ANA Discussion Forum
General Category => AN Issues => Topic started by: sbrn on July 13, 2010, 10:38:53 pm
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I went to our PCP this morning for a cold and decided to ask if the results of my husband's MRI were in. Wasn't expecting the bombshell that came next. I was told that my husband has an extremely large right sided acoustic neuroma measuring 11cm x 12cm. As I nurse I found that extremely hard to believe, and had the doc repeat it several times. Just doesn't seem possible that he could have a growth that large at the age of 38. He's had almost complete hearing loss and ringing for over 10 years now. He's active duty military and had it evaluated by military physicians approximately 10 years ago. He was told that his hearing loss was due to loud music and hunting; no further evaluation was done. He's developed persistant intense headaches over the last 2-3 years and decided to make another appt. to have it looked at primarily in preparation for retirement.
The MRI was done on 6/29, and the ENT never called with results. I'm not overly confident that the PCP really knew what he was looking at. Just curious if anyone had heard of a tumor even close to this size. Any pointers would be great. We have an appt. with the ENT this Friday.
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I've never heard of an AN that size. My first one was 2.2cm and was close to the brain stem so 11 or 12 cm - I think maybe its mm. In any case, get a second opinion
Sounds rather strange to me
Laz
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We have a gentleman who had an 8cm AN, I think he was the record on our forum. So definitely possible but really unbelievable. Goes by satman
Since they said "very large" it may very well be around that size.
Very strange circumstances that he wasn't notified immediately by your ENT.
I am also a nurse, husband is active duty. I had my MRI done by a civilian ENT, and for some reason or another, he never was notified of the results of my med-large AN compressing my brainstem.
So I found out about my bugger, when I called for my own FU appt, assuming everything was OK. As you can imagine what a shock :o
We live near Seattle, I had my surgery at Madigan Army Medical Center. The doctor there trained at HEI, and is VERY competent. People come from all over the west coast.
Unfortunately, my tumor had been in there for too many years and had squashed the facial/hearing nerves, and there was no choice but to cut and reattach the facial nerve. Other than that, I'm doing well. (my new "well"). No headaches, balance is actually pretty good, because I had already compensated.
Anyway, definitely get this taken care of while on active duty. Feel free to PM me, one military wife/nurse to another :) Where it says "Send a personal message" it will go to me only-hence PM me. ;)
Maureen
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Hi .... I surely hope the results are not correct.
What I'm surprised at is that the doc gave you the results without your hubby being present. With all the HIPPA crapola these days, it dosen't seem that that doc should have told you alone, specially before discussing with hubby.
It seems unreasonable for the ENT not to notify hubby, with urgency, of an AN of such a large size. I agree..... 2nd opinion ..... possibly another PCP or ENT, too.
Greg
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Hi,
if the dimensions are correct, then it is very big for sure :(
I sure hope he can get it fixed soon and I guess surgery is the only option for something that big
Good luck on Friday and please tell us how things turned out.
Kenneth
P.S. I'm also active duty, Royal Danish Air Force. Actually, it was my military doctor who discovered my tumour.
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sbrn ~ Hello, and welcome.
I'm sorry to learn of your husband's AN but I'm glad you've discovered the ANA website and chosen to make use of our discussion forums. I hope we can be of some help.
Although I'm not a doctor and don't usually wish to oppose a physicians opinion, I have to add my skepticism to the others on this thread regarding the measurement of your husband's tumor. I suspect that the 11x12 measurement is in millimeters, not centimeters. However, I haven't seen the MRI and of course, I could be wrong. At 4.5 cm, my AN was considered large, was pressing hard on my brainstem and was judged by my neurosurgeon to be potentially life-threatening with no option but immediate debulking surgery.
The fact that the ENT never even called your husband with the results of the MRI that discovered the AN is also problematic. My PCP called me in the early evening, from his cell phone, when he received the results of my MRI showing the large tumor, which my neurosurgeon later commented was 'probably' growing for 'at least a decade'. This is not unusual.
