My doctor is confusing me

[Nancy Drew]

I was diagnosed with 4mm x 5mm AN left ear in Dec. 2005.  AN discovered by accident.  Sent for MRI because of severe vertigo.  Turns out it was a medication related issue and under control now.  Hearing is good according to tests and no other symptoms related to AN.  However I do have a hard time hearing with background noise, but the doc said that is normal.  Some people are just "wired differently" he said, and it just might be an auditory processing thing.  Had second MRI at six months.  Got results yesterday, and the doc said there has been no growth.  When I asked for a copy of the paper report it said the AN is 4mm x 2mm.  I don't understand why the doc didn't tell me that it is actually shrinking.  That would be good news.  Gonna check with the doc again to see if it is possible that the "5" could have been transposed to a "2".  The doc said to come back for another MRI in a year.  If no growth, he said to just ignore it.  No more MRIs needed.  Said to just be alert for symptoms like hearing loss, tinnitis, and plugged ear.  Although I would love to just "ignore it", I wonder if this is a good idea.  Can't these things have a rapid growth after not growing for a long period of time?  I am beginning to think that I should get a second opinion or am I just overreacting?  Since it was found by accident, maybe the AN has been sitting there for a long time.  Is it possible that it could disappear altogether?  I am 47 years old so I guess it has time to grow.  I feel so overwhelmed and don't know what I am suppose to think or feel.  Thanks for any input.   

[tony]

I am very pleased that your AN  is small and static or maybe even shrinking
About 1-5% do just simply fade/die of their own accord (so good news)
It is possible that they outrun the blood supply and die off.
However it might be wise to keep a good watch on it for a number of years
(annual MRI scans - routine check ups etc)
- if it does not move in say 5yrs  - then fine, leave it.
Sadley, 12 mths no growth may just be a dormant period
and yes they can spring to life afterwards
But they are still slow growing
(the record no-move for an NF2 type tumour is 9 ys - then growing again)
Slightly different to yours - but worth thinking about.
In terms of the hearing loss - background noise causing hearing difficulties
are typical AN symptoms - maybe 100+ on this list would describe a similar
situation causing problems.
So your prognosis would be described as "Watch and wait"
My advice is make sure it is done properly and for a while yet.
Good luck and good health
Best regards
Tony

[Battyp]

I agree with Tony...I was told and you'll read the average growth rate is 1 to 2mm a  year  however, with that being said I was also told that they could have a growth spurt which is what they think happened to mine since I went from tinnitus to no balance in 8 mos time.  Also the difference in calculations could be contributed to a difference in radiologists and measuring techniques.  Personally, I vote for it's shrinking I like that theory better!

You need to find a doctor who has experience with AN's.  My ENT told me monday that the average ENT does not see enough of these to give valid treatment options.  Interesting I thought coming from someone who i'd think knows.

[HeadCase2]

Nancy,
  One thing that could be happening with the difference in measured AN size from the two MRI tests, is that MRI typicllay examines "slices".  By that I mean that a particluar MRI image is on one particular plane through the head.  Depending on where you place the planes used for the images, the measured size of the AN would vary.   If we image through the center plane of a tennis ball, we would measure it as about 2 inches.  But if we image through a plane closer to the edge of the tennis ball, it would appear to be a smaller size.  Your AN is fairly small, so I would think that the differences in measured AN size by MRI would vary in the same way.
Regards,
 Rob

[russ]

Hi Nancy!
  MRI has an inherrant error potential of + or - 1 to 2 mm. That could help to explain the difference.
  I have a 2 x 4 mm. Meningioma tumor which mysteriously appears one year only to reappear the next.
  If you are comfortable asking for another opinion and will be troulbled by not, I guess I'd ask at another facility or at least let them see the MRIs themselves. Some films have ruled sides with measurements like a ruler, others, not.
  If you send the CD'd MRIs to HEI, they will return call with an opinion.
  Best wishes!
  Russ

[AN?]

