Going for MRI tomorrow

[thornapple]

I went to Michigan Ear.

They think my last two MRIs were crap. So they are ordering a new one.

They actually said the doc who did the last one had no medical basis for diagnosing me with an intracochlear AN using the "lousiest MRI for diagnosing ear disorders I have ever seen." He also said it was good for diagnosing that I have a brain, but not much else. I LIKE this doc. HAHAHAHAHAHAHAHA

Well...that was kind of what I thought of the last two MRIs. I couldn't see anything, and it was all fuzzy. And the only second opinion my HMO would let me get couldn't see anything, either. The HMO wouldn't let me see anyone else because the diagnosing doc said it wasn't treatable. Michigan Ear says we don't know if it isn't treatable because WE DON'T YET KNOW WHAT IT IS. Take that, you bleeping HMO.

How did this happen? I finally had a revelation, and I changed primary to my husband's insurance. They will let me see ANYONE. Thus I am now a patient at Michigan Ear.

So in two weeks, we may all actually know something after two years of being blown off. Is it the smallest AN in the world, or is it.......nobody knows!

Look for the next installment in about two-three weeks.

[Kaybo]

Thornapple~
I'm so glad you are finally on the road to getting some answers!!

K

  PS - Word to the wise: DON'T wear your belt w/ a metal buckle in the machine, even if they tell you it is OK since it is just of your HEAD!!!!!!!   

[thornapple]

    Ok, I won't! I will wash off all the sparkle eyeshadow tonight, too.

Hmmm......a skirt with elastic waist and a long sleeved t shirt. Oh yeah, EAR PLUGS!!! I like mine. And where the heck is my eye mask? Hey, I'm ready!

BRING IT ON!!!

[Rivergirl]

We have to be are own advocates because no one else wiill do it......bravo!

[leapyrtwins]

Thornapple -

Michigan Ear has a very good reputation; you're definitely in good hands with these docs.

Good luck with the MRI and don't forget to update us when you get the results.

I'm anxious to hear what's inside your head - besides a brain, that is 

Jan

[Sheryl]

Thornapple - best wishes to you and kudos for being proactive!!

If possible (financially) stick with PPO's or old fashioned indemnity plans (if there are any left).  After dealing with HMO's through my job years ago, I finally threw in the towel - was able to help many patients through their tangled webs but too much stress on me.  Now I am very happy sitting with headphones on and doing transcription.

Keep us updated,
Sheryl

[thornapple]

I am back and my MRI cd is out in the car...of course it has no report because it hasn't been read yet. That takes two weeks...but I can look.

Everyone was great. They even put in an iv port so they wouldn't have to stick me twice, which I thought was very considerate. I had to have a kidney function lab test before the MRI, which was a very good idea. If I had thought of it I could have had that done at home last week, but duh. My thinker is very tired.

As my ear gets worse and worse, every time I go through something with a lot of sound or ear irritation, the ear gets what I call "angry".  The noise and vibration of the MRI really irritated it, and the 6 hour round trip drive didn't' do much for me either. I am exhausted and ready to sleep a very long night..I'll look at the CD tomorrow. My ear is going nuts. It sounds like niagra falls in there. I took advil and diazepam, the two things that seem to help, and am going to get under the covers with my 18 year old cat and sleep. Glad I did this on a Friday or I would miss another day of work. I won't be good for much tomorrow.

I did manage to stop by my mother in law's house and make her a pot of chicken soup right after the MRI, and stock up her refrigerator. She is having trouble doing things like cooking because of neuropathy in her hands and back, hip and ankle trouble, and just eats junk like warmed up pizza for three days.  I packed up some home-cooked meals she can defrost in the microwave and cut up a whole cantaloup for her. Then the drive home with my screaming ear and my eyes jumping around. I just got behind a truck going 60 and stuck with it.

There's the kitty....off to sleep.

[thornapple]

My ear is hurting...so is my neck. Kitty and I are still sleeping.

Looked at my CD>>>pretty fancy head guts. Burned a copy to my desktop so I'll never lose one of those things again.

[thornapple]

Just got back from Michigan Ear.