My only suggestion would be to clarify the actual size of the AN with your doctor and find out if radiation is an option. It may not be if the AN is beyond 3 cm, as it was in my case. Frankly, the ENT physician doesn't seem to be the type of doctor that inspires confidence in a patient. His neglect in informing your husband of his tumor and you having to find out via the PCP is disappointing, at best.
I trust the upcoming consult with the ENT will prove productive and that your husband can have his AN successfully addressed in a timely manner. Our membership stands ready to inform, advise and most of all, support you and your husband as you approach this medical problem. Please stay in touch with us via these forums. Thanks.
Jim
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Hi & Welcome!
I will be following this closely as I am also curious about the size. Regardless of the size, know that this is an incredible, supportive group of people and we are here to answer any questions you might have! If, in fact, it is that large...I would change Dr's for the lack of concern on their part...just my 2 cents!!
K ;D
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Just weighing in with my welcome to this forum.
I, as well, am mystified how anyone could have 11 or 12 cm acoustic neuroma without having very debilitating symptoms. Surely this is mm, not cm ..... at least, I certainly hope it is misinformation on the actual size.
I, also, would change doctors very quickly ..... for several reasons, not the least of which is breaching my privacy.
Best thoughts and let us know what the outcome of all this is.
Clarice
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This IS shockingly large for an undiagnosed (until recently) acoustic neuroma.
Like Laz, I'm thinking that the measurements you gave us should be in millimeters (which would make more sense), but I could be wrong.
I would definitely verify this; get a copy of the radiologist's report.
Moe is right - as far as I know - the record on the Forum is held by Satman who had an 8 cm AN. And he's a very unusual case.
I know lots of docs who give results of tests, etc., to a spouse - so I wouldn't be concerned with HIPPA laws; but that's just my take on the situation.
Also, I wouldn't waste time with an ENT. From my experience, they don't know much about ANs - and usuallly don't treat them. I'd schedule an appt. with a neurotologist and/or neurosurgeon.
Jan
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Thanks for all the replies and support! As suspected the doc was wrong. My husband & I had gone to the PCP together and agreed for info. to be discussed with either one of us, so I believe that's why he shared the info. with me without my hubby present. Plus being a nurse always gets you a little further. I voiced my doubt over the size, but he repeated it several times. I told him I found that hard to believe with no other symptoms besides hearing loss, ringing, and headaches. So, I called the nurse back today and told her that either Greg needed to go down in the record books or the doc screwed up reading the report. She pulled it, and sure enough it was mm. So it's really 12x11x12mm or 1.2cm. I'm majorly relieved since that opens up a lot more options! Needless to say the ENT is going to get an earful (no pun intended) for not calling! Working in the healthcare industry, I've already put out feelers and identified the best neurosurgeon in the area. Works out of Vanderbilt and St. Thomas. Thank God he takes TriCare!
I haven't told my husband yet. He's on TDY until tomorrow. Didn't think it was wise to tell him he had a brain tumor when he's alone on a business trip. I'm sure he will be less than thrilled that I didn't call him immediately, but I wanted to make sure that I was armed with info. and could tell him in person. Tomorrow is going to be a rough day....
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So it's really 12x11x12mm or 1.2cm.
Well, that's a huge relief. An acoustic neuroma of 1.2 cm is considered medium which should give your husband the choice of surgery or radition - although some of that will depend on the location. He should also be able to watch and wait for at least a little while, so don't rush into anything.
I highly recommend contacting the ANA for their informational brochures. They are well-written and very helpful.
Good luck; please keep us posted.
Jan
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I just now read through this thread for the first time and I would have added my skepticism because when I was diagnosed, the radiologist's report stated my An was 8cmx8cmx8cm (rough dimensions here) but as it turned out, like your husband, they had gotten the metrics all wrong (it was supposed to be mm's, not cm's!) :) Hmmm...isn't that what happened to a Mars probe that was sent out a few years ago, but never made it to the surface in one piece? Math, ya gotta love it! :) Anyways, that's GREAT news it's not that huge...now you can concentrate on options as opposed to not! Good luck and keep us informed!
Jay
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An acoustic neuroma of 1.2 cm is considered medium.....
