Potential 4mm neurinoma detected in my 15 year old son (5 years remission ALL)

[Anhelp123]

My 15 year old was experiencing some morning nausea and sometimes throughout the day although otherwise pretty active and healthy.  An MRI showed a 4mm lesion in his left inner auditory canal.  He was treated for T Cell ALL from age 9-11.5 and received 1800 rads of cranial radiation back then.  The report says potential neurinoma or related to his history. We met with ENTs and Neurologists - all say, definitely benign based on size and location and just to monitor.  I'm wondering if I should get a 2nd opinion.  Thanks.

[MDemisay]

Dear anhelp123,

Firstly, may I say that you have stumbled on to an excellent website and forum for discussion. I wish that a website had been around for my parents back in 1974, further I wish that I had found this website in 2004 when I was out beginning my panic look for a person to tell me I don't need surgery! I  too stumbled on in 2012! I am relatively new here!!!

You are fortunate to have advice from those of us here (as patients who are each on our own journeys) and also have found a wonderful research tool in the ANA. Use it well, and come back often and discuss things like your frustrations and successes.

Secondly, it is unfortunate to meet this way, after an initial AN diagnosis, but we can encourage you to research and do your due diligence with the medical end because years from now, you will wonder could I have done something differently? Please explore your options, you owe it to your child!

 I was 17 when I had my parents bring me to Colombia Presbyterian my parents chose the best at the time. 30 years later, it is where I returned for my second brain surgery, it's still the best!

Perhaps there are other people that would like to give an opinion here, but being that I had 14 different Neurosurgeons whose opinion I asked, I wanted to avoid surgery at all costs because I had spent years recovering from my first brain surgery,alas, when there were no other options I had no other choice. If I were you, I would go with several different opinions, even if it was from the best doctor on the planet!


The answer to your question is: Personally, I would seek some kind of second and third opinion and if I were not satisfied I would seek more.



I know 14 DID doctors indeed turn out to be too many (and it took 6 months). Rule of thumb here is when considering brain surgery you want to get the best opinion more often than not the best is not the first!

Start your search with the US News and World Reports Top Doctors then make sure you are at a top recommended hospital.

Good luck and if you are the prayerful sort, I will be praying for you both. You and your son are on a journey the good thing is that you are together, remember to be there for each other!

Mike

[didyb]

Yes, get a 2nd opinion-- that way you won't have to question any treatment plans that are made down the line. The tumor is small and still in the auditory canal- that's a very good thing. Treatment options for small tumors can likely lead to very positive outcomes- with little side effects. This DX is nothing compared to what your family has already gone through. Prayers for you.