Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 Just to clarify, am not recommending long term use of steroids(as has described) but am reiterating info discussed with Mia last year....she has been doing this for a while with her patients(as some of you will attest) and was recently validated in this approach.... patients who suffered SUDDEN hearing loss fared MUCH better with subsequent surgery/fsr/decompression if they were placed on steroids in the interim IMMEDIATELY/ASAP and nerve was protected. Sudden hearing Loss is brought on by sudden increase in vascular insult/compression of nerve... You are reducing this very problem with steroids...he probably will even have a return of most hearing that he suddenly lost.... (am assuming you are talking about sudden hearing loss like waking up and finding a dramatic loss ). If he was my son Barbara, that is what I would be doing. R> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 When I had a sudden hearing loss, that is what the local doc did, I kind of thought that was the norm, to hit you with a steroid pack. Marie Adam > Just to clarify, am not recommending long term use of steroids(as has > described) but am reiterating info discussed with Mia last year....she has > been doing this for a while with her patients(as some of you will attest) > and was recently validated in this approach.... patients who suffered SUDDEN > hearing loss fared MUCH better with subsequent surgery/fsr/decompression if > they were placed on steroids in the interim IMMEDIATELY/ASAP and nerve was > protected. Sudden hearing Loss is brought on by sudden increase in vascular > insult/compression of nerve... You are reducing this very problem with > steroids...he probably will even have a return of most hearing that he > suddenly lost.... (am assuming you are talking about sudden hearing loss > like waking up and finding a dramatic loss ). If he was my son Barbara, that > is what I would be doing. R> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 >probably, but it was news to me and Louis docs at Westmead here in aus...true! When I had a sudden hearing loss, that is what the local doc did, I kind of > thought that was the norm, to hit you with a steroid pack. Marie > Adam > > >> Just to clarify, am not recommending long term use of steroids(as > has >> described) but am reiterating info discussed with Mia last year....she has >> been doing this for a while with her patients(as some of you will attest) >> and was recently validated in this approach.... patients who suffered > SUDDEN >> hearing loss fared MUCH better with subsequent surgery/fsr/decompression > if >> they were placed on steroids in the interim IMMEDIATELY/ASAP and nerve was >> protected. Sudden hearing Loss is brought on by sudden increase in > vascular >> insult/compression of nerve... You are reducing this very problem with >> steroids...he probably will even have a return of most hearing that he >> suddenly lost.... (am assuming you are talking about sudden hearing loss >> like waking up and finding a dramatic loss ). If he was my son Barbara, > that >> is what I would be doing. R> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 wonder how common that sudden loss is. I never experienced any loss, if had a hearing loss is was so mild I not notice. dr just took both tumors, wah lah, I am deaf. Rosemary Lee wrote: > >probably, but it was news to me and Louis docs at Westmead here in aus...true! > > When I had a sudden hearing loss, that is what the local doc did, I kind of > > thought that was the norm, to hit you with a steroid pack. Marie > > Adam > > > > > >> Just to clarify, am not recommending long term use of steroids(as > > has > >> described) but am reiterating info discussed with Mia last year....she has > >> been doing this for a while with her patients(as some of you will attest) > >> and was recently validated in this approach.... patients who suffered > > SUDDEN > >> hearing loss fared MUCH better with subsequent surgery/fsr/decompression > > if > >> they were placed on steroids in the interim IMMEDIATELY/ASAP and nerve was > >> protected. Sudden hearing Loss is brought on by sudden increase in > > vascular > >> insult/compression of nerve... You are reducing this very problem with > >> steroids...he probably will even have a return of most hearing that he > >> suddenly lost.... (am assuming you are talking about sudden hearing loss > >> like waking up and finding a dramatic loss ). If he was my son Barbara, > > that > >> is what I would be doing. R> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 Hi Rosemary, I don't think anyone thought you were recommending long term steroid use for hearing preservation. What you describe is exactly how and why we started for me. It is a slippery slope that worked wonders the first time. The " protection " provided to the nerve only goes so far and it is pretty darn easy to find yourself on a road you can't turn back on. I know Barbara has already seen me share my experience with steroids and would take caution towards long term use for Adam. It seemed she was just looking for info on decompressions, so I didn't chime in on steroids. When you say, " fared MUCH better, " was Mia speaking towards hearing levels directly after treatment, over longer time, or to overall physical health? Were any of the " patients " teens? How many teens have been through a decompression and made it to their twenties with useable hearing intact? Those are the questions I'd be asking a surgeon thinking about pursuing decompression for my son. Barbara, Sorry I can't shed light on decompression. The risks from a decompression for me were far greater than any benefit that may have come from it, so that was not the right way to go for me at that time. But my tumor on the remaining side (the better hearing side that was experiencing the sudden hearing losses overnight and increasing tinnitus) was a lot larger than the side that went deaf first. I had had my first surgery a little before the sudden hearing losses started, and even though the surgery went great I could not imagine risking the only hearing I had left with another surgery. That was my frame of mind then. My Mom's frame of mind was to keep me out of surgery, if possible, to keep me strong. Just one of the lessons I picked up from her. Oh--one other thing I just thought of: my ENT gave my ears one of the thoroughest cleanings I've had (it hurt...) after I started with sudden losses. That was a step even before steroids were pursued, I think. You can also use hydrogen peroxide at home. Sometimes the fullness for me was due to wax