mom of 23 yr old recently diagnosed AN

[km5]

Hello everyone,
I have been lurking since Monday when my son was diagnosed with AN.  I am grateful that this site exists, and between the site and other internet readings I feel like I understand the situation.
In some respects my son is very lucky.  He felt his hearing in his right ear was decreasing, and went to a very pro-active ENT who found an abnormal hearing loss in the tests done in his office, and sent my son for a MRI. The MRI found a 4 mm AN, which I understand is pretty small.
We are also very fortunate because we live in Los Angeles, and this ENT in a suburb near LAX happens to know Dr. Brackmann at the House Institute, and arranged an appointment for our son.  Our son went on his own for the first appointment, and my understanding is that Dr. Brackmann recommends surgery with the middle fossa approach.  Dad and I are going with our son to see Dr. Brackmann at his next appointment next week.
So here's a couple of questions:
1)  Since the tumor is small, can it possibly be just watched?  The symptoms are minor and liveable.  The surgery sounds pretty drastic.  I understand that the tumor may grow very slowly, or fast.  We just don't know.  But if they're ready to schedule the surgery right away should we just go for it?
My son is handsome, strong, and recently graduated from college.  His life is in front of him.  He is insistent upon walking across the stage for graduation in May, and not risking having a possibly deformed face as he does so. 
2)  It seems, in reading the med literature, that the stats re no facial nerve damage with a small tumor are in his favor (around 96%?)  But the stats re losing hearing completely are unclear to me as the studies seem several years old.  Are we talking 50/50 still?
Thank you all for the support you provide.

[danalynn]

I was recently diagnosed with a 1.5 x 5 cm AN.  Since your son's AN is so small, I would think that radiosurgery is a good option for him.  That is what has been recommended to me by Dr. Chang at Stanford.  I found out about Dr. Chang from other people on this discussion forum who have been treated by him.  He performs both surgery and CyberKnife radiosurgery.  I would do some more research before making a decision.  Since his tumor is so small, you have time to consider all of your options. 

Good Luck!

[sgerrard]

At 4mm, he can certainly wait until after graduation, especially if it is only two months away. Most doctors I think would put "watch and wait" on the list of options for that size. Many ANs do grow slowly, and some don't grow much at all. The one issue would be hearing; if it continues to decline, then acting sooner rather than later gives the best chance of preserving it.

I think you are right about the facial nerve not being at much risk with such a small tumor. The hearing preservation with middle fossa surgery might be better than 50/50, but  not much higher. Radiation would be a little higher on hearing preservation, but still only about 60-75%. It may also depend on how much hearing he has lost at the time of treatment.

I say wait until June before doing any treatment, so at least the graduation is unaffected. At that point, it might be reasonable to wait until September and get another MRI, to see how it is doing, or you can do treatment during the summer. Meanwhile, see what Dr. Chang at Stanford says about doing Cyberknife, as danalynn suggested. He might very well suggest waiting a while as well - he seemed to think mine was pretty small at 8mm.

Best wishes to you and your son, and be sure to tell him that he will be fine in any event, he has a good full life ahead of him.

Steve

[LADavid]

Hi KM5
I'm with Steve.  Your son does have the option of time with an AN as small as your sons.  I can only address the Translab option but I want you to know, I live in LA (Hancock Park area), I had my AN surgery through the House Clinic in December, and am available to talk with you and your son.  I can't drive yet but I am getting pretty adept at the Metro.  I will tell you this, you're in excellent hands with the House Clinic and St Vincents.  Maybe on a future visit to House I can meet you and your son and tell you about my experience.  I know nothing about radiation treatment, but maybe your son would like to meet someone who has had an AN.  Just a thought.

My best wishes,
David

[leapyrtwins]

Km5 -

I'm with David and Steve on this one.  Due to the size of his AN, your son should be able to watch and wait for a period of time.  Radiation would also probably be a great option for him.  I had surgery myself (retrosigmoid) because it was what I thought was best for me (and it was).  However, if my AN would have been smaller, I would have definitely given more consideration to radiation.

It seems from what I've read on this forum, that the docs at House have a tendency to recommend surgery because that is what they specialize in.  I'd check out Dr. Chang since many have had wonderful results with him.

Just my opinion for what it's worth.

Good luck to you and your son,

Jan

[Betsy]

Hello,

Your son may be done with college, but the studying isn't over...he's going to learn a lot about ANs very quickly.  One of the important things to remember is that at 4mm, your son has options.  There's no going back after surgery, so it's a good idea to get input from as many doctors as you can.

I can't imagine getting that kind of news at age 23; your son must be quite a guy to be handling it so well.  He's lucky to have supportive parents.

Betsy

[Jim Scott]

Hi:

I'm sorry your 23-year-old son has to face this issue but he does seem to be handling it well.  Ah, the resiliency of youth.    

I'll simply echo the chorus that has already suggested that, with such a tiny AN, your son has treatment options, including non-invasive 'radiosurgery' (radiation).  I'm a little surprised at the urgency regarding surgery Dr. Brackman has shown, considering the small size of your son's AN.  Retaining hearing is always a priority and, should your son choose to have surgery, the middle fossa surgical approach may be the best way to go - but I can't offer a medical opinion as my MD license got lost in the mail or something.   

