Still Watching and Waiting!

[luvzmutt]

I had my first six month follow-up appointment at Hopkins on Monday since my diagnosis last summer and I am still "watch and wait" for another six months, barring no great changes in my symptoms

My hearing test and MRI results both came back stable.  The hearing was a bit off, but the audiologist said she could test me again an hour later and get the same results she got six months ago.  The MRI came back as measured 9mm x 4mm x 3mm.  Six months ago it was measured at 6.1mm x 7.8mm.  The surgeon (Dr. NiParko) said that there was pretty much no change, and the number difference is based on who does the measurements (it was a different radiology center and radiologist from last July).   He did comment that because of my diagnosis of NF, I may not have a typical AN, but I'm going to email him to get better clarification of what he meant.  He also agreed with the NF clinic at Hopkins about radiation not being a option for me because of the NF-1, but again, I want to get more clarification.

We also talked about "therapy" for my increased tinnitus.  He suggested buying a good pair of noise canceling headphones and
listening to classical music, on podcast lectures for about an hour each day.  I found a pair I liked at Best Buy (Bose Quiet Comfort 15) noise canceling headphones.  They are a bit expensive ($300.00) so my husband is trying to bid on a pair on ebay.  Dr. NiParko said to try this before I go to the hearing center at the University of Maryland to look at the Widex hearing aids (the ones that are suppose to help tinnitus)  He said the are very expensive, and usually not covered by insurance.  If anyone has any other thoughts on headphones, please let me know.

~Leslie

[CHD63]

Hi Leslie .....

Glad the report is stable.  That gives you more time to explore your options, should your symptoms begin to increase.

Re:  tinnitus ..... I have 20% hearing in my AN ear, but with 100% speech discrimination ..... therefore I have had excellent results with my Widex digital hearing aid.  Maybe others can update this, but in my experience no insurance company will pay for a hearing aid, only the BAHA because it is considered a prosthetic (implanted in your skull).

My audiologist programmed my Widex with one of the programs being a Zen setting (random soft bells at different pitches).  The idea behind it is for the brain to have something to listen to instead of the interior noise.  I tried it a few times but I just could not do anything else ...... not even nap, because I kept trying to figure out the random pattern.  In the standard setting the hearing aid certainly helps understanding conversation, except in a noisy environment.  It also masks the tinnitus greatly so I wear it from the time I get up in the morning till bedtime.

I also have a custom made musician's plug that I put in my good ear (and take out my hearing aid in the AN ear) when I am in an exceedingly loud environment, e.g. noisy restaurant, movie theatre, etc. and that works pretty well when I do not need to converse with anyone.

Best wishes.

Clarice

[luvzmutt]

Clarice,

Thanks for the response.  I think I would probably try to figure out the pattern too!  I think that when I go back in July for follow-up, if there is still no growth, I will look into the Widex.

~Leslie

[TJ]

Just more information.  In checking with many different insurance companies many say they will pay some of the cost of hearing aids.  They fall under durable medical, my own insurance paid up to $2000, which was almost half the cost.

Good luck

TJ

[sunfish]

My understanding is that, in many states, insurers are now required to pay at least $1000 toward a hearing aid, if they are going to offer insurance in that state.  That's how it is in South Carolina.  My BCBS plan paid $1000 toward my hearing aid (Dot²20 by Resound).  I'm lucky, in that the aid significantly decreases my tinnitus.  I've had an excellent experience with this aid.