:03 PM, "Jenni " <moonshadow2447@ gmail.com> wrote: I was also scared when I was told I had a c-toma. I researched things online so that I could learn more about relieving symptoms and all of that. My Dr. has told me I could swim but I have to use a plug in that ear...I also have to have it plugged when showering... I am not allowed to get it wet at all. I do know that a c-toma is very slow growing type of tumor...it can do quite a bit of damage as well. My first surgery was almost 13 hours long because of how big it was and because they were not able to remove it in one piece so they attempted to get as much out as they possibly could...my ear has always drained but off and on (post surgery)...I haven't had pain until recently for some reason. The past few weeks have been terrible for me...I have a pretty high tolerance to pain but this is bad and even having my hair on my ear is painful at this point. I am on another run of antibiotics. ..hopefully that will clear the infection so I can have some sort of procedure done...everyone has a different story and while research can give you a foundation of knowledge just talking to others who have been through this seems more informational for me personally. Best of luck to you!On Tue, Jun 1, 2010 at 8:19 AM, rachel_benet <rachel_benet@ .co. uk> wrote: hi im 25 and in december got diagnosed with a choleatoma.. i ad no explantion of this and was told id need surgery... iv ad a cat scan and my consultant as said the op will go ahead in 2/3 months the only information i no about this is what iv read online..my consultant did say i ad a nasty lookin one fron putting a micro camera in my ear and seeing it. id like to no if anyone else as gone threw it without actually knowing what it is... like i said the drainage is constant im wiping my ear anything up to 20/30 times aday yet i havent ad any pain from it really... i panic about having a bath as iv heard water makes it worse yet i wasnt told to prevent water from goin into my ear... i am jus very confused and any information would be a great help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 Good morning all. I am 30 and was recently diagnosed with RA. I just had a baby 3 months ago and developed pain in my feet while pregnant, that I thought was due to all the swelling I had. Then after I gave birth, my hands started to hurt too. Needless to say I have been to two Rheumatologists and they think I have mild RA. I was diagnosed with MS in 2008, so this is my second autoimmune disease, lucky me! One of the Rheumatologists wanted me to start Methotrexate and the other gave me some Prednisone and another medicine that has no side effects and is pretty mild. I can't see taking Methotrexate with all the side effects at this point.... What has been everyone else's experiences with this drug???? Thanks for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 I've been on mtx for 11 years now, my only side effect is thinning hair on top, not too bad a price for getting my life back. in PA On Tue, Dec 28, 2010 at 11:56 AM, <khunyadicha@...> wrote: > > > Good morning all. > I am 30 and was recently diagnosed with RA. I just had a baby 3 months ago > and developed pain in my feet while pregnant, that I thought was due to all > the swelling I had. Then after I gave birth, my hands started to hurt too. > Needless to say I have been to two Rheumatologists and they think I have > mild RA. I was diagnosed with MS in 2008, so this is my second autoimmune > disease, lucky me! One of the Rheumatologists wanted me to start > Methotrexate and the other gave me some Prednisone and another medicine that > has no side effects and is pretty mild. I can't see taking Methotrexate with > all the side effects at this point.... What has been everyone else's > experiences with this drug???? > Thanks for your help! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 I wouldn't be without my MTX for anything. It really makes a difference for me. Dang it ! I am so unhappy for you that have both MS and RA. That is really a huge double whammy. Everything that I have learned in here or read elsewhere says to treat aggressively and early so the disease can be slowed or arrested. Although MTX made me somewhat nauseous for 2-3 days in the first many weeks that I was on it, it no longer does at ALL I am pleased to say. I am on a low dose so far at only 2.3mgs a week. It has the distinction of having been in use for ( I think ) over 2 decades, so they know what the drug does and doesn't do. " The devil you know.... " applies I think. in SC Good morning all. I am 30 and was recently diagnosed with RA. I just had a baby 3 months ago and developed pain in my feet while pregnant, that I thought was due to all the swelling I had. Then after I gave birth, my hands started to hurt too. Needless to say I have been to two Rheumatologists and they think I have mild RA. I was diagnosed with MS in 2008, so this is my second autoimmune disease, lucky me! One of the Rheumatologists wanted me to start Methotrexate and the other gave me some Prednisone and another medicine that has no side effects and is pretty mild. I can't see taking Methotrexate with all the side effects at this point.... What has been everyone else's experiences with this drug???? Thanks for your help! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2010 Report Share Posted December 28, 2010 Chris- I have been lucky with the MS as my only symptom is extreme tiredness, but I have been dealing with the tiredness since I was 14, so I am used to it at this point, though having a newborn does make it a little more challenging! I was bedridden for 14 weeks during my pregnancy with extreme nausea and vomiting, so hearing that as a side effect of MTX is terrible!!! Nausea is the worst!!! I am most worried about what would happen if I got pregnant again on MTX, that it would cause a miscarriage or major birth defects. My decision to not take it is only for this reason. I do plan to get pregnant and will hopefully begin trying again in the Summer. No sense in starting medicine I will have to stop for a few months before I begin trying. My plan is to start if necessary after my second baby..... Thanks so much for sharing your experience with me!