Re: Re:I love to read your posts

[Guest guest]

Hi Phil,

It is amazing how you've been able to cope with those symptoms. I know people do what they have to do, but it is just so hard to live with that... The brain is an amazing organ, and it can adjust remarkably well when necessary, still must be a feat getting through your day without throwing up or falling down.

I don't know if the spinning was always in the same direction. I was usually dozing off when it happened, but I think my head was always slightly turned to the left and I was lying on my back. Since I never attributed this to anything and certainly never to my ears, I never took note of exactly what motion I was having... What you describe with the eyes is "nystagmus". I haven't had this symptom since the surgery, and I know they patched the "horizontal semi circular canal", so I don't expect I'll get that back either as long as the patch holds... they put a "free graft" of "temporalis fascia" on it... Does that make any sense to you? Could that come loose because it is a free graft? I do hope it is sealed permanently. As far as balance, I tend to walk into things, and usually to my right side... which is the side my ear is affected, and when walking with someone I tend to walk against them, if they are on my right. I don't know if this has anything to do with it, but it is embarassing sometimes when I walk into things.

Lynn

Re: strange ear symptom post c-toma...help!

Phil, at what point did you have your radical mastoidectomy, was it your last surgery? It is discouraging to read about what you've been through. You seem to handle it so well. Did the facial paralysis clear up? Do you still have problems with your balance?

Thanks for sharing

Lynn

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

Phil

[Guest guest]

Hi Lynn

That spinning business is very interesting. I remember like being stuck on one of those playground roundabouts when the older kids come along and spin it way too fast. Did you notice that the spinning always went in the same direction - away from the infected ear. I since learnt that this is because the labyrinth sends signals to brain which control the eye movements. The left side labyrinth pushes the eye to the right and vice versa. The only one working labyrinth you end up stumbling to towards the weaker side. It gets even more complex - the brain registers this problem and counteracts by throwing your eye movement back towards to the stronger side. This is what causes vertigo and all the rest of it. I got better at standing and walking by visual concentration (with closed eyes is still difficult to determine any space at all) and the situation was always worse when more than two dimensions were involved, standing on the stairs or walking along a street with people moving in many different directions. It amazed me - been standing up for years and never given it a second thought.

I don't really know why some people get more dramatic symptoms than others, perhaps just the direction the c-toma moves in and the amount of infection that gets in there. I was probably more susceptible by having two c-tomas in the same ear at the same time.

Glad your feeling better

Phil

Re: strange ear symptom post c-toma...help!

Phil, at what point did you have your radical mastoidectomy, was it your last surgery? It is discouraging to read about what you've been through. You seem to handle it so well. Did the facial paralysis clear up? Do you still have problems with your balance?

Thanks for sharing

Lynn

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

Phil

[Guest guest]

Hi ,

Isn't Phil an amazing writer.... I really enjoy reading his stuff too.

As for your question, I had a fistula in the " horizontal semicircular

canal " , and a " dehisced " facial nerve (I think that means there was no more

protective covering on the nerve). From my understanding of my OR report I

had a " canal wall down mastoidectomy and a meatoplasty " . I think it was a

" modified radical mastoidectomy " , but I am not sure. The surgeon patched

the fistula with " fascia " , and I don't seem to have any episodes of

dizzyness anymore. But my dizzyness was a piece of cake compared to what

Phil describes. Mine lasted only moments and stopped with a change of

position. One thing though, my eyes were always closed when it happened. I

never once associated these dizzy spells with my ears until after the

surgery.

I had surgery in Feb this year, but only a tympanotomy, and that is when

the c-toma was found much to the surprise of my surgeon. I did not have any

of the classic symptoms, and I had never mentioned the dizzyness. Anyway,

the mastoid wall down surgery was May 3rd this year. Anyway no dizzyness

after surgery at all. The surgeon told me that he got all the c-toma, and I

expect that he did... It is too soon to have a reoccurence, and I don't

think I will have one, cause my ears have always been dry.

Hope this helps.

Lynn

Re: strange ear symptom post

> c-toma...help!

> >

> >

> > Phil, at what point did you have your radical mastoidectomy,

> was it your last surgery? It is discouraging to read about what

> you've been through. You seem to handle it so well. Did the facial

> paralysis clear up? Do you still have problems with your balance?

> >

> > Thanks for sharing

> > Lynn

> > I had some similar discomfort to yours (and a similar

> preconditon ie a non-functioning ear with no ossicles) which for years

> I tried to alleviate using using an antibiotic spray from my local

> doctor. By the time I got to surgery I'd begun to develop extra, more

> disabling symptoms (like headaches, facial paralysis and balance loss).

