ANA Discussion Forum
General Category => Inquiries => Topic started by: 5frys on October 31, 2006, 06:37:16 am
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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
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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
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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
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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.
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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!
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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!!!!!
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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
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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
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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
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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
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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.
       Paul
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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
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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
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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
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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.
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Katie Here............Good news! We went back to the Dr. and had a heart felt talk with him and told him the truly serious nature of my husbands declining condition. It was a tearful discussion. After admitting that there isn't much they can do for my husband on this island, they are medically flying him to either Landstuhl medical center in Gemany or England for testing. Thank you all for helping usmake the decision to go BACK to the Dr. and demand further help. I will continue to keep you posted.
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Thank goodness katie..I was getting my bat wings ready to fly and come get you guys! Of course I had no idea where you were. Please keep us posted on your husbands outcome. Sounds like him and I took the same path only I was state side and still got bungled. How come he got to lose weight? I gained about 60 pounds when everything started...must be woman's hormones..the guys lose the woman gain.I'd be more than happy to share my extra with him :-*
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Katie:
I came upon this thread a bit late in the 'story' but after reading through the posts - yours, especially - I was pleased to learn that you were able to start the process of getting off the island and having your husband get that much-needed MRI-with-contrast to help determine whether he has an Acoustic Neuroma or, if not, to find out what is generating the symptoms you've described, which do sound very 'familar' to most of the gang that hangs around here.
Remember, an Acoustic Neuroma is almost always benign - not cancerous - and is operable. That's the good news, as it were. The not-so-good news is that not all neurosurgeons are equally experienced in AN surgery and if the surgery (and/or radiation) is not done correctly, post-op problems can often result, as, unfortunately, some of the folks on this message board can verify.
If the MRI scan does show your husband has an Acoustic Neuroma - and this is just my personal opinion - I would beg the military for permission for your husband to take some sort of medical leave then take out a loan (or do whatever else was necessary) to enable him to have it removed by a surgeon in the U.S. with lots of experience performing AN-removal surgery. When my AN was discovered my wife told me that whatever surgeon I ultimately chose, even if he or she were 3,000 miles away, we (she, really) would find the money, deal with the insurance hassles and 'make it work'. I loved her can-do attitude. We were fortunate to find a caring,compassionate neurosurgeon just 30 miles away who had decades of experience with AN removals and was considered by his peers to be 'the best in the state' for this specific operation. My surgery and recovery were both very successful and almost 5 months out, I'm doing great. Of course, I wish the same for your husband. Please keep us informed as to what is happening. It may sound trite in these cynical times but, we really do care. :)
Jim
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YEEAAAAAHH Katie ; get packing girlfriend. Wishing you & your husband all the best! & GET THE MRI with contrast!!! Nancy
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WHEW! I'm feeling much better about this!! Good luck with your travel, the doctors and treatment. Keep us posted. Give your husband a big hug from all of us. *Group Hug*
Sue in Vancouver USA
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Definately looking better and I am sure answers will be forthcoming soon
a couple of thoughts......
1) Make sure a full list of symptoms is written down for the new docs
- your husband maybe tired, or simply forget by the time he meets them.
2) Plan on the basis they do find something - he maybe away a week or so
Think out in advance what you might want to do
what else do you have to arrange ?
Might be easier to work it out now (face to face)
than over some international phone link ?
Keep in touch
Best regards
Tony
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Great news Katie. Thanks for keeping us posted.
Can you go with him? I sure hope so, as you are the AN expert.
Best of luck, Kathy
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This is Mike here. Katie is normally the one doing the emails, instant messages and so on. I just want to personally thank all of you for your advice, lessons learned and words of encouragement. At this point, only the Lord knows what is really going on with me and I'm sure all will be revealed in His time. We (probably Katie) will keep posting to this discussion board to keep everyone informed of the progress. Thanks again to everyone; this is a great forum and you're doing a wonderful thing by helping folks like us out. ~Mike
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Good luck Mike - we will be thinking of you - thats why us posties stay on.....KO
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I haven't yet posted on this thread, but I've been reading and am so happy to see you'll be able to get a much-needed MRI. Your spunk and diligence in getting the right treatment will continue to work in your favor. And, as others have said, if it is an AN do whatever you can to get to a doctor with lots of AN experience (hundreds of patients). It can make a big difference in the outcome.