Hi Nancy:
My AN is 5mm size and have been diagnosed in May this year.My age is 37yrs.  I am also in wait and watch situation. These tumors have very slow growth. 1-2mm in size per year. Also, machines are sometimes not good enough to capture very tiny differences. So the doctor might have been happy if the size of your tumor shrinked in both directions. That could have been a good indication of shrinking than doubting if it is the tumor shrinking or machine artifacts.

I strongly feel that you should not ignore but go on checking the tumor growth annually by MRI.

I also have no symtoms, except tinnitus. I do have problems in identifying one sound in background noises. And my doctor's suggestion is , that should be ignored. No one wants to open the head, both as patients and doctors, unless necessary. They have warned me by taking the risk of wait and watch I am takling the risk of loosing hearing whcih anyway is a risk factor for surgical option.

I was equally concerned about my futrure, in fact I am still concerned, but I think the best way to look at these tumors is year to year of quality life. At least thats how I have kept my moral high.

best wishes
Anamika

[lthompson]

Hi, I too am in the "wait and watch" mode.  I have a small AN first MRI said it was 7mm, second MRI said it was 5mm, third MRI said it was 6mm, my doctor said they do vary depending on the type of machine and radiologist reviewing the images.  My fourth MRI showed a slight growth from 6mm to 8mm in a span of 14 months, but my doctor said not to worry because the first one was done on a 1.5 tesla machine and the next one was done on a 3.0 tesla, and the different type of machines sometimes will show different measurements.   I was diagnosed in march of 2004 and have gone every 6mos since then (or right around there).  Since March of 2005 I have shown no new growth.  My doctor recommends yearly MRI for the rest of my life regardless if I decide to treat or continue to wait and watch at this point.  I don't have any real significant symptoms and hearing is still perfect so that is why I am reluctant to treat at this time, with the understanding  of all the risks that go along with not treating at this time.  So time will tell, and I do go every 6 mos because I get nervous and want to make sure nothing is going on.  If it starts to show growth, I will have it treated via radiation, cyberknife or gamma knife, not sure, but that is the route I would take.  For now, I would recommend yearly MRIs and watch for any change in symptoms.  Good luck and I sure hope that yours was shrinking that would be great.

[Desilu]

Hi Nancy,

My tumor was 4mm x 3mm when I was first diagnosed. That was in 2000 and I was 41 years old. I watched and waited for 5 years. I had all of my MRI's done at the same place each year. In 2005 the hospital got a new MRI machine and I went in to have my annual MRI. The results were that the tumor had grown 5mm x 8mm. I believe the newer machine was more accurate. Now at 46 yrs of age, I felt it was time to get this thing out! My hearing was still intact so I elected to have surgery. I am now 47 and 11 months post surgery. Only lost 10% of my hearing. The only problem with waiting is that if the tumor grows and you loose your hearing, surgery or radiation will not bring it back. That was one of the deciding factors for me. I will now go annually for the next 5 years to see if there is any regrowth. Hope this helps, Ann

[Nancy Drew]

Haven't read my posts for awhile because I have been busy forgetting that I have an AN at all.  It was reassuring to read what all of you had to say, and I appreciate the comments and suggestions.  Glad to know that this site exists.  As I muddle through life lately, I have no new symptoms surfacing.  The background noise thing is annoying at times, but I just ask people to repeat or speak up.  They usually comply.  The doc I see has some fancy title, not an ENT.  He told me he sees around 45 ANs a year.  He says 1/3 go for gamma knife, 1/3 surgery, and 1/3 watch and wait.  I will definitely go on your suggestion to get the MRIs at least annually.  If it has grown at my next MRI, I will go for a second opinion.  In the meantime, I will just go with the hope that the dang thing will shrink or just sit there and decide not to grow.  It's a  bummer knowing that the AN is in there, but I guess we all have to take what we have been dealt.  Thanks for the support everyone and best wishes in your journey.  Nancy