ANA Discussion Forum
General Category => AN Issues => Topic started by: Bertrand on May 12, 2011, 08:13:02 pm
-
Hello everyone,
I was diagnosed with AN a couple weeks ago, and I have been reading a lot about it since, thanks to this group and the literature the ANA sent me. Thank you for doing that.
I have a couple questions: when it comes to the size of the AN, some of us use 1 number, some us 2, some use 3. It is confusing to me. For instance, my AN is 0.6(AP Dimension) x 0.7(craniocaudal dimension) x 1.4(transverse dimension). What is the important number here, so I can compare to others? Also, I have been advised by my ENT Doctor to watch it, and by my Sinus surgeon to do the Gamma knife. I am 42, in good health, and I do not see the point of waiting if the AN will not shrink anyway. Any thoughts?
Thanks!
Bertrand
-
Hi,
Unfortunately different doctors measure AN's differently. There is no universal way to measure them. When I recently asked a doctor about this he siad it sometimes depends on the type of MRI machine used- different machines give different measurements, and sometimes it's the way the radiologist interprets the MRI. In the long run it really doesn't matter if it's measured by 1, 2 or 3 numbers. When the scans are evaluated by the neurosurgeon, neurotologist or radiosurgeon they are not just concerned about size, but about location and patient symptoms. This gives them the whole picture. The important thing is to take your time to gather information, get a few different opinions and make an informed choice for your treatment. :)
-
ANs are 3-D objects, so the most detailed reports contain all three dimensions. Craniocaudal is top to bottom. AP is front to back. And tranvserse is from side to side. These estimates may vary slightly based on the angle of measurement. The transverse dimension is an important quaint, as it provides information about the degree of brain stem compression. Depending on how the radiologist reports it, the transverse dimension may or may not include the portion (i.e. small tail) that is located inside the internal auditory canal. From the sounds of your measurement, I think that in your case they have included that little portion in the measurement, since the transverse measurement is significantly larger than the rest.
With regards to choice of treatment, with small tumors it is sometimes advisable to wait and get a baseline for the growth. There are several cases here of people who have followed this conservative management approach and have not noted growth. The good news for you is that your AN is still small, leaving plenty of time for research.
Marianna
-
Hi Bertrand.
And welcome. Of course I'm sorry for you to be here, but since that cannot be helped, you will find help and support on this forum.
You have been offered good advice so far and most importantly - there is time to consider options. For some, waiting is the best approach since the tumor may not grow any more. For others, treatment is the choice - either radiation or microsurgery. I wish you the best in your quest for answers.
Best regards, Kenneth.
-
Hi Bertrand;
I believe the largest of the dimensions is the one to watch. Of course, if you ever elect to have radiation, tumor volume will be calculated by computer. Radiation dosage planning is done by volume, I believe.
Re, 3 figures and an odd shaped AN ( all are ); Of course dimensions in all 360 meridians would have to be known to be exacting, but Drs suffice with one, or 3.
Same is true for optical prescriptions also. Axis is given using just one meridian when visual astigmatism actually occurs in 360 meridians ( 360 degrees in a circle ).
It's hard to explain exactly...
Best wishes in this, Bertrand!
-
Bertrand ~
Hi - and welcome. I'm pleased to learn that as a newly-diagnosed AN patient, the ANA has been helpful to you as you attempt to deal with your AN and understand your options. The AN measurement question has been accurately addressed in prior posts so I'll confine my comment to suggesting that observation of your AN is prudent because, although it will likely continue to grow, (a) it may not (possible but not probable) and (b) the doctor wants to determine the rate of growth (if any) and whether or not the tumor needs to be addressed immediately and then, by what method (surgery or radiation). My opinion - and I'm not a doctor - is to follow your physicians advice and wait 6 months (not a year) then have another MRI scan. If tumor growth is noted, then you may want to consider having the tumor irradiated or surgically removed, as you decide. However, whatever your decisions concerning your AN, we'll support you and do our best to continue to be of help to you as you travel down this sometimes bumpy road.
Jim
-
Bertrand
Welcome to one of the best places anyone could be who discovers they have joined the AN club. I am also a Watch + Wait. My tumor is a little smaller than yours but I think I could say you have some time to learn about your predicament w/o too many folks on this forum fussing at me. I've had 2 MRI(s) now so I think I have one piece of advice for you. I was very nervous after the first MRI because I had no measure for growth. After the second one I felt much more comfortable in my W+W status. I haven't jumped to the conclusion that it will never grow. What has happened is I've been able to relax and slowly absorb information. I've also learned that this group is a very positive place and some very strong people hang out here.
So as long as your symptoms don't get any worse and your tumor doesn't grow don't panic.
Best wishes.
Glen
PS One of the biggest adjustments for me was getting the hearing aid. Now I love it.
-
Hi and sadly, welcome to the club! I agree with Jim Scott...the absolute best thing you could possibly do at this point is listen intently to your physician(s) and follow their recommendations. Like Jim, I'm not a Doctor either, but do speak from experience and the benefit of having followed Doctors orders...and am better for it. I know, the thought of allowing a "tumor" to remain in your head and likely grow is disconcerting for sure. It goes against the natural instinct to rush and have it plucked out just like you'd flick a bug off your face rather than let it crawl up your nose and build a nest - Great comparison right, you don't have to tell me, I know! :P Those Doctor types, they're pretty darn good at what they do and wouldn't steer you wrong!
Take care!
