Not Diagnosed yet but searching for answers...

[nanramone]

I'm glad you're feeling better now, and hope your problems are related to something more easy to deal with...

[michelle]

My ENT appointment is scheduled for 8am, Monday the 21st. I hope all of these symptoms are caused by something easier to treat, too.

[Lizard]

Us too, make sure you let us know either way OK, we're pulling for you   
Liz

[michelle]

My ENT appointment is monday morning. What should I say? What questions do I ask? I feel like I'll come across as a total psycho-hypochondriac if I ask him to check for an acoustic neuroma, because I researched online and that's where my symptoms led me. I also don't want to be brushed off and not find out what's going on. Help?

[4cm in Pacific Northwest]

My ENT appointment is Monday morning. What should I say? What questions do I ask? I feel like I'll come across as a total psycho-hypochondriac if I ask him to check for an acoustic neuroma, because I researched online and that's where my symptoms led me. I also don't want to be brushed off and not find out what's going on. Help?

Michelle,

BIG HUG!

Between 1998- 2002 I kept going to a doctor with symptoms. My research had led me to a “possible” tumor also. I asked for an MRI and my PCP flatly refused… and treated me as a hypochondriac and he even had the audacity to suggest I see a “stress therapist”. His ego was apparently insulted by me (a lay person of all things!) walking in the door with printed Internet research material. (His problem! His arrogance! His male ego... Not mine)

In 2007  (age 44) I finally switched doctors. I asked for an MRI and got it. There was a whopper XXL 4cm tumor … and it was too-late-in-the game to qualify for radiation- at that size. Early diagnoses may have saved both my hearing and my face (I have some paralysis and synkenisis as a result of the surgery- being it was such a long and complicated surgery with such a XXL tumor… and other issues that may have been avoided.)

Who cares if the doctor thinks you are a hypochondriac?!?

Ask for a MRI to be done both with and without contrast die. The MRI is a small painless process that will give you piece of mind. You do not want to do as I did …and go almost a decade with symptoms going by- without accurate diagnoses… as the tumor grows to a life threatening level. Please learn from my mistakes and lack of assertion in my age 30's.

 â€œIF” there is a tumor it could be too late to treat without complications if you do not get one done NOW. If I had been accurately diagnosed back in 1998, when I first had symptoms and I actually went to see my doctor -we COULD have treated it when it was smaller. (In those days CIGNA required a PCP referral 1st- now they do not.)

Hold your ground and get the MRI done. Absolutely INSIST on an MRI!!!!!


Feel free to print this up and take to the doctor’s office. The doctor does not want to be negligent -as my first one was.

I hope you will report back after the MRI- and you are clear of a tumor. However know that “if” there is something on the scan… the resources and treatments now are so much better than they were … even 3 years ago.

There have been many success stories of treated people who are now back at cycling, sail boarding, surf boarding, snow boarding… and some even back sitting on executive boards listening to others… with hearing aids and high tech implants.

I see you live in LA. HOUSE Ear Institute is world renown and basically in your own backyard. (Many people on this forum are from all-over-the-world and flew to LA to go there- specifically.) IF you do not need a PCP or ENT referral than simply make an appointment and go there for a hearing test …and talk to a doctor about you symptoms. HEI can do an MRI right there at St. Vincent’s hospital.

Here is their information.

House Ear Clinic
http://www.houseearclinic.com/

About House
http://www.houseearclinic.com/about.htm

LA office contacts
http://www.houseearclinic.com/losangeles.htm

2100 West 3rd Street
Los Angeles, CA 90057
(213) 483-9930
TDD (213) 484-2642

Office Hours:
Monday thru Friday
8 am - 5 pm

If you do not need a PCP ENT referral -just call them directly. If you do then, again print this up, and take it to your doctor and ask for a referral. (Actually replace “ask” with “insist” in my last sentence.)

Be assertive and go for an appointment and a MRI.

I no longer have patience for male doctors who make women feel like they are neurotic hypochondriacs. I am sorry- but I have had to deal with one too many incompetent male chauvinist doctors… and I have little tolerance for those who will not treat me or send me for diagnoses referrals- when I need it done. (I have less patience for nurses, male or female, which cannot keep my children’s medical file …or mine …neatly organized and accurate.)