Well, the verdict is in, and I am one of the lucky people who was diagnosed by incompetents and there is NO SIGN OF A TUMOR ANYWHERE on the new MRI.

My final diagnosis is really weird atypical migaine, and I am being treated for migraine. So I have migraine associated vertigo, and no tumor.

It took over nine years to get this figured out.....

I am going to bed. Tomorrow is a new day.

[Jim Scott]

Thornapple:

I read your saga with interest and was very pleased with the last chapter.  Mainly the part that said your MRI showed no signs of a tumor, anywhere. 

That, due to inane insurance rules, it took almost a decade to determine this is definitely frustrating but you can take some comfort in the fact that, at last, you know you're tumor-free.

The migraine/vertigo diagnosis is not exactly a cause for celebration, but still, it beats an acoustic neuroma and, one hopes, it can be controlled with medications.

I wish you success in your migraine treatments and I'm sure many folks here appreciate your posting the MRI results.  We all hope you have better days ahead. 

Jim

[Nancy Drew]

Hi Thornapple,

Just thought I'd pop in here to ask a question about the migraine diagnosis.  My AN was found by accident.  Was having really bad vertigo, and the ENT couldn't figure out what the problem was so he sent me for a MRI.  That is when they found the AN, and I was referred to an AN doc.  My hearing was good, no balance problems....just vertigo.  The AN told me vertigo is usually not a presenting problem with ANs.  He thought the vertigo was a migraine without the headache.  I have a history of migraines so I wasn't so sure he was giving me the correct diagnosis.  I researched, and it said you can have vertigo, vision problems and stomach aches without the headache part of a migraine.  I still wasn't convinced.  Then one of my other doctors had an idea.  I take an anticonvulsant, and the dose had been increased before the vertigo started.  He sent me for a medication level, and the level was too high.  Vertigo is a side effect when the level is too high.  As soon as I reduced the dose, the vertigo went away.

Just wondering if you take any meds that might need a second look at or did the MRI confirm that you are having migraines?  Best wishes with the migraines.  I had one last night, and they are horrible.  I have tried all of the migraine meds with no results so now I take Vicodin.  Luckily I don't have migraines very often.

Nancy

P.S.  So happy to hear that you don't have an AN.

[thornapple]

I thought my migraines were under control because I rarely have a headache. As it turns out, I was wrong.

Migraine is NOT a headache. Migraine is a neurological disease, and headaches are only ONE of the many symptoms.

Other symptoms can be:

disequilibrium (translate: feeling like you are walking on a boat on the high seas)
diminished hearing
visual disturbances
sensitivity to noise and/or light
nausea
motion sickness
sensitivity to movement
nerve damage
vertigo

Some doctors feel migraine plays a large role in sudden hearing loss.

I have learned that migraine "migrates"; that is, it constantly changes over the years. Symptoms change, triggers change.

I was on topamax a year ago for the migraine. It worked really well for the migraine. It also made me talk like a robot, forget everything, including what I was talking about in the middle of a sentence. And it made my hair thin in the front, which has never come back. So if you want bald spots, "dopamax" is definitely for you.

[Nancy Drew]

Hi thornapple,

Migraines are just plain weird in my opinion.  I have had a lot of the symptoms you described.  I had 4-5 migraines a week for over five years before finally getting some relief.  Went through all of the migraine meds (topamax included) until I finally found Midrin.  Unfortunately they quit making Midrin (brand name), and the generic didn't work for me.  So, that is why I had to switch to Vicodin.  After I had a complete hysterectomy in 2003 and went on hormone treatment, 80% of my migraines went away.  Now I only get them when I am stressed, weather related or allergies.

I hope things get better for you with the migraines.  If you have had the ones with the headache, I can definitely feel your pain.  I don't think people can really understand a migraine headache unless they have had one. 

Nancy

[sgerrard]

I get the visual disturbance, sometimes called a visual migraine, or better, a scintillating scotoma. Mine looks like a boomerang covered in glitter - a visual distortion that starts right in the focal area, so you can't focus on anything for 5 or 10 minutes, then drifts off to one side over the next 20 minutes. Some people who get them get a headache afterwards; fortunately, I don't. It is a very strange and disconcerting experience when it happens, though.

Steve