Hi Jan and all.... actually, AN's deemed smaller than 1.5mm is deemed "small" but, as we all know, circumstances such as location of tumor, if its pressing against the brainstem, etc all are taken into consideration as well as it's size. As we also know, there is a +/-2mm "total margin of error" in the dimensions noted on head MRI's... keeping in mind that different professionals may read each one differently (ie: the radiologist vs the radio-onc vs the neurosurgeon, etc) as well as the image "slices" may be different on each machine, done by each technician.
So many factors to keep in mind.
Sorry, I had coffee this am.
Phyl
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Whew,
What a relief! It will be a rough day, but as you know, stress that he has a growth on his hearing/balance nerve which is treatable, rather than "brain tumor". Sounds so much better!
Maureen
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Very relieved to have it confirmed that it is mm, not cm. Still would change doctors ??? ..... for a doctor to repeatedly say it was an 11 cm AN ...... ???
As the others have said, a 1.2 cm AN is small enough to give you several options. Since ANs are typically very slow growing, slow down, take a deep breath, and do tons of research.
As for the privacy issue, I understand now how the doctor really had permission to discuss it with you and that is OK. Let us know how your husband takes it and urge him to join us on the forum.
And be sure to send for the ANA materials. They are very comprehensive and reassuring. They also just released some newly updated information booklets, if you want to purchase any of them.
Best thoughts.
Clarice
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Hi There,
Quite alarming, but not impossible to remove. It may very well be in mm. I would definitely have a second opinion and ask for the actual pictures so you can also see it for yourself.
Vivian
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What a relief to find out the correct size.
Good luck with telling your husband.
Take care,
Grace
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So it's really 12x11x12mm or 1.2cm.
sbrn ~
Well, that's more like it! Of course, no one wants an acoustic neuroma diagnosis but at least the size is quite manageable. As previous posters have indicated, your husband has options. Observation ('Watch-and-Wait') is one of them, along with some form of radiation (if feasible) or surgery. I would suggest you (honestly) characterize the AN as a benign tumor (non-malignant) and stress that it is treatable - or, possibly, will simply remain stable (stop growing) over time. We'll leave the details up to you. The fact that you're a nurse should assure your husband has full confidence in your advice on medical matters, especially when you're presenting him with facts. I look forward to reading the next chapter in your husbands 'AN journey'.
Jim
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An acoustic neuroma of 1.2 cm is considered medium.....
Hi Jan and all.... actually, AN's deemed smaller than 1.5mm is deemed "small"
Thanks for correcting me Phyl, but now I have to correct you :)
I think your post should have said "AN's deemed smaller than 1.5 CM" - at the time of my diagnosis my AN measurered 1.5 cm and I was told it was medium.
Jan
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An acoustic neuroma of 1.2 cm is considered medium.....
Hi Jan and all.... actually, AN's deemed smaller than 1.5mm is deemed "small"
Thanks for correcting me Phyl, but now I have to correct you :)
I think your post should have said "AN's deemed smaller than 1.5 CM" - at the time of my diagnosis my AN measurered 1.5 cm and I was told it was medium.
Jan
I'm busted... if you look at the time I wrote that (6:00am EST), you will see the coffee hadn't kicked in yet. I stand corrected! Yes, I put that in writing! Thanks for fixing my boo-boo! :)
xo
Phyl
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Well I just caught this thread and I'm happy that you were able to get the size corrected...I can't imagine a 12CM AN!!!!
Keep us posted on your husbands journey and we are here to help, so please get him to log in and look around :)
Take care,
Liz
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Jan and Phyl - now I'm jumping in....my AN was 2.3 on May 17, and Dr. Lunsford called it "small".
What's in a word? ;)
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What ever you do, don't trust the Military Doc's. I went to an Air Force Doctor in the early 80's when I lost my hearing. Same explanation was given...noise from the jets, loud music etc. My AN was nearly 5x5cm when I had surgery last July to remove it. Proceed with extreme caution when dealing within the military system...they're overwhelmed, underfunded and not expert in the AN field.
Best of Luck to your Husband.