;)
Doc
-
I wanted to stress something that has been said many times here: Experience in AN treatment is very important. Not necessarily all ENTs and neurosurgeons have AN expertise, and they may not provide the best advise. So it is important to seek out expert opinions, even if this means that you have to look for it further away. An advantage of having an AN is that they are slow growing tumors, leaving plenty of time for research most of the times. Successful outcomes are very likely no matter what treatment method you use, when you are treated by experts.
Marianna
-
What she said ++++
-
Hi, Bertrand:
The only thing I will add to the excellent advice given here is that you should consider treatment sooner rather than later if you have noticed your symptoms getting significantly worse. The tumor can damage your cranial nerves over time even without growing larger.
That said, some people on this forum have had very few and mild symptoms (which correlates with nerve health) with fairly large tumors. And Dr. Derald E. Brackmann (famed HEI neurosurgeon) once told me he has seen some cases of tumors not growing for 20 years.
Please understand that each type of treatment carries risk of damaging the very nerves you wish to preserve. So, my lay advice would be this:
1. If you are experiencing mild and stable (not progressing) or no symptoms, wait for six months until you get your first follow-up exam in order to determine whether the tumor is growing or not and to establish a baseline.
2. If your symptoms are severe or even moderate but worsening rapidly, consider getting treated sometime in the next 2 or 3 months in order to preserve what remaining function you have . Heavily research your treatment options (this forum is a valuable source of information) over the next several weeks before you decide on which type of treatment you want and, more importantly, who you want to perform it.
On a more pedagogical note, all three tumor measurements are important. If only one or two dimensions are recorded, growth along the third axis may be missed (especially where the trend is subtle but progressive over the course of several MRI series). Marianna astutely noted that the transverse measurement is usually of greatest concern. Growth along the cranio-caudal axis can elevate the trigeminal nerve and possibly cause facial neuralgia. But this shouldn't concern you, as your tumor is so short in height that it is not likely to be seriously impacting your trigeminal nerve. I only raise this point to illustrate the importance of getting a report on all three measurements. Your doctor appears to be on the ball.
Best wishes,
TW
-
I am 3 years watch and wait and now will have surgery for continued growth. I find myself saying I wish I had done something (surgery or radiation) 3 years ago for a few reasons, I was younger, healthier, it was smaller and I would not have to worry about it for the last 3 years. But as the others have said, research your options, go for the other opionions/consults (House) and probably give yourself the the next 6 months at least to do your homework. Best of luck.....remember this forum is a wealth of information and support.
-
Hello everyone,
I want to thank you all for your very very valuable input. I am very grateful, and happy to have found this forum.
As of today, I am thinking about waiting 6 months and then go for a fractionated series of radiation.
Now, I live in Buffalo NY and I wonder if any of you know how good Roswell Institute is a good choice, or is there another place I should go?
Any help would be greatly appreciated
Bertrand
-
Hello Bertrand,
And welcome to the ANA forum. Let me just add that all three dimensions are probably used by the doctors in considering a recommedantion for you. For example, all three dimensions would be used in calculating a tumor volume, which is important when assessing the tumor for potential radiosurgery.
It sounds lilke you've been doing your homework, and considering your options carefully. It's good that ANs are usually slow growing, so you have plenty of time to consider the best course of action (or W & W) for you. The bad part is that with AN, the choice is not always clear cut and you have to deal with some uncertainty.
Good luck to you. And keep asking questions.
Regards,
Rob
-
Betrand,
Welcome to the club that nobody wants to join...but I am SO glad you found the Forum!
When my sister was diagnosed 6 months prior to me, I started reading here.
Then I realized my symptoms were similar :o
I had problems with my hearing for about 12 years but no one recommended an MRI - so I was in Watch & Wait and didn't even know it!
You have had some wonderful advice and tips from others.
One thing I had to learn the hard way was getting checked by an expert, someone who deals with ANs (since my local doctors obviously didn't consider it.)
I ended up going to a major medical center to ask for the first MRI, then an MRI 6 months after the first, and continue in W & W for year 3 after diagnosis.
You will find your own path, one that you are comfortable with.
Please keep us posted on your progress!
And thanks for asking the question about the measurements - after 3 years, I am still learning!
Sincerely,
Sue
-
Well seems you and I are in the same boat!! Just diagnosed April 19th!! I have been having symptoms for 18 months and just got to the right place to be diagnosed ::) I had opted for W&W myself, however went to an AN specialist who gave some encouraging prospects for removing mine sooner than later. I still have excellent hearing, and my tumor is pushing on the brain stem. Also, my tumor is farther away from the workings of the inner ear, so the thought is , take it out before it has the chance to grow into ear canal and possible cause damage and hearing loss. I saw no less than 5 doctors, all shapes and sizes and specialties and received 4 different opinions. Don't be wary by seeking out professionals for possibilities of outcome. You have time to figure this out. I have opted for the surgery, possible in October, And I pray for the best.
Best of luck~!
Cindy
-
Welcome to the board. I an new here too. I wasn't even given a size, other than 2.5 cm (I think). I wasn't given any other sizes. I guess they measured from one end to the other.
Regardless, I chose the Gamma Knife as there is one right here where I live. I had it done 4 weeks ago. I won't have an mri for 6 months so I won't know anytime soon if it worked.
I hope your radiation goes well if that is what you choose. It is much simpler than surgery, based on all I have read on this site, but some people do not have a choice due to the size. I don't feel any different since I had the Gamma Knife. I am still quite deaf in my right ear, have balance issues, and fatigue. I guess it takes a while for things to get better, or maybe they won't. Nobody knows at this point.
Good Luck with your surgery and hope all goes well and you can get rid of the AN sooner than later.
Cheryl :)