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2010 Report Share Posted December 29, 2010 IMO, it's something that you need to figure out. I don't like the side effects of ANY of the medicines I'm on; however, we are going to have this disease for the rest of our lives. I was diagnosed when my daughter was 1, and then had another daughter. It is VERY hard to carry for children with symptoms. Many days, I almost dropped my children, because something gave out, and many days I had a hard time putting my daughter in a crib. I am now thankful she is in a bed, because I still can't lift her many days. I still have problems dressing them and myself. Hopefully my meds will get figured out. Anyway, my long point, is that you need to function as a mom. You need to take something that will help you do that. I personally would love to take no meds. That's not reality. I am at the point where I just don't want any more pain, and I want to have a life, and give my kids a mom. I hope this was helpful. Missie-PA > > Good morning all. > I am 30 and was recently diagnosed with RA. I just had a baby 3 months ago and developed pain in my feet while pregnant, that I thought was due to all the swelling I had. Then after I gave birth, my hands started to hurt too. > Needless to say I have been to two Rheumatologists and they think I have mild RA. I was diagnosed with MS in 2008, so this is my second autoimmune disease, lucky me! One of the Rheumatologists wanted me to start Methotrexate and the other gave me some Prednisone and another medicine that has no side effects and is pretty mild. I can't see taking Methotrexate with all the side effects at this point.... What has been everyone else's experiences with this drug???? > Thanks for your help! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2010 Report Share Posted December 29, 2010 , I think you feel the same as most of us did in the beginning. I for one was terrified of most drugs. Now I have been through several of them. Some were life savers and some had side effects I couldn't tolerate. You really won't know until you try them since we are all so individual. Have they mentioned Plaquenil to you? I don't know if that is something you can take with the MS but it is usually one of the drugs they like to start out with if you aren't comfortable with methotrexate at this point. Never hurts to ask. Sorry to hear you are going through this along with MS. There are several of us with multiple auto immune disease. Glad you found us. > > Good morning all. > I am 30 and was recently diagnosed with RA. I just had a baby 3 months ago and developed pain in my feet while pregnant, that I thought was due to all the swelling I had. Then after I gave birth, my hands started to hurt too. > Needless to say I have been to two Rheumatologists and they think I have mild RA. I was diagnosed with MS in 2008, so this is my second autoimmune disease, lucky me! One of the Rheumatologists wanted me to start Methotrexate and the other gave me some Prednisone and another medicine that has no side effects and is pretty mild. I can't see taking Methotrexate with all the side effects at this point.... What has been everyone else's experiences with this drug???? > Thanks for your help! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 , Thanks so much for your reply! My doc actually did prescribe Plaquenil and I have been taking it along with steroids. I do feel a little better, but I think it is the steroids that are helping. The Dr. said the Plaquenil will take a bit of time to work.... > > , > > I think you feel the same as most of us did in the beginning. I for one was terrified of most drugs. Now I have been through several of them. Some were life savers and some had side effects I couldn't tolerate. You really won't know until you try them since we are all so individual. Have they mentioned Plaquenil to you? I don't know if that is something you can take with the MS but it is usually one of the drugs they like to start out with if you aren't comfortable with methotrexate at this point. Never hurts to ask. Sorry to hear you are going through this along with MS. There are several of us with multiple auto immune disease. Glad you found us. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Missie- Thanks for the honesty. I needed to hear all of that!!! I am currently taking Plaquenil and steroids and I am starting to feel a little better. Still going to hold out on the MTX until baby #2, unless something happens before then to really force me to take it. I thought it was hard dealing with having MS, but having RA is so much worse!!! Hopefully you are feeling good!!! > > IMO, it's something that you need to figure out. I don't like the side effects of ANY of the medicines I'm on; however, we are going to have this disease for the rest of our lives. I was diagnosed when my daughter was 1, and then had another daughter. It is VERY hard to carry for children with symptoms. Many days, I almost dropped my children, because something gave out, and many days I had a hard time putting my daughter in a crib. I am now thankful she is in a bed, because I still can't lift her many days. I still have problems dressing them and myself. Hopefully my meds will get figured out. > Anyway, my long point, is that you need to function as a mom. You need to take something that will help you do that. I personally would love to take no meds. That's not reality. I am at the point where I just don't want any more pain, and I want to have a life, and give my kids a mom. > I hope this was helpful. > Missie-PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 , My Plaquenil took about 6 months to start working really well. