How helpful are doctor's offices with acute symptoms?

[thornapple]

I am curious about how responsive other people's doctors have been pretreatment with helping one deal with acute and disabling symptoms, such as nausea, inner ear inflammation, etc. Do they jump right on it and help you deal with quailty of life issues, or do they not?

I am on watch and wait with this one now, and getting consultations. The doctor who diagnosed me feels there are other things going on in both my ears as well, such as complications of migraine. He wants me to go away and come back in 6 months, and I had to return to my general practitioner to get prednisone to deal with the inflammation in the affected ear. If I had not done that I feel all the hearing left in that ear would now be gone, and it's pretty useful hearing. The specialist seems to think that since in his opinion I am going to go deaf in that ear anyway, sooner is just as good as later. With "help" like that I tend to just go away permanently and am seeking a new specialist. I need actual active help, not a semi-annual spot check.

[Windsong]

Hi Thornapple,

Last year prior to fsr for my An, I had infllammation in my An ear plus some leaking of a clear liquid. My neurotologist put me on 7 days of ciprodex drops. (ciprofloxacin + dexamethasone) I needed it again this fall. Now I am using it once a week as sort of maintenance. It helps.

I browsed the net one day and discovered that there is a study of some kind being done in Toronto along with another country with dexamethasone and ears etc. If i find it again I will post it.

Hope your search for a doctor regarding your An comes up a winner. It makes a huge difference to have doctors who are experienced and with whom you are comfortable.

All the best,
Windsong

[thornapple]

Well, thanks...that's good to know. Are the drops put "in" the ear? By yourself?

Oral prednisone is an amazing drug that has saved me many a time, but it sure has gnarly side effects. I can't tolerate oral dexamethasone at all.

I am about at my wit's end here. The symptoms of my ear and the steroids are taking me down.

[Windsong]

Hi,

I can well imagine about the gnarly side effects of oral dexa from what i've read here. Yes, they are drops put into the ear. 3 drops each. I do it myself. Stand in front of a mirror, tilt my head down to my shoulder, reach over my head with one hand to pull up the ear lobe, watch 3 drops go in, wander around for a min with my head tilted then straighten up.

I can understand your frustration about the ears as i have had problems for years and this last round is making me really frustrated. Most people have had maybe one earache in their life so I would guess they'd understand how crappy ear probs can be......

Ill go look for that site now.....

http://clinicaltrials.gov/show/NCT00271791

I took a quick read now and see that actually they are not yet recruiting in Toronto for this study but they are elsewhere. I noticed this site and a few others largely because of the studies on use of steroids now. I can't find another site at the moment that dealt with ciprodex specifically but it was in connection with ears  and i think inflammation.

Windsong

[thornapple]

Yup. Nothing quite like a 6 year, misdiagnosed, "imaginary" earache that turns out to be a schwannoma. If this stuff could figure out how to make it's way through my eardrum and into my cochlea and labyrinth where all the action is, it might be an alternative to staying on prednisone for months, which would make me drive away all my friends and grow as big as a small country. Then again, I actually have to find myself a medical professional willing to go along with me. Where the heck do they keep the good ones? Inquiring minds want to know.

[Kathleen_Mc]

Thornapple: It has been my experience that surgeons do not have any bedside manner (at least 95% don't) and when it comes to dancing inside my brain that's ok with me....are you followed only by a surgeon or and ENT as well.....that or a family doctor might be better equiped to deal with ear problem etc to do with the AN until treatment is needed or/and MRI's reviewed to determine growth etc.
Kathleen

[thornapple]

I have noticed that! I had come to the same conclusion. Surgeons not only don't have bedside manner, they don't have manners at all. All but one of the ones I worked with were the rudest and most arrogant of dudes. They are very good at surgery, and sometimes other things, but not people skills.

I worked with/for doctors for years and the surgeons were always cold fish. I actually remember a discussion in a hospital elevator where a surgeon said, "well they knew he was going to die from this eventually, so I don't understand why they were so upset. They were all crying. It's very strange." Um. He was genuinely puzzled by grief.

I am still not sure what the outcome will be for my teeny little tumor. It isn't threatening anything but my hearing, and balance, and quality of life. It's very small. Nobody recommends cutting it out. But the acute symptoms are life changing. Chronic ones I can adjust to, but what is going on now is making it very hard to work, live, pay bills, exist, function, talk, sleep......I need help. I need help badly. It's like having a demon in there eating my ear, and it's getting meaner and meaner by the month.

[Battyp]

My ENT did pull the come back in 6 mos and I lost my hearing.  I had know idea I could have had a tumor causing the problem had I of known I'd have been more proactive!  I say give them hell and keep looking for a doctor that you're comfortable with and listens!  I know in this area not many of them have seen an's so they ignored the symptoms and tests until the damage was done