Good luck, and please keep us posted!
Another Katie
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I just had my 4th one in little over a year today!
Paul
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Really happy to hear you are now able to get better treatment/diagnosis!!
Lots of best wishes, and let us know how things proceed.
Windsong
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Thought you'd all be interested in an update. It's very slow going here. We finally got clearance to get off the island for the MRI. My husband is so sick that he is just trying to hand on. He isn't able to drive much anymore. We were hoping he would get off the island quicker, but now we are just happy to have an appt and upcoming MRI on Tuesday, Nov. 14. We fly out to Germany on Monday. We hope they find something and that he gets really good docs so that we don't come back to the Island empty handed (I think this is his biggest fear). Pretty soon he will be unable to work, he is so bad. They keep setting up appt. with ENT's. Can they properly diagnosis Acoustic Neuroma? We were thinking he should be seeing a Neurologist. But since the Doc here said his CT scan was clear and that meant no tumor, he would only refer him only to the ENT, so we were just happy to get him to Germany AND to get the MRI.
He is seeing a local Island ENT in the meantime and we are going to the bigger city on the Island for tests, but still no MRI machine here on the Island.............things are very different here and I just hope my husband can hang on a few more days.
Thanks again for everything.............
Katie
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Mike & Katie...
Be assured that you have the hopes and best wishes from everyone of your new 'family' for a speedy and successful outcome.
Best Regards
Derek
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Dear Mike and Katie:
I am so sorry this is taking so long for you. At least now, you have a date with the MRI machine.ÂÂ
If it is an AN, it will glow like the sun with gadolinium contrast injected half way through. I hope you can get an answer that same day. You should be able to if you insist. Without contrast dye, they are invisible as are they with a CT scan.
Thank you for the update. We are all very concerned about you two.
Kathy
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Good Luck Katie and Mike, I hope all goes well in Germany. I am prior military, I know how slow the military works! You are both in my thoughts as you wait for your appointment date.
Hang Tough!!!
Denise
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Katie, I have been reading this thread and thought I'd chime in with a contingency list. If your husband gets referred for immediate treatment, will you have the time in Germany to get that done? Will your travel plans allow changes for a departure date to go back home? Do you have family to take care of things at home until you return, if your stay is extended in Germany? Sorry to be the devil in the details!
Best Wishes to both of you!
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Katie and Mike - I will be praying for good results on the 14th. Please be sure to post again and let us know how things go.
Laura
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Boppie................We just moved to this "remote" military assignment island, less than 3 months ago and since the military lost our household goods we are without most of our creature comforts........so life has been, shall we say, an adventure. :-\
We have 3 children and Mike's sister has flown here from the states to stay with our 10 year old twins, and 4 year old.....all girls for as long as we need her to.  We also have VERY supportive family in the states that are "standing by".
We are very fortunate and don't know what the future holds as to the news we might find out in Germany. We just hope they have answers that we have not been able to get up until now.
I appreciate your questions and concern.
With God ALL things are possible.
Katie writes
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If there is an AN, it will show as a bright white blob in the skull on the MRI - pretty hard to miss (as long as they use the contrast dye). Unfortunately, the radiology techs who run the test will probably refuse to tell you anything about the results. At least in the States, the MRI has to be read by a radiologist - the person running the machine can't tell you anything. But even if the tech won't say anything, you can either insist on seeing the films yourself or insist on getting a report the same day. Where you are traveling so far for this test, I can't imagine waiting around for several day to see what the radiologist says!
It's so wonderful that you have such a supportive family. That can make all the difference in the world.
Another Katie
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Hello again,
Since your husband is so sick with this, I can't imagine that his doctors in Germany won't be all over this as soon as he has his MRI. Yes, with contrast. Ask them if that is what they intend to do. One would assume they aren't total idiots and contrast would be a "given", but it'll make you feel better by asking them to know for sure they are covering the bases. Ear Nose Throat doctors are very qualified to figure out what is wrong. Mine didn't, but that's another story! A neurologist eventually ordered the MRI, and then my glowing AN was there for all the world to see! I wish you a safe trip to Germany and the best doctors to look after your husband. Answers are forthcoming!! Hooray.
