Please help.

[5frys]

We have come to the conclusion that my husband has an Acoustic Neuroma.  Last year at this time he was running 6 miles a day, 5 days a week and now he can hardly get off the couch. It has devistated our family.  He is only 34 years old and recently returned from Iraq, so the military did many blood tests to see if it was related to something he caught over there.  After 7 rounds of antibiotics and getting the run around, I hit the internet.  It is one thing if you have one or 2 symptoms of something, but he has EVERY symptom of Acoustic Neuroma.
I am very worried about him. Now we are on a remote assignment and getting him help has been very hard.  He had a CT scan with the dye.......2 weeks ago, but they say it will be another 2 weeks before we get the results back.
He has great hearing loss and has had tinnitus for almost 8 months. Then he started falling over with the dizziness. This is a man who builds houses and who could once balance on beams! Then he felt immense pressure in the back of his head at the base of his skull, has trouble swallowing, headaches, fatigue, nausea, and now the whole right side of his face is numb and his vision will go black. He has also lost almost 20 lb. he didn't need to loose.
I am afraid if this is what he has that it is pretty far advanced. We are in the middle of the Atlantic Ocean and they would have to send us to Landstuhl Army Med. center in Germany or to the States.
Any words of wisdom for this worried wife?? No one seems to be taking him seriously.........but me, the one who knows him best.
He is a great husband and father to 3 who has really gone down hill.  I can't stand to see him go through this anymore.
To those of you who have had an Acoustic Neuroma, do you believe this is what he has?
KF

[nancyann]

To KF:  I'm so sorry to hear of your troubles - I'll tell ya, I had a CT Scan with contrast 1 year before diagnosed with AN - the CT Scan did NOT pick up the AN - the MD told me it can pick up maybe 88%, whereas an MRI with contrast picks up 99%(?).   I had a 2CM AN.  Your husband needs to have an MRI - that's the first thing.  Again, I'm so sorry this is happening to your family.  Best wishes.  Keep us posted.   Nancy

[Dealy]

Ron here-I agree with Nancyann. Please get yuour husband to have an MRI Now. I know the military can be pretty dumb sometimes when it comes to taking  care of our troops. I was in the United States Navy during the Vietnam War. This is an issue where an MRI can give you a definite answer within at least 3 days. Sounds like an AN but could be other issue also. I hope you have success .Please keep us informed on this group-all is not lost until you have an answer. I went numb on the right side of my face at work almost 2 years ago-and even then I was mis-diagnosed with a Sinus Infection by a local Doctor. The MRI confimed an AN. Keep yoy in my Prayers. Ron

[5frys]

Katie here again............Thanks for your advice about the MRI over the CT scan.  The thing is, it took us over a month to even get the Dr to get him to give my husband that!  He got the CT scan 2 weeks ago and they said it would take 4 weeks to get results back.  We are on a small remote island in the atlantic Island where things don't seem to get done quickly.  The people don't do things speedy and they don't have the man power here.  The CT scan he got was off base and they have to "translate" the results. It is frustrating, but we are trying to get the MRI now, even if we have to pay for it.
Thanks.

[Joef]

Yep .. and MRI w/ contrast  .. I would even consider going down to ER now! and waiting to get one...

and dont let them wait for 2 weeks .. you should see on the MRI as soon as it is done if something is wrong .. the tech will see it .. Mine looked like a tennis ball is in my head .. I did not need to be a doctor to see it did not belong there!

[Gennysmom]

Jumping in to support my fellow AN'ers....agreed, MRI with contrast ASAP because of so many symptoms.  Good luck and prayers sent in your direction Katie!  Please keep us updated!!!!! 

[Crazycat]

You say he had a CAT scan and you're going to have to wait 4 weeks for the results? That's as ridiculous as it is negligent. When I had my MRI, they were calling me the next day with the results.
   I was a runner before my AN took me out. I'm running again. Your husband needs proper treatment, right now. Judging by his symptoms, there's no time to lose. I know what he's going through because I went through it myself.

   You may want to apprise those bungling idiot bureaucrats that call themselves doctors of this forum so that that they may learn something from it.
That really enrages me. Having been through the mill I know what it's like to have waited far too long for treatment. Thankfully, when I did finally receive treatment, it was from some of the most competant surgeons on the planet.