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 Hi Dorothy, I am your age and have had two cholesteatoma surgeries in my right ear. My first surgery I was in a state of disequalibrium and was functioning but not so great - I was scared to death to have the surgery but it made a huge improvement in my quality of life. I was left with little to no hearing in that ear after the first surgery but the second surgery I received a titanium prosthesis and that has made a great improvement in hearing. I layed around for the first 2 or 3 days and then felt well enough to start moving about more normally (I still took it easy for about 1 week) - like I said before the first surgery I had major dizziness, etc. and after surgery the dizziness improved each day significantly from before. Right after surgery it will be difficult to open your mouth wide and a little difficult to chew food (I would pry the fork into my mouth and eat slowly), your ear will feel numb for several months, your ear will drain for a couple of weeks, I didn't have the ringing issues (so not sure if that will totally go away), I did not have pain after surgery (never needed pain pills). Your age should not slow your recovery down - children with cholesteatomas bounce back quicker than adults but I would say it is because we are a little more knowledgeable. Take Care and Keep Me Posted on Your Outcome! From: Dorothy <drott613@...>cholesteatoma Sent: Sun, January 30, 2011 3:20:07 PMSubject: Recently diagnosed I have been recently diagnosed with ear canal cholesteatoma, after one primary Doc, 3 ENT's and an ear specialist. It has been a long haul. I have had this earache now for 9 months. The last visit to my doctor was very painful and since then, as of the last 2 weeks, the pain in my right ear has gotten worse, the fullness and pressure I feel near my right ear going down into my jaw area has increased by double, at least, the ringing in my ear has went from now and then to constantly in just the last week... the dizziness (vertigo) has also gotten worse in severity and longer in duration. They have scheduled surgery for Feb. 24th, I have already had 2 ct scans, and some other stuff done in prep for the operation. I am nervous to say the least about what to expect, and now that it seems to be progressing, I am worried what the real damage is going to be once they get in there. This ringng is really starting to get to me, as of today. It is louder and more bothersome than ever. And the pain is worse too. I am allergic to many pain meds so all I can take is something that I only take at night because it is so strong. During the day I have just been dealing with it but today it hurts worse than ever. Also, I am 45 years old and worried that my recovery time is going to be longer because of my age. I don't have much help and I have a seven year old. This is debillitating sometimes, putting me in bed or on the couch whether I like it or not. Any women out there my age, or anybody out there my age, that is going or has went through this? Any advice would be appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2011 Report Share Posted January 31, 2011 Captain Definder <captaindefinder@...> wrote: >Hi Dorothy, > >I am your age and have had two cholesteatoma surgeries in my right ear. My >first surgery I was in a state of disequalibrium and was functioning but not so >great - I was scared to death to have the surgery but it made a huge improvement >in my quality of life. I was left with little to no hearing in that ear after >the first surgery but the second surgery I received a titanium prosthesis and >that has made a great improvement in hearing.  I layed around for the first 2 or >3 days and then felt well enough to start moving about more normally (I still >took it easy for about 1 week) - like I said before the first surgery I had >major dizziness, etc. and after surgery the dizziness improved each day >significantly from before. Right after surgery it will be difficult to open >your mouth wide and a little difficult to chew food (I would pry the fork into >my mouth and eat slowly), your ear will feel numb for several months, your ear >will drain for a couple of weeks, I didn't have the ringing issues (so not sure >if that will totally go away), I did not have pain after surgery (never needed >pain pills).  Your age should not slow your recovery down - children with >cholesteatomas bounce back quicker than adults but I would say it is because we >are a little more knowledgeable. Take Care and Keep Me Posted on Your Outcome! > > > > > > >________________________________ >From: Dorothy <drott613@...> >cholesteatoma >Sent: Sun, January 30, 2011 3:20:07 PM >Subject: Recently diagnosed > > >I have been recently diagnosed with ear canal cholesteatoma, after one primary >Doc, 3 ENT's and an ear specialist. It has been a long haul. I have had this >earache now for 9 months. The last visit to my doctor was very painful and since >then, as of the last 2 weeks, the pain in my right ear has gotten worse, the >fullness and pressure I feel near my right ear going down into my jaw area has >increased by double, at least, the ringing in my ear has went from now and then >to constantly in just the last week... the dizziness (vertigo) has also gotten >worse in severity and longer in duration. They have scheduled surgery for Feb. >24th, I have already had 2 ct scans, and some other stuff done in prep for the >operation. I am nervous to say the least about what to expect, and now that it >seems to be progressing, I am worried what the real damage is going to be once >they get in there. This ringng is really starting to get to me, as of today. It >is louder and more bothersome than ever. And the pain is worse too. I am >allergic to many pain meds so all I can take is something that I only take at >night because it is so strong. During the day I have just been dealing with it >but today it hurts worse than ever. Also, I am 45 years old and worried that my >recovery time is going to be longer because of my age. I don't have much help >and I have a seven year old. This is debillitating sometimes, putting me in bed >or on the couch whether I like it or not. Any women out there my age, or anybody >out there my age, that is going or has went through this? Any advice would be >appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
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