Not Diagnosed yet but searching for answers...

[michelle]

Thanks again everyone. That description of Hydrops does sound a lot like what I've been dealing with. Maybe (hopefully) that's all it is?

Part of me wants to just say, "Okay, that's what I have" and take the steroids and hope it all goes away.

Another part of me thinks that weight gain and mood swings from three weeks of steroids doesn't sound like much fun IF it's not the hydrops thing. I kind of want to call the Dr and leave a message requesting a referral for an MRI before taking the prednisone. I'm not sure.

[leapyrtwins]

You're only slated to be on the steroids for a short period of time, so I'd try them and see if they work.  Just my opiinion here.

Hopefully they'll solve the problem.  If not, I'd insist on an MRI since that's the only definitive way to rule out (or diagnose) an acoustic neuroma.

Good luck,

Jan

[Jim Scott]

Michelle ~

Although your doctor is making a clinical observation (an educated guess) about your symptoms being caused by edema, the steroids are, as Jan suggested, worth trying. He probably won't order an MRI unless he sees that his initial diagnoses is incorrect. Insurance companies don't like paying the high cost of an MRI if there are other possibilities that might determine the cause of your symptoms.  If the steroids actually help, you'll have your answer.

Jim

[michelle]

You're both right. Thank you.

[mk]

Hmmm, based on my experience, even if you have an AN, steroids can help with tumor related edema, therefore help the symptoms to subside. So IMHO, even if the steroids help (which they most probably will), this doesn't rule out an AN. Also a tip for steroids: take them in the morning. That way you get to burn all the energy that comes with the steroids during the day, and might still get some decent sleep at night.

Marianna

[4cm in Pacific Northwest]

Hmmm, based on my experience, even if you have an AN, steroids can help with tumor related edema, therefore help the symptoms to subside. So IMHO, even if the steroids help (which they most probably will), this doesn't rule out an AN. Also a tip for steroids: take them in the morning. That way you get to burn all the energy that comes with the steroids during the day, and might still get some decent sleep at night.

Marianna

Marianna is SOOOH right here. I did the steroid thing and the symptoms did subside... then almost a decade later we DID find a whopper tumor at 4cm. (way too late to treat with radiation) Looks like my DR was very wrong and should have done a MRI from the start. You can repeat my mistakes ... or learn from them.

DHM

[Lizard]

Michelle,
You have to ask for the MRI.  An idea is to call the ENT and ask to be sent for an MRI.  Hopefully the Dr will call you back to discuss, I find its easier to be honest and speak my mind to the Dr over the phone...they can be intimidating in person...just my 2 cents!
Hang in there,
Liz

PS hope your little one is feeling better!

[anissa]

Hi! Also a mom of four here!  Mine are 6, 6, 4, and 2. I agree with pp's in try the steroids but def call the dr andask for the MRI. After 3 appts I told my dr I thought I had a brain tumor and he was speechless that I would make that assumption.  I feltlike a total hypochondriac but it unfortunately turned out I was right.  Best wishes and I'm sending you strength!

[michelle]

Thanks everyone! Hi fellow moms-of-4s! :-) It's true, there's not many of us. I find especially not here in LA!

Well, I've been on the 60 mg. of prednisone now for 1 week. Would I be noticing any difference yet? I still feel about the same. My ear is still 100% full, un "pop-able", and muffled. The "thud, thud, thud" when I walk, jump, anything, is still completely there. The only thing I've actually noticed is less of the pulsating tinnitus when I'm just sitting or laying down. Really, the most annoying thing right now is that grinding/squishing sensation in the back/side of my head up through my right ear when I turn my head, look down, or even roll my eyes. I'm also having painful headaches centered on my right, lower side. No fun.

The good news is that I'm not as scared or focused on all of this. Yes, it's on the back of my mind most of the time simply because the physical symptoms are constantly annoying me, but I feel more comfortable with waiting it out to find out.

I am planning on calling my Dr. and asking him to schedule me for an MRI with contrast before my next appt. (July 12th.) I want it done either way, to rule out the possibilities.

Thanks for all the advice!

-Michelle

[moe]

Michelle,
Glad to see a positive, and relaxed attitude. There really is nothing that can be done until the MRI shows what is going on, so just continue plugging along like you are doing, with your busy life, and it'll all come around.
You'll see.
Did the doc ever tell you to take antihistamine/decongestant type medicine? I would imagine that would be a no brainer..
Maureen

[michelle]

Actually, I was taking sudafed daily in an effort to help the clogged/pressure feeling. The ENT told me to STOP. He said, "You don't have allergies, you don't have sinus problems, taking a decongestant will do nothing." So, I guess that's that.

[anissa]

My brother had similar symptoms and the Dr. prescribed Lipoflavanoid which is supposed to increase blood flow to the ear.  It helps him with fullness and tinnitus, they think he has Mineare's Disease. 

[moe]

Actually, I was taking sudafed daily in an effort to help the clogged/pressure feeling. The ENT told me to STOP. He said, "You don't have allergies, you don't have sinus problems, taking a decongestant will do nothing." So, I guess that's that.

Doctors think they know everything, don't they.... he could have easily said you can take them if you want but they may not help.....Just my 2 cents worth
Maureen

[michelle]

Went to my follow-up today. The steroids have not helped. The ENT prescribed a diuretic and ordered an MRI with contrast to rule out an Acoustic Neuroma. I should be getting a call tomorrow or the next day for my appt. time. I will let you all know how it turns out. I'm praying, crossing fingers, and whatever else I possibly can that I DO NOT have an AN, and that the diuretic plus steroids helps whatever is causing this. It will be nice to finally know one way or the other.

Thanks again for all the help and support.

[Jim Scott]

Michelle ~

Our thoughts and prayers will be with you as you approach your MRI date.  We share your hope that you don't have an acoustic neuroma. 

Jim