ANA Discussion Forum
General Category => Inquiries => Topic started by: T-dad on November 29, 2015, 12:57:02 am
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My 15 year old son was diagnosed on Sept. 11th we have seen an ENT specialist and a Neurosurgeon that specializes in AN's. Neurosurgeon does both surgery and Gamma Knife, he thinks due to size and placement that GK is the way to go but all the research suggests he may be way too young for that. His AN is 1.2 cm x .8 cm and is bulbous in shape not the mushroom shaped. He is very active and athletic and is a freshman in high school. Just looking to see if there is anyone in the same age range dealing with this? He has no symptoms except a little bit of tinnitus which he never complained about until after diagnosis, his was an incidental finding after having an MRI of migraine symptoms
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From all I have read, interviews and presentations I have seen. Webinars attended. I think it will be worth contacting Dr Rick Friedman
http://www.keckmedicine.org/rick-a-friedman-md-phd/
Gamma knife is an option too. One study has placed the risk of malignant transformation at 14 per 100,000 people at 20 years if my memory serves me correctly. Risk at 80 years will probably end up being between 50-100 per 100,000. A small risk but not insignificant.
I have a 15 year old daughter and wondered what I would do?
I had Cyberknife which is similar to Gamma Knife, and I am very happy with my decision.
If it were my daughter I would be seriously exploring the very best surgeon out there, as I believe this would give the best chance of living a completely normal life.
I am a huge fan of radiation, Gamma Knife I believe would be a better choice than Cyberknife due to better radiation shielding, reducing cancer risk to the rest of the body.
Radiation on small tumours has great hearing preservation rates short term. But the hearing preservation rates at 10-20 years are not fantastic.
It's a tough decision, but due to your sons young age, it's extremely unlikely that Watching and Waiting is an option.
Another thing to consider is that people that get AN's younger tend to have tumours that are more aggressive. Faster growing tumours tend to be more resilient to treatment too.
Keeping radiation in the kit bag after surgery could be another consideration.
Good luck with everything...
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Hi T-dad,
I was 27 when I was diagnosed and had my surgery (among the youngest I have seen on this forum). I saw 3 surgical teams experienced with ANs (University of Maryland, Johns Hopkins, and House) and radiation was never suggested as an option due to my young age. I am surprised it was suggested for your son.
I would highly suggest sending his MRIs to both House Clinic (Dr. Schwartz) and USC (Dr. Friedman) for a free phone consult:
https://www.houseclinic.com/consultation/acousticneuroma
http://acousticneuroma.keckmedicine.org
They were together at House 2.5 years ago and successfully removed my 1.4cm tumor using the Middle Fossa approach. They preserved my hearing (90% pre-op), and I had zero facial or balance issues. I believe my young age helped me with a quick and easy recovery from surgery. I was back to driving at 4 weeks, and back to work full-time at 6 weeks.
Good luck!
~Michelle
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T-Dad -
I'm 37 and currently watch and wait. I spoke with Doctor's at House (Dr. Slattery), USC (Dr. Friedman),& Mass General (Dr, McKenna). No one has recommended GK or radiation. Specifically, Dr. Slattery said that not only will they be radiating the tumor but also the hearing nerve and possible facial nerve that the tumor is attached to. The Doc's have also suggested that I am far to young for radiation and I am far older than your 15 year old. I would get a copy of your MRI, and send it to the House clinic and also upload it to USC (Keck Medicine). Good luck and God bless.
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I have talked with a 16 yr old while I was in the waiting room of seeing my surgeon a couple years ago. He had done fine with his surgery and did have some post op balance issues which had much improved and the hearing loss on the one side. Looked great. So there are young ANers but just not too many. Cheryl R
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It obviously goes without saying that the doctors who perform microsurgery (traditional surgery) are going to "toot their own horn" so-to-speak, and vice-versa.
Dr. Chang at Stanford, who performs radiation treatment with Cyber Knife, has performed successful radiation treatment on several teenagers. You should contact him and get his opinion on treatment. Then factor his analysis with those of the microsurgeons.
Being a teenager doesn't mitigate in any way your son not being exposed to the same risk inherent in all AN treatment. The potential complications are lengthy.
I think you should get some more unbiased opinions and then make an informed decision.
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T-Dad,
I just wanted to welcome you and send ANers best thoughts and prayers your way. As a Mother and AN patient,,, I can not even imagine what you are going through. You have a major decision to make and will need much wisdom and research. Bless your heart,,,
I agree that you should send MRIs and info to both Drs that Michelle suggested for second opinions. I sent mine to House clinic and spoke with Dr Slattery. He was VERY informative and helpful and concerned. They are an excellent center for ANs. I have read only good things about Dr Friedman at Keck also. I also agree that watch and wait is probably not a good option for someone as young as your son. But of course, that is your decision to make.
Please let us know what you decide and how it goes. We are all concerned and sending our good thoughts for peace while you decide.
Jane
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I would want to know if NF2 is involved, and how having NF2 should/should not influence the decision making process.
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Just curious ANGuy but where did NF2 come into the picture?
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No NF2, it's just the one that was one of the first things the Dr. checked. Thanks everyone for your replies it helps a lot. He has a little bit of tinnitus but other than that he is fine. I have checked some of the links that have been posted on here and they have been very informative. I emailed Dr. Chang @ Stanford and plan on contacting House and Keck. I will post on here when we make a decision just please keep him in your prayers and thoughts.
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Just curious ANGuy but where did NF2 come into the picture?
His age. Getting and AN at such a young age could be a sign of NF2.
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Just to give an update, my son had surgery March 15th and is doing very well. We took him to St. Vincents in Little Rock and Dr. Ali Krisht performed the surgery, we are extremely pleased with the dr. and the staff. As for my son like i said he is doing very well they were able to preserve his hearing which he never lost hardly any to begin with and has had only minimal headaches and is taking tylenol which seems to be working, no facial issues at this point other than the staples in his head you wouldn't know anything was wrong. Just wanted to thank everyone on here that gave such good advise. we are still praying for a full recovery, we know he still has a ways to go but he seems to be on track.
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Congratulations and prayers for continued recovery!
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What an amazing outcome, especially preserving hearing! Congrats to you and your son!!
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Fantastic news.
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I am thrilled to read of your son's surgical recuperation and progress and will keep you both in my thoughts. We are awaiting the results of the MRI w contrast of the IAC that my 22 y o daughter is having tomorrow in Dallas. Like your son, lots of headaches, transient fullness and very transient hearing loss and imbalance....then facial numbness of lip/tongue/forehead 2 weeks ago. Lots of fatigue. But feeling great right now! MRI w/o contrast gave radiologist AN impression, but ENT awaits his own MRI series with contrast, which is appropriate.
To say we are nervous is an understatement, but hearing your son's story and receiving education and support from others on here: PRICELESS. Thank you.