   Please keep us apprised,   Paul

[5frys]

Our remote military assignment is on Terceira Island, Azores, Portugal and the problem is they don't have MRI on the Island, so now we need to try to get the military to fly us out to get one. AND convince them that he truly needs it. I am trying to stay positive and all your comments have been very encouraging to me.  It has been pretty lonely for us. Yes, he has also been misdiagnosed many times with sinus infections also.
I'm not entirely knocking the military.  They have given us 16 good years.........and vice versa.
Katie sends again and I will keep you posted

[Derek]

Hi Katie...

So glad you found this great website where you are obtaining the best possible advice from very knowledgable folk as to  what is required re MRI with contrast as being the only definitive method of verifying whether or not your husband has an acoustic neuroma. Hope you are able to convince the medics and that everything works out ok.

Best Regards

Derek

[tony]

I saw your notes - these are worrying times for sure
a couple of thoughts for you
AN`s are probably the most mis-diagnosed condition there is
- usually a sinus infection is assumed to be the cause (but its not)
and yes only an MRI will say for sure one way or another
(Its actually quite hard to diagnose anything from the internet).
So, a couple of tests for the base medics to try
Test one : Ask your husband to attempt to walk (in front of the Doc)
one toe directly in front the other - like a slow type-rope walk
Just like the traffic cops would ask you to
- if they thought you were drink- driving
(I know your husband is NOT drunk)
an AN patient will appear to walk like a drunk
- and may even fall - so soft carpet, no glass or hard landings.
Test two : while still and standing upright - try closing both eyes
an AN patient may just fall or wobble - so soft landings again.
If either or both is positive then it suggests there
is some kind of interference with the balance nerve
- Sinus alone wont do this.
At this point you should have enough for an MRI scan to check
Show this note to the Doc if required
Let us know how you get on
Good Luck
and Best regards
Tony
UK

[Crazycat]

If there is a way for the military to send you state-side for this then you should make it happen ASAP! I would not entrust myself or anyone close to me for the care your husband is in need of in that place. This is your husband's life we're talking about. You need to make a move soon.

 Ã‚              Paul

[Sue]

Hello -

I concur with my fellow ANer's.  I can't believe your husband can be this sick with so many symptoms and they are putting him off like this. It took a year before I was properly diagnosed. I did NOT have the balance issues like so many do, which is one reason why it took that long to get an MRI, AFTER I started experiencing facial numbness.  If I had presented my ENT with balance issues first, I think I would have been given the MRI. The CT scan didn't show up anything, but he wasn't looking for an Acoustic Neuroma. You can even print out these messages and show them to whoever is in charge of the base. I would say to the commanding officer....if this was happening to one of your beloved family members, WHAT WOULD YOU DO??  He needs to be in a decent hospital with qualified doctors checking him out.  SCREAM at them.  This is a tragedy in the making if they ignore you. 

We are terribly concerned. Please let us know what they do.

Sue in Vancouver, WA USA

[Palace]

Do "whatever you have to do" to get the MRI with contrast ASAP.  It is making me sad waiting so long for my treatment and wondering if more nerve damage is happening to me.  Time is an issue so, do what you must.  I frustraited waiting for my date.  My bloodwork will be done this Friday to check if my liver and kidneys can handle the radiation.  (CK)  Yes, those symptoms surely match AN.  Keep us posted as much as you can.



Good luck,



Palace

[Obita]

Hi Katie:

First off I must say, your husband will be ok if he does have an acoustic neuroma.  We are all living proof that there is life after acoustic neuroma surgery and or radiation.

In addition to what others have recommended to speed up the MRI, see if his cornea responds to touch. Touch it  with a Q-Tip.  If his cornea does not respond to touch, I am afraid he has another symptom of an AN.

Best of luck to you.  I feel very bad for all of you, being you are so far from home.

Kathy O'Brien

[Windsong]

I'm sorry to hear about your husband.

I am a bit a confused however. If he can't get off the couch why isn't he in a hospital?

Is he doing the "I am ok, I am fine" routine whiloe he stumbles around ?

I hear you saying he is not where he can get diagnosis... but I am confused?

Is he the strong silent type not complaining much? This is weird.

Hope you get faster diagnosis and trreatment for what the problem is.