Take Care!
;)
Doc
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Proceed with extreme caution when dealing within the military system...they're overwhelmed, underfunded and not expert in the AN field.
Hey I take offense to that comment! It depends on the military instillation of course, and my husband is a navy doc, so of course I'm partial ;D
Looks like sbrn has found a physician that takes tricare, so all will be well. BUT I had an excellent military surgeon who trained at HEI, and Madigan Army Med Ctr in Tacoma is a very good, well respected hospital with excellent surgeons and doctors
(okay got that off my chest!)
And as I recall in my case, my ENT who never called me with my MRI results was a civilian ENT! So ya just never know.
Anyway, back on topic. Good luck with your research!
Maureen
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Sorry to push your buttons there Moe. I stand by my comments. That was my experience over a twenty year career...underwhelming at its best. I can't even think of anything nice to say about the Dentists I encountered over the years...oh wait...the suckers were good!
Take Care!
;)
Doc
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Maureen/Doc ~
I realize that each of you are simply stating your personal experiences with military medical personnel and facilities but I believe that whether its military or civilian doctors/personnel/facilities, there are good and not-so-good. In my four years of being a member of this website/forums, I've read many 'horror stories' about insensitive civilian doctors, their unhelpful office personnel and surly hospital staffs. I've also read many very positive accounts of caring doctors, helpful office personnel and cheerful, efficient hospital staffs. Same with the military folks, who, to be honest, are only lightly represented in these forums. That leads me to the conclusion that your level of care is always going to vary, no matter if it's military or civilian. The tough part for military personnel and their families is that, usually, the 'military option' is the only one readily available, making it difficult when the doctors, dentists, etc. are less than top-notch and efficient. This is one facet of the difficulty I believe a nationalized health care system is going to impose on Americans. However, that is a separate issue for another thread on another forum. I'm just saying.
Jim
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So true, Jim!
Sorry you had bad luck with your military experience, doc :(
Basically gotta be informed and be your own advocate wherever you are, eh?
Maureen
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Mr. Scott proves once again he's the smartest guy on the Forum...I sure think so. Thanks for your timely input Jim. No sweat Moe! I'm just glad the Doctor's that tended to my AN were on the ball. My experience with Military Doctor's wasn't all bad, just not what one would expect. I still find hurried care scary, regardless of the source!
Take Care!
;)
Doc
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Wonders when Phyl's gonna whip out the ol' "Get back on topic" stick! lol
:)
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Wonders when Phyl's gonna whip out the ol' "Get back on topic" stick! lol
:)
NOW! ;)
Ok, folks...... ahem.....
Back on topic! And its a whip, not a stick!
Phyl
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Jan and Phyl - now I'm jumping in....my AN was 2.3 on May 17, and Dr. Lunsford called it "small".
What's in a word? ;)
in this case, "size does matter...."
As defined by the ANA:
http://www.anausa.org/what_acoustic_neuroma.shtml
"Tumors are typically described as small (less than 1.5 cm), medium (1.5 cm to 2.5 cm) or large (more than 2.5 cm)."
Phyl
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It's a whip, not a stick LOL
Phyl, I think you should make that your profile saying :D
Thanks for the size clarification.
Jan
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hi - yes, I know the definitions by size...I was just happy when he called the 2.3 cm thing small, even if he should have said medium sized. I felt better thinking of it as small. Silly, I know....
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Correction Jan, it's a feather duster, bu back on topic -
I'm glad that there was an error cm v's mm but doesn't it prove one major point in this whole episode of an Acoustic Neuroma - THAT IS - TO ALWAYS GET A SECOND OPINION (at least).
Over the years, as Jim has said, we have seen countless errors and poor medial advice given. We have also seen terrific outcomes so all is not lost. Iguess, th major thing here is that AN's are very different t the common cold and do require special medical skills. he next step in treatment for a 12mm AN is very differentto somthing of XXXL size.
This is another case of this forum helping so well done to everyone and for "hubby" going forward.
laz
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sorry i'm late on the conversation been on vacation, when i first read this post my heart hurt just thinking of the road that was ahead of him.
thank god it was inaccurate.