I am a Canadian residing in the USA who was not used to simply walking out of a doctors office when not satisfied …to go find another. In Canada you have NO choice.   I stayed way to long with my 1st incompetent, here in USA doctor with that mind-set, and should have walked out of his office ages ago.  Recently I had a doctor’s office totally mess up on my child’s immunization and her record chart. I set an example for my daughter and said, “This is unacceptable- we are leaving.”  I took her by the hand and we walked out… never to go back.   You live in the USA and have freedom…   freedom to find a doctor who will listen to you, treat you with dignity (not as a hypochondriac) and get you an accurate diagnose. It is your right here- in the USA.

Stand strong and directly ask for a MRI to be done – both with and without contrast die.

I pray (one of the 4 freedoms I so respect here the USA) that there is no brain booger and that if it is an ear issue -it may simply be treatable with a pharmaceutical prescription.

Your freedoms here in the USA are:
1)   Freedom of speech and expression
2)   Freedom of religion
3)   Freedom from want
4)   Freedom from fear

You need to have freedom from fear of the unknown here.

Speak you mind to your doctor …and get an accurate diagnosis.

You need piece of mind. See a specialist! You live in the country that has freedom. Be thankful for this… and exercise your rights.

Please DO let us know the results. I hope you are not diagnosed, as one of us. However if you are you will find open arms and lots of support here. In the meantime get results…

… and know we are here for you.

HUGS

DHM

[4cm in Pacific Northwest]

Audiologist appt. was pretty quick and uneventful. She told me moderate hearing loss in my right ear with no evidence of middle ear fluid. Referral to ENT. Now the waiting for approval for the referral and then an appt. Should be in the next few weeks. Thanks again for all the help.

-Michelle

Michelle,

I had not moderate but "Mild" hearing loss in the left ear. I had 100% word recognition in both ears. If I did not have an MRI no one would have believed I had a tumor as big as 4cm. The hearing test is just NOT enough.

Remember insist on this one thing at the ENT appointment- a MRI. It must first be done without contrast dye... then with IV the dye must be inserted so they have an accurate comparison- in the scans.

If I had had radiation in my 30's I may still have hearing and full facial function today. However because surgery was my only option, a decade of growth later in my mid 40's once it was finally diagnosed, the hearing was lost and the face damaged in the surgery process due to cranial nerve damage.

MRI .... MRI... MRI... get it done!!!!
Praying your MRI report says "NO brain booger"

Another HUG...

DHM

[CHD63]

Michelle .....

I wish you well on your visit to the ENT on Monday.  Unfortunately you may not have any more answers until you have an MRI with contrast ..... as DHM said INSIST on it if the ENT does not automatically send you for one ..... you have the right, given your symptoms.  My ENT sent me immediately for an MRI.  (Most docs do not want to be sued for a missed diagnosis.)

It is always possible that your ENT will uncover a reason for your symptoms that are not related to an AN, but the AN should be ruled out anyway with an MRI with contrast.

Regarding questions for the doctor:  basically express your concerns regarding the type of symptoms you are having and what he thinks could be causing them.  If he/she brushes you off, at that point insist upon an MRI with contrast.  If an AN is found on the MRI, there is an excellent list of questions to ask the doctors.  Just go to the ANAUSA web site home page, Overview, Questions for Treating Physicians.

Best wishes and many prayers for a quick diagnosis.

Clarice

[michelle]

DHM,

First of all, thanks for sharking your story. I'm sorry that you had to go through such a run around to finally get diagnosed! Also, thanks SO much for all of the advice and support! I feel much more confident to go in there and be assertive regarding my health care. I'm such a wimp when it comes to stuff like this!

Thanks, also, for all of the useful info! I have an HMO and am required to have referrals and authorizations and whatever else for EVERYTHING, and unfortunately do not have the budget to do anything out of pocket, so I'm forced to stick to my HMOs guidelines and boundaries. It is very useful though to know about the HEI.

