ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: km5 on October 06, 2008, 07:29:33 pm
-
Hello everyone,
You have all been an enormous help to us for the last seven months. I think this is the best all-round medical community board that I have ever seen. Now I have an interesting semi-ending, and a cautionary tale.
Our son was diagnosed 7 months ago with a 4 mm neuroma. He complained of "subjective" (very important) decrease in hearing in right ear as well as occasional dizziness. His very thorough ENT sent him for a MRI which discovered the neuroma.
We searched for answers and I believed we talked to extremely competent medical professionals. The surgeon was ready to cut his head open. The radiologist was ready to radiate. It was only a chance meeting through a friend of a European specialist in AN who suggested we watch and wait...and then asked what turned out to be an incredibly insightful question: How long has your son had problems with his hearing?
Bingo. That jogged our memories and took us down a completely different path..."He's had problems with his hearing his entire life. He always wants the TV louder than the rest of us." We got to wondering...Was his hearing really deteriorating, or was he, at 23, just slowing down after wild and crazy college years, and finally really noticing his hearing problem? And was his dizziness real...or, as we concluded, after watching closely and asking lots of questions over 6 months, how "normal" people occasionally get dizzy when standing up suddenly etc.?
It took us weeks to find his audiology tests from when he was 6 and 10 years old (the audiologist had them in archives, but originally told us they were destroyed...until we pressed upon him the urgency of the search). Unbelieveably, his hearing was the same in his right ear when he was six as it is today. And that gave us lots of hope.
By the time he took his second MRI last week we were all pretty convinced he had his AN for his entire life. And, sure enough, his AN today was identical to his measurement 6 months ago. The ENT now says to do another one in 6 months, then repeat once a year.
I understand that an AN may suddenly grow and that he must be forever watchful. But we are pretty thrilled right now. I know that each doctor meant well...but once the diagnosis of AN was made, it took on a momentum of its own, without a questioning of the original premise of deteriorating hearing etc.
Were it not for this site I would not have known to research all options. Endlessly. We talked with countless people, and one of our friends totally coincidentally met the European expert who asked the fateful question, the day after we had our conversation with our friend. So...you never will know who will make a game-changing comment, or ask a game-changing question...thank you all for your support. I encourage everyone to keep asking questions. Do not accept an answer until you are absolutely convinced that you know the subject, the studies, etc. almost as well as the doctors. After all, we are all people, the doctors are all people giving you their best advice, and all of us, the consumers, need to be extremely well-informed before opting for any particular treatment.
Best of luck to all of you in your searching, and thank you again for being there for us. I will write back after the next 6 month check.
Katherine
-
I am yippeeing for you and your son, good research!
-
Good job!
Watch and wait on a 4mm AN makes a lot of sense, and now that you have seen a six month MRI, the whole story makes sense. I hope the little thing stays little forever! Thanks for a very good reminder that research and questions can make all the difference in dealing with an AN diagnosis.
Best wishes to you and your son.
Steve
-
Katherine:
Thanks for a very interesting account of the somewhat tortourous path to discovering your son's AN.
Thanks, too, for the kind words regarding this website and these forums. It's very gratifying and encouraging to learn that someone has been almost directly helped by what we do here. I appreciate your taking the time to relate your experience and I trust that your son's future MRI scans will show his AN remaining stable for a long time to come. :)
Jim
-
Katherine,
i am so delighted for the outcome!
It is a real torture for the boy himself and the relatives one such brain surgery! (I can tell you, since i am having my 3rd AN surgery next week! ;))
Keep doing annual check-up MRIs! i hope they will show no change!!
Best to you and your family!
Hrissy
-
I'm a big fan of watch and wait. My AN's (I call 'em my twins) haven't changed much in the last couple years when they were finally big enough at about 2mm each for the medical folks to finally call them AN's. They had been showing up for a few years before that but were too small for them to decide what they actually were. I'm in no hurry to do anything. As long as they don't bother me too much I'm happy to live and let live.
Mark
-
Great story, and great outcome for your son. I hope it all holds steady for years to come.
Sue in Vancouver, USA