Hang in there,
Sue in Vancouver, USA
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Mike here...thanks again for all of the help and support. I do have one question. One of my symptoms that I haven't seen listed as an AN symptom has been pain at the base of my skull at the back of my head. Kind of feels like a golf ball stuck right there. If I rotate my head right I get a sharp pain there and the fullness in my ear really intensifies. Just wondering if localized pain in that location is something anyone else has experienced. Thanks again.
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Mike,
From looking through descriptions by people who have been diagnosed with an AN, "pain at the base of the skull", would probably not be a normal diagnostic symptom. But people have described all sorts of various head pains.
Regards,
Rob
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Yep .. I had bad lower neck pain .. and others here ( mainly people with large AN's) .. but AN can cause headaches or neck pain .. I guess it depends how low the AN is or what muscles are effected ...
ps .. you rather have the neck pain .. it has completly gone away since my surgery!! ;D
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Hi Mike:
Yep, I had the same thing. I was told it was from trying (unconsciously) to keep myself upright. The AN had destroyed my balance nerve so I was compensating badly and my posture was suffering.
Good luck Tuesday.ÂÂ
Kathy
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Did you all feel so dizzy that you would fall over? That has only happened to me on a few occassions. Most of the time I just feel very...unstable may be the best way to describe it. I have a hard time explaining this to doctors, because I don't have virtigo where the world is spinning.
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Yes - we all are only guessing here, but basically compression of the balance nerve
has some weid effects - falling the obvious one.
Between now and diagnosis - reccommend you stay clear of ladders
- or any domestic situation where you might fall hard
You may have trouble in low light situations, or carrying something heavy,
Sharp turns or simply standing up.
Any kind of alcohol will make it worse and quickly
Basically, take it easy, till someone really knows whats wrong.
Have a good trip on mon
Good Luck
and Best Regards
Tony
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I get to watch objects move and jump at me! It happens to me lately every evening. It's making it very difficult working and driving. Nothing is really spinning but my eyes just feel like they can't keep up with my head. Last night at work my legs felt like they might buckle and a few times I thought I would fall but didn't. I'm a waitress and I'm not sure how much longer I can work. Difficult job with a tumor. I'm just going to keep working until I do fall, lol.
I think we all experience things in a different way when it comes to ANs.
Lana
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Hi Mike and Katie:
Shortly before Thanksgiving of '03 and 4 months prior to diagnisis, I had what I thought was the worst flu of my life. I put up with the dizziness and vomiting for 4 days and finally went to urgent care. The Dr. there gave me some dramamine (which helped like you wouldn't believe) and told me to see my GP. I was holding on to the walls while walking durring that time. I did feel like I would fall over.
I will be thinking of you in 48 hours!! Kathy
ÂÂ
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It is almost 2:00 pm in Germany -
Hopefully Mike's MRI is done and he and Katie have some answers.
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Mike here...first let me thank you all once again for all your advice and encouragement. The MRI that I had done in Germany showed no AN, so we spent several more days there going back and forth between the ENT and the neurologist to try to figure out what was going on. It seems that the conscensus of both doctors is that when I became ill in Iraq it was some sort of virus that caused a severe infection in my inner ear. This was the ENT's explaination for the tinitis and other ear related symptoms. The neurologist has the same opinion of what is causing the "tingling" sensation on my face. In a sense it makes sense to me that a viral infection affecting the same area where an AN would be would result in similar symptoms as AN, so we're hoping the diagnosis is correct. The neurologist is treating the nerve related symptoms by prescribing neurotin. As for the ear related problems, the ENT didn't give much hope of any treatment other than saying things need to run their course and the tinitus may never go away.
So, once again thanks for all of the support out there. This truly is a wonderful and compassionate thing you've got going on here...keep it up!
Mike sends.
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Mike and Katie:
What great news. Another possible AN that ain't!! That does not happen too much on here. Congrats.......
I hope your symptoms ease up soon so you can get on with your life.
Thanks for the post and thank you so very much for serving in our Military.
Kathy from Minnesota
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Mike and Katie...
Great news for you both....looks like its going to be a super Xmas for you and a fantastic New Year.
Very Best Wishes
Derek
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Mike and Katie - excellent news. I'm glad you finally got the answers you have been so desperately in search of! Best wishes for a speedy recovery!
Laura
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Mike,
It sounds like the doctors are thinking it's viral ventriculitis, a viral infection in the balance sensing organ. If so, it should go away in a few weeks. Best of luck to you. I'm sure getting the negative MRI results was a big relief.
Regards,
Rob