build up. (I don't know why it was so heavy at times, it was really alarming sometimes... no infection, just wax buildups.) The hydrogen peroxide loosens things up over several minutes. Sometimes I was lucky that it was just wax, other times we had to increase my prednisone dosage. I am reaching for anything that may help. You probably already know all that. Please give Adam lots of hugs for me. I will keep both of you in my thoughts. Hugs, Rosemary Lee wrote: > > Just to clarify, am not recommending long term use of steroids(as has > described) but am reiterating info discussed with Mia last year....she has > been doing this for a while with her patients(as some of you will attest) > and was recently validated in this approach.... patients who suffered SUDDEN > hearing loss fared MUCH better with subsequent surgery/fsr/decompression if > they were placed on steroids in the interim IMMEDIATELY/ASAP and nerve was > protected. Sudden hearing Loss is brought on by sudden increase in vascular > insult/compression of nerve... You are reducing this very problem with > steroids...he probably will even have a return of most hearing that he > suddenly lost.... (am assuming you are talking about sudden hearing loss > like waking up and finding a dramatic loss ). If he was my son Barbara, that > is what I would be doing. R> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2003 Report Share Posted January 29, 2003 It seemed she was just > looking for info on decompressions, so I didn't chime in on > steroids. Probably. Yes. When you say, " fared MUCH better, " was Mia speaking > towards hearing levels directly after treatment, over longer time, > or to overall physical health? Were any of the " patients " teens? > How many teens have been through a decompression and made it to > their twenties with useable hearing intact? Those are the > questions I'd be asking a surgeon thinking about pursuing > decompression for my son. I wasn't advocating decompression, know nothing about it, just in case you thought I was(although don't think so) Certainly when Mia told me about her use of steroids to stabilise/protect from this sudden " vascular insult " (her words) it was news to me, or perhaps I just understood something more...had never really understood why people could suddenly wake up deaf .. Understanding how/why with stable mris, showing no tumor growth, you can suddenly lose function and how it then becomes immediately important to reduce this effect of compression on nerve quickly with steroids, and thereby protect nerve form furhter insult , and get a better outcome when whatever treatment has been decided on. Can't answer your other questions, it wasn't a study presented to me, just a comment made. Partly my reaction is because I have had a similar warning from Louis' doc here....ie, just because his tumor is stable does not mean he may not wake up one day with a dramatic decrease in vision... similarly because of the vagaries/fluctuations of vasculature, and just having a tumor there..growing or not. It kind of hit me...my focus has been on stabilising tumor growth...you know, stop that tumor, and all is ok.... have now realised that this is not enough. Sorry for stating the obvious, sometimes the obvious is hard for me to truly grasp. > > Barbara, Sorry I can't shed light on decompression. The risks from > a decompression for me were far greater than any benefit that may > have come from it, so that was not the right way to go for me at > that time. But my tumor on the remaining side (the better hearing > side that was experiencing the sudden hearing losses > overnight and increasing tinnitus) was a lot larger than the side > that went deaf first. I had had my first surgery a > little before the sudden hearing losses started, and even though > the surgery went great I could not imagine risking the only > hearing I had left with another surgery. That was my frame of > mind then. My Mom's frame of mind was to keep me out of surgery, > if possible, to keep me strong. Just one of the lessons I picked > up from her. > > Oh--one other thing I just thought of: > my ENT gave my ears one of the thoroughest cleanings I've > had (it hurt...) after I started with sudden losses. That was a > step even before steroids were pursued, I think. You can also use > hydrogen peroxide at home. Sometimes the fullness for me was due to > wax build up. (I don't know why it was so heavy at times, it > was really alarming sometimes... no infection, just wax buildups.) > The hydrogen peroxide loosens things up over several minutes. > Sometimes I was lucky that it was just wax, other times we had to > increase my prednisone dosage. I am reaching for anything that > may help. You probably already know all that. > > Please give Adam lots of hugs for me. I will keep both of you in > my thoughts. Hugs, > > Rosemary Lee wrote: >> >> Just to clarify, am not recommending long term use of steroids(as has >> described) but am reiterating info discussed with Mia last year....she has >> been doing this for a while with her patients(as some of you will attest) >> and was recently validated in this approach.... patients who suffered SUDDEN >> hearing loss fared MUCH better with subsequent surgery/fsr/decompression if >> they were placed on steroids in the interim IMMEDIATELY/ASAP and nerve was >> protected. Sudden hearing Loss is brought on by sudden increase in vascular >> insult/compression of nerve... You are reducing this very problem with >> steroids...he probably will even have a return of most hearing that he >> suddenly lost.... (am assuming you are talking about sudden hearing loss >> like waking up and finding a dramatic loss ). If he was my son Barbara, that >> is what I would be doing. R> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Subject: Re: Adam They would do th same with me, only it would be increasing the steroids, as I was on them daily for just over 5 years, and I've gotten alot of weight to show for it. Sheryn _________ > When I had a sudden hearing loss, that is what the local doc did, I kind of > thought that was the norm, to hit you with a steroid pack. Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2003 Report Share Posted January 30, 2003 Subject: Re: Adam They would do th same with me, only it would be increasing the steroids, as I was on them daily for just over 5 years, and I've gotten alot of weight to show for it. Sheryn _________ > When I had a sudden hearing loss, that is what the local doc did, I kind of > thought that was the norm, to hit you with a steroid pack. Marie Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.