I would definitely not make a move in any direction before your son's May graduation.  It's close enough not to pose any growth problems and he can always address the AN in the summer, or even later if it doesn't grow and his symptoms don't increase.  If his youthful impatience is an issue, some research should convince him that rushing into any treatment, especially surgery, is not wise.

I trust you'll be a frequent visitor here and that we can help you and your son better deal with this challenge.  I'm sure he'll be O.K.

Jim 

[km5]

I just returned from work and read all of your kind and helpful messages.  On Monday we are seeing Dr. Brackman, and I am armed with questions, particularly about waiting, as well as questions about the most recent radiation studies.  It seems like there's a real split between the surgery folks and the radiation proponents.   I am leaning to the "watching" side for a few months as we don't know anything about the rate of growth/non-growth.  For all we know this neuroma could have been there at the same size for years, right?  We have no baseline, it is small, so what's the harm in trying to determine whether it's growing at all....I guess we'll hear from Dr. Brackman Monday.
Thank you all again.

[km5]

Something quite interesting happened:
On Friday night I emailed Dr. Chang, who does the gamma knife radiation at Stanford re the age of my son relative to radiation.  He wrote me back today, Sunday, and said that radiation was a very viable option for a 23-yr-old, and that he has treated others David's age and younger.  I was very impressed that he took the time out of his weekend to respond to me.
Katherine

[sgerrard]

That sounds like Dr. Chang. I got my first reply from him on a Saturday afternoon. I believe that in fact he often catches up on his email on the weekends. I was impressed by that, and others before me have told me the same thing.

By the way, at Stanford Dr. Chang does Cyberknife, not Gammaknife. As I have said elsewhere, Cyberknife is the same idea as GK, and just as good, only better.

Steve

[leapyrtwins]

Dr. Chang sounds like a winner to me.

Personally, I like doctors who take the time to email and/or call - and on the weekend is particularly impressive.

IMO, he definitely gets points for this 

Jan

[Kaybo]

I don't know about Dr. Chang, but were SSOOO impressed w/ this Dr. Byrne (the plastics guy).  He was so, super nice and even called me the night before to see if I had any questions & to reassure me that they would take good care of me Friday.  Then he called again on Satuday & apologized to Dave b/c he got tied up & didn't get to see us before we were released.  It is that little extra touch that means so much!
K

[Larry]

km5,

This is a tough call for you. Throwing a different spin on the previous threads - i had missle fossa over 5 years ago and prior to surgery i could still hear on the phone - albeit at a slightly reduced level. Following surgery, i am virtually deaf in my AN ear even though i was assured of retaining some hearing. I have also had chronic headaches since. You may want to do a search on headaches in this forum.

the side effects following surgery will be different for everyone. Some come out without a scratch and others have complications. Oh, my AN grew back as well. i am currently in watch and wait mode. personally, having middle fossa surgery was the biggest mistake i have made. It has changed my life significantly. Can you imaging chronic headaches every day? taking vasts amounts of drugs, seeing multiple neurosurgeons and pain clinics, all to no avail. sorry if the above is bitter but you need to be aware that there is a "dark side" to all of this as well.

My advice is - providing there is no noticable degradation of hearing then watch and wait. As soon as the hearing or other symptoms start to appear, then go into action. that action for mine would be radiation treatment. Once the hearing loss starts it is unrecoverable. All you can do is stop it from getting worse.

Please note, there are many good news stories from MF approach but there are also many not so good stories.


Laz
 

[HCSTARWIND]

Hello KM5
 I have been watching and waiting for almost 2 years. I've had several MRI's with contrast. I am older than your son 58. I wonder why a Dr. would suggest surgery at this point  for your son. His tumor is very small also. Unless it is because of his age. If he is not symptomatic with his AN, I would certainly take time and research your options. Again most of these AN's grow very slow 1-2mm per year. Some however, can grow more rapidly so repeating another MRI at 6 mos. from the first one is not unreasonable. Best of luck to you. How proud you must be to see your son graduate from college! Take your time. Helen

[km5]

Report from visit with Dr. Brackman:

Dr. Brackman was patient with his explanations, but was very clear that he recommended the surgery over radiation because David is so young.  He claims 75% likelihood that hearing would remain at present levels, and 98% likelihood no facial nerve damage.  David's hearing loss in high frequencies in one ear prompted his original visit a month ago to the ENT so there is a possibility that tumor has recently grown.  
 
Dr. Brackman said no radiation because:
1) no evidence that it would control for a life expectancy of 60 years
2) surgery has better hearing outcomes
3) there are 20 documented cases of malignancies after patients had radiation.
 
With respect to #3 he gave us a 2007 study by the Society for Neuro-Oncology out of Toronto Canada.
The name of article is:  "Glioblastoma multiforme after stereotactic radiotherapy for acoustic neuroma:  case report and review of the literature"  The main author is "Balasubramaniam".  It has a cite:  DOI:10.1215/15228517-2002-027.  It seems to support his position as to malignancies in small portion of people who were treated by radiation for AN - with no other likely causes other than the radiation.

David's AN is 4mm, and Dr. Brackman said that there were no additional measurements since it is round like a pea.  It does not extend out to his auditory canal.

Dr. Brackman said that the recovery would take about 3 weeks.

Seems like we have really descended into a quagmire of conflicting opinions from very reputable people on all sides of the issue.  It's enough to get a headache without even having the treatments.

Thank you all so much for your thoughts.  
Katherine