A query came in from a reader –
Auditory brainstem implants is finally going to become a reality for me, I’m on the urgent list for another MRI. The ABI surgeon is currently being registered under a neurosurgeon for the procedure later in the month. I don’t have NFII but have had meningitis and 3 failed CI’s within 6 months post implantation, I would be interested to know if there is anyone that is also in the NT (Non-Tumour) group who wouldn’t mind sharing their experience, the journey, then the ABI and a whole new and difficult beginning all over again. How successful is it for them etc and if they wanted to share about the surgery and activation, how many days re-admission to hospital did it require, did they require a further aesthetic pre-activation, such as the children have? CJ
Please post or link to ABI users if they can advise…. thank you.
CJ, you could check out the following;
facebook.com/tigersharkdude
facebook.com/rachael.morris.104
Facegroup group – ABI Technology
The Auditory Brainstem Implant: One Child’s Success Story
I look so I can hear.... 
I created the Auditory Brainstem Implant Technology group on Facebook as a place where ABI users, candidates, and implant professionals can gather to discuss all aspects of this technology.
In the United States, ABI’s are only approved by the FDA (package labeling) for age 12 & up, and only for NF2 (neurofibramatosis type II) patients: Surgeons can go “off label” for people like you for salvage when CI’s fail, but in most all cases insurance will .NOT. reimburse it, meaning you’ll be on the hook for about $100,000.
There are about 1200 people worldwide with ABI’s (as opposed to about 270,000 with CI’s), as NF2 is (thankfully!) a very rare condition. Also, ABI surgery is very complex, as the skull base must be opened, i.e. the dura mater is penetrated and peeled back to gain access, which can take as long as 8-10 hours.
About 1/4 of all ABI’s have been implanted by Dr Derald Brachmann at House Ear Clinic in Los Angeles, witht he remainder scattered around the world, with a group implanted by Dr Vittorio Colletti in Verona, Italy, including the one featured in Dr Todd Houstons’ “One child’s success story” article.
For much more more on ABI’s, please see this detailed Hearing Loss Magazine article by my friend Karen Litchefeld titled Hearing with Our Brain: Karen’s Journey Back to the World of Sound.
There are two things that have come up in the group discussions and the literature that are worth noting:
1) People who receive an ABI who do not have NF2 (such as yourself) seem to perform better than those with the dreaded condition;
2) One of the complaints is that, in general, affixing the ABI coil to the head is a problem as the implant magnet is almost always removed, as it interferes with MRI’s. However, for those who do .NOT. need frequent MRI’s, then the implant magnet can be installed.
Good luck!
Dan Schwartz,
Editor, The Hearing Blog
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Hi Dan,
I mentioned to Tina I have had my ABI now and am awaiting activation of the speech processor. Following recommendation for me the procedure was done in Germany. A little bit extra to wait as its Christmas and summer holiday (Southern Hemisphere) so still silent and waiting.. Is it worthwhile to join the Facebook group without NF2, I know there are just a very small group of people whom have had some experience with HA’s, CI and ABI. Regards CJ
Hi CJ
i would definitely join the FB group because you need support, even though you haven’t been switched on yet. People tend to start worrying when they decide to choose an implant! and that is when the support begins. Good luck and do let me know how you get on.
Tina
I have NF2 and highly recommend an ABI. Just got mine in Dec and it helps a lot. I don’t have a magnet under the skin, I use stick-on magnets, so an under-skin magnet is not needed. During the first year, you go for a “tune up” 4 times, then once a year thereafter. It is done on an outpatient basis.
I had mine done at House Ear Institute in LA. When I had mine activated in Jan, it was done over 2 days. It was totally incredible to hear again. I have 18 active electrodes. At first, speech sounded robotic and environmental sounds were like beeps. Things sound more normal now, but it is not totally like normal hearing. You don’t need any anesthetic to have it activated, though turning on some electrodes may produce some discomfort. Not to worry, as they can easily deactivate them right away if they are problematic. I only had one electrode that caused pain. The other 3 that aren’t activated now produced identical sound to other electrodes, so it would not have ben beneficial to have them on. I am due for a tune up in a few weeks and hope they can turn on more electrodes for me… and also give me a music setting.
Best of luck to you!
Megan
CJ, by all means join the ABI Technology group, as it is not just for people with NF2. In fact, we have several parents of infants & toddlers born without cochleas &/or auditory nerves in the group, implanted by Dr Vittorio Colletti at University of Verona in Italy!