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Wonders when Phyl's gonna whip out the ol' "Get back on topic" stick! lol
:)
NOW! ;)
Ok, folks...... ahem.....
Back on topic! And its a whip, not a stick!
Phyl
Blah Blah Blah - So Scary!
:P
Doc
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um, folks.... let's get back to the support here... not the yada-yada's.......
Also glad to hear that the tumor is much smaller than originally reported. Many treatment options available for the size reported and here's hoping the process is as easy as possible.
Phyl
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Wow, the last few days have been a whirlwind. My husband took the news very well. I think he may have been expecting something. We were able to locate his military health records from 1999, and all the hallmark signs were there. Unilateral hearing loss, tinnitus, and fullness. Everything happens for a reason though. Had it been found then, it more than likely would have ended his military career. Now with only two years until retirement, he should be able to finish out his 20. I'm just glad that we're far enough away from a military installation that he has more options in choosing where to be treated.
Since the last post, we've already had our first appt. with a neurosurgeon who's very well known in Nashville. Because of his young age, their recommendation is surgery. We'd pretty much come to that conclusion ourselves from what we'd read online already. There's just not enough long term data out there for the radiation option and the hints of possible recurrence and malignancy in the radiation field are a little scary. My husband wouldn't be comfortable with leaving it in there anyway. He really wants to just get it out at this point. We did learn that it's just starting to emerge from the canal, so I think we caught it at the right time. We've been referred to otolaryngology now for a full hearing workup to determine the best approach. Obviously with being in the military, my husband isn't keen on the idea of 100% hearing loss in that ear. We've also requested a second referral to a neurotologist at Vanderbilt for another opinion. If there's anybody on here who is active duty military, we'd love to hear from you! We're trying to figure out what if any impact this will have on his ability to continue active duty service. From what we've read online, everything points to the MEB process.
That's it for now. Keep the advice coming! It's helping us both!
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Glad to hear that things went well with the news.
I don't live in your area, so can't give you any help there, but so glad you have the option of going out of network to get the bugger out.
Let us know how things progress :)
Maureen
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sbrn ~
Thanks for the update. I'm not in the military and I'm a long way from Tennessee so I'll leave any pertinent information on those issues to others who can respond with useful information for you.
However, I'm glad to learn that (a) your husband took the AN diagnosis well and, (b) he's made a treatment decision (surgery) and you're moving ahead with that. My only advice is to remain focused on banishing the tumor and don't get bogged down with the 'what-if's' to the point where you're second-guessing every decision. You folks seem to be pretty composed and that kind of attitude will be a great help in the weeks to come, as your husband prepares for the surgery and recovery. Never forget that, as so many of our members happily state: 'there is life after an acoustic neuroma'. It may be slightly different in some respects, especially if there is a unilateral hearing loss, but eventually, this too, will recede in life's rear-view mirror and things will return to normal.
Jim
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Thank you for the update, I was curious how your husband took the news. I understand about getting that booger out of there, I had that same feeling. I didn't like walking around with this foreign object inside me. Surgery is a personal decision and if that's the way he wants then he's won half the battle. The decision can be very difficult, so now that he's past the first hurdle I want to make a suggestion (not a Dr. just passing on my experience). Since he is young and only has 2 years left in the military why not watch and wait for at least 6 months or until he has his next MRI and then decide. If its not growing quickly you may not need to do surgery until after he retires.
its just a thought.
Keep us posted,
Liz
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Jim, thanks so much for the encouragement! Thank you Maureen & Liz also! In response to Liz' suggestion of waiting, they really didn't encourage that b/c it's starting to emerge from the canal now. Besides, it's driving my husband crazy just thinking about it and knowing it's in there. He actually feels like the ringing has intensified, which I'm sure is just b/c he now knows why he has the ringing. Besides all that, we'd much prefer going through the general channels instead of only having the option of the VA. Once he retires, that's the only route to take.
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hi, I just had to put my two cents in...didn't realize that he had to use the VA after he retires....we'll get that booger out of there!
Take care,
Liz