I am also praying for no brain booger. My biggest fear though, is that it's something "worse" than an AN. It's so scary to have four little kids and thing something debilitating could actually be wrong with me. Hopefully it's nothing!!! The first time I finally sucked it up and went into urgent care for all of this, I was so afraid they were going to tell me something had crawled in my ear and died (irrational, since the symptoms had been consistent for 6 months by then, but still.) Now though, I WISH that it would just be something that simple and they could take whatever it was out and I would be back to normal!

Clarice, thanks again for more support. I will come back and let everyone know how it all goes when/if I find something out.

-Michelle

[michelle d.]

Hi Michelle   Haven't responded but have been reading your entries and wondering how things have progressed?? Have you had an ENT look into your problems yet? Please keep us updated....I remember how terrible the waiting was...i was just telling my husband tonight that about a year ago this time, I was starting to get scared of the symptoms I was experiencing but didn't seem to get any help from doctors and I was starting to doubt myself! Fortunately, i went for a 3rd opinion in late summer last year,  to the right ENT and he suspected right away, in 5 minutes, what it was and ordered an MRI which confirmed an AN. Even if yours is a different problem, you need to be vigilant about getting a different opinion if the doctor isn't listening to you....YOU know your own body better than anyone else, so keep trying. And please let us know how you're doing, ok?  Take care....~michelle d.~

[michelle]

Thanks Michelle!

I saw in another post that you're from Rochester, New York. That's where my mother-in-law was born and raised. :-)

Thanks for the advice and support. My ENT appt. is scheduled for Monday morning. I will post about how it goes.

-Michelle

[michelle]

Saw ENT today. He prescribed 3 weeks of prednisone for something called "Hydrops." I have no idea what that is and do not have time to research right now, as my little one is ill.

I go back on July 12th, and if the steroids have not helped, we "go from there." I was a wuss and didn't have the guts to come right out and ask for the MRI. :-(

[moe]

Hi Michelle,
I  can't imagine having 4 little ones and all this stuff going on.
Wikipedia says this:

In general, hydrops (pronounced /ˈhaɪdrɒps/ "HI-drops") is another name for edema.

    * Endolymphatic hydrops - a pathological feature present in Ménière's disease.
and another google site from E Med;

Background

Endolymphatic hydrops by definition refers to increased hydraulic pressure within the inner ear's endolymphatic system. This pressure accumulation causes the following tetrad of symptoms: (1) fluctuating hearing loss (sometimes good or bad); (2) episodic vertigo (can be violent); (3) tinnitus or ringing in the ears (usually low-tone roaring); and (4) aural fullness (pressure, discomfort, fullness sensation in the ears).

So see how those steroids work,but still insist on the MRI with contrast! We are your subconscious! You're not a wuss, you have your hands full, but we are all of the same consensus that it must be done. Better to know now IF it is something.

Hang in there,
Maureen

[Keeping Up]

Hey Michelle, mom of four

I like finding moms of four ... we aren't that common.  I too understand how your own health priorities take the back seat when a little one is ill.  (My just three year old is now the proud owner of a WATERPROOF fibreglass cast for his more than likely broken foot ... no sign of break on the xray but a very bruised/sore foot.)  Your world stops for them.

Ask for the MRI.  You are not a wuss.

Deal with the next step after that --> for someone with a very small, asymptomatic tumor (except for hearing loss and that gosh darn ringing!), it is very easy to say.

Welcome, but hope you don't have to stay!

Ann

[opp2]

I know how hard it can be to ask for the MRI but I can tell you if I hadn't asked for one who knows when we would have found the tumour. Sometimes writing it down on a piece of paper and taking it with you can help. Then if you can't actually say the words just hand the Doc the paper. Whatever it takes Kid. Hang in there.

Nikki

[kenneth_k]

Hi Michelle (and Nikki).

It is actually a very good idea to write it down and bringt it with you next time you see your doctor.
I strongly encourage you not to give up and keep on going.
Get the MRI and get it out of your system. It is a lot better to get a false positive result than speculating about disease for a lengthy period of time.

Kenneth