> > Phil

> >

> >

[Guest guest]

Thanks for the link Phil,

I was thinking a "free graft" was one where they just put the graft in place and expect it to just stay there, without anything holding it down... so I guess it leaves room for it to shift or disloge. I hate to hear that it tore open on you. Mine is on the semicircular canal, and hopefully it stays there... I guess I will have to be aware of the vertigo starting again, that might alert me to that happening.

I wouldn't exactly call what I do walking toward the right side as stumbling, except when I walk into walls... It is like I misjudge the wall's position in relationship to mine. I don't do it all the time, but enough that I do notice that I do that. These symptoms are really trivial though, compared to what you describe. Just being aware of them though is good, in case they get worse... something to gage the severity by...

It is always nice discussing with you. What kind of work do you do?

Lynn

Re: strange ear symptom post c-toma...help!

Phil, at what point did you have your radical mastoidectomy, was it your last surgery? It is discouraging to read about what you've been through. You seem to handle it so well. Did the facial paralysis clear up? Do you still have problems with your balance?

Thanks for sharing

Lynn

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

Phil

[Guest guest]

Hi Lynn

I believe the temporalis fascia is a muscle layer of the face a bit below the skin. 'Free graft' just means they take a piece of this and put it somewhere else. They used the same kind of graft to mend a hole in the bottom of my ear which did in fact tear open again. I would have thought that if the graft were to come loose, it would be sooner rather than later.

Stumbling towards the affected ear is exactly what I get - while walking I've noticed that if I veer just a few degrees towards the good side then I do walk in a straight line. It feels strange but it does seem to work! Nausea hasn't really been a problem -I always had good sea legs and maybe, having a background in yoga and karate (both enhance agilty and balance) have made it easier for me to get up and (not quite) running again.

In case you've not yet had enough of balance topics; here's a terrific webpage that tells you more than you could ever possibly want to know about the subject.

http://www.ms-doctors.org/yan8.shtml

Phil

Re: strange ear symptom post c-toma...help!

Phil, at what point did you have your radical mastoidectomy, was it your last surgery? It is discouraging to read about what you've been through. You seem to handle it so well. Did the facial paralysis clear up? Do you still have problems with your balance?

Thanks for sharing

Lynn

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

Phil

[Guest guest]

Hi

Yes, I had a canal wall down radical mastoidectomy. I understand that the semicircular canals sit in bony channels and that utricle and cochlea also sit behind a bony wall (you rarely get this impression when looking at the ear diagrams). All I know is that some of the bone seems to have been crushed into the vestibular area. As they remove that bone (and with a missing eardrum), it effectively exposes the inner ear to the outside world. The doctors say that cold weather affects the movement of liquid in the semicircular canals and compromises the balance. The arrival of warmer weather here does seem to be bearing out this theory - meanwhile the best advice is to keep a hat on.

If it's no more than a nuisance, why is part of the stapes left in situ? I generally assumed that radical mastoidectomy meant no ossicles and no prospect of reconstruction. I've been having the ear cleaning every month - so perhaps c-toma hasn't had much of a chance to get properly started. I hope it all goes better for you in future.

Phil

Re:I love to read your posts> > > Oh Phil, > I enjoy your long answers, you should be a writer, you are afabulous "raconteur". It is amazing how many people suffer from thisand don't know it. As I told you before, I am sure mine has beenthere for some time, however, it did not make me ill. I did haveepisodic dizziness for the last year, only when in a certain position,and it was relieved by a change of position, I can't imagine if Icouldn't make that spinning feeling go away... almost like goingaround a big bend in a roller coaster at high speed... I never relatedthat to the c-toma until just after the surgery... My surgeon isn'tsure if that is what caused that, but I don't have it anymore sincethe surgery. It was quite distinct from any other type of dizziness Iever experience. I get dizzy/lightheaded because of posturalhypotension, and it is nothing like that felt! > I work for a lab, and a co-worker from another location wastelling me about a patient she has who recently had a "tumor" removedfrom her ear. She isn't sure what the diagnosis was, but told me whatthe patient's symptoms were... And it sounds exactly like c-toma...She suffered for 10 years, before they finally took whatever out ofher ear... I am so amazed that this isn't something that is screenedfor in people with repeated ear infections, who also have drainage andvertigo. In this lady's case, she had surgery but suffered facialparalysis. It is slowly coming back but what a set back... and sounecessary!> It is a fluke mine got diagnosed, but luckily it did, causeI might have gone through what you did. My family doctor is verygood, and has never had qualms about referring things to specialists.I really don't expect any further problems... I have had enoughattention to last me a long time... So, like a very co-operativepatient, I will go to my ENT for my periodic cleanings, until that isno longer necessary. > Lynn>

[Guest guest]

Hi Phil, Just wanted to say... I had radical mastoidectomy the first op...wall down. Have since had three ops all to reconstruct and insert prosthesis. As far as I'm aware all bones were destroyed by my C-toma and removed during the first op. When I finally get to talk to the doc or manage to get a copy of my notes I will let you know more. The only reason they said this would be the last attempt was if no hearing was recovered this time it was obviously due to nerve damage and would be irreparable. I am just happy with no sign of C-toma. The tinnitus bugs me a bit...but after 8 years I'm getting used to it. Oh I live in the tropics....warm weather all year...often too warm do you feel that is positive or negative towards C-toma and it's effects? Audrey Re: Re:I love to read your posts Hi Yes, I had a canal wall down radical mastoidectomy. I understand that the semicircular canals sit in bony channels and that utricle and cochlea also sit behind a bony wall (you rarely get this impression when looking at the ear diagrams). All I know is that some of the bone seems to have been crushed into the vestibular area. As they remove that bone (and with a missing eardrum), it effectively exposes the inner ear to the outside world. The doctors say that cold weather affects the movement of liquid in the semicircular canals and compromises the balance. The arrival of warmer weather here does seem to be bearing out this theory - meanwhile the best advice is to keep a hat on. If it's no more than a nuisance, why is part of the stapes left in situ? I generally assumed that radical mastoidectomy meant no ossicles and no prospect of reconstruction. I've been having the ear cleaning every month - so perhaps c-toma hasn't had much of a chance to get properly started. I hope it all goes better for you in future. Phil Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Hi Audrey

Wouldn't have thought that the incidence of c-toma could be influenced by climate. Though cold and damp conditions are probably more likely to facilitate ear infections. So as for the high humidity of tropics..... would you want to go back to the grey, wintry drizzle of Scotland?

Tinnitus used to distract me during my chilhood and teens - before I adjusted to it. With the c-toma and mastoidectomy it became more prominent again, I guess this is to be expected.

Phil

Re: Re:I love to read your posts

Hi Phil,

Just wanted to say... I had radical mastoidectomy the first op...wall down. Have since had three ops all to reconstruct and insert prosthesis. As far as I'm aware all bones were destroyed by my C-toma and removed during the first op. When I finally get to talk to the doc or manage to get a copy of my notes I will let you know more.

The only reason they said this would be the last attempt was if no hearing was recovered this time it was obviously due to nerve damage and would be irreparable.

I am just happy with no sign of C-toma. The tinnitus bugs me a bit...but after 8 years I'm getting used to it. Oh I live in the tropics....warm weather all year...often too warm do you feel that is positive or negative towards C-toma and it's effects?

Audrey

[Guest guest]

Hi Lynn

Belatedly to answer your question - once upon a time I was a psychiatric social worker, then I became a bit too deaf to continue and now now do graphic design using computers.

Phil

Re: strange ear symptom post c-toma...help!

Phil, at what point did you have your radical mastoidectomy, was it your last surgery? It is discouraging to read about what you've been through. You seem to handle it so well. Did the facial paralysis clear up? Do you still have problems with your balance?

Thanks for sharing

Lynn

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

Phil

[Guest guest]

Hi Phil, Well if you'd asked me 4 weeks ago I would have left the tropics in a second...sometimes the heat is exhausting. Returning to Scotland is my dream...maybe next year....just one more snowball fight!! I don't care about the weather!! The tropical weather is often blamed for causing ear infections... my son always does better down south in the cooler climate but maybe that is to do with less swimming also. Interesting to read your occupations...no wonder you write so well!! I seem to remember reading that you or someone else ...would not be given reconstructive surgery or prosthesis because of wall down surgery prior? My point was I had that the first op and they have now tried 3 times. Maybe It WAS useless in the start. Anyway at least now I know they tried! Aud p.s. do you still practice Yoga? I find it good for my mental health but my arthritis is making it too difficult at present. Re: Re:I love to read your posts Hi Phil, Just wanted to say... I had radical mastoidectomy the first op...wall down. Have since had three ops all to reconstruct and insert prosthesis. As far as I'm aware all bones were destroyed by my C-toma and removed during the first op. When I finally get to talk to the doc or manage to get a copy of my notes I will let you know more. The only reason they said this would be the last attempt was if no hearing was recovered this time it was obviously due to nerve damage and would be irreparable. I am just happy with no sign of C-toma. The tinnitus bugs me a bit...but after 8 years I'm getting used to it. Oh I live in the tropics....warm weather all year...often too warm do you feel that is positive or negative towards C-toma and it's effects? Audrey