Hearing loss from Nigeria (Africa)

[Lemi J]

Am a Nigerian with SSD (left) with progressive hearing loss on the right coupled with Tinnitus. Currently a HA user on my right ear to amply sound so I can hear from my left (SSD) side. For 15 years left side has been bad diagnosed with severe sensorineural hearing loss unable to use mobile phones or ear phones on my left ear, if I do all I hear are wobble noises unable to systematically understand the words or sounds but I hear wobbles however meaning its not dead. Been living with this challenge for 15years. I have made my choice to go with the Med El Synchrony implant and Rondo audio processor.

One thing peers on this forum should know is being in Africa with a hearing loss is much more difficult than foreign/developed countries, using a HA be it BTE or IIC (Invisible In the Canal) the stares, questions and weird eye contact from people, coupled with high level of ignorance by Africans as regards modernized technology and devices in general makes we hearing aid users look and feel awkward. For me hearing is priority as I need to hear due to my position and nature of Job but these ignorant people in my country makes it even seem abnormal coupled with a bit of discrimination and filthy pride (thinking they are better than us with hearing issues). - simply disgusting but I don't care, I need to hear and be successful as I work hard to be at all times.

As regards CI, I have chosen to have a Med El CI on my left ear but these are the challenges we face down here in Africa.

1. No form of proper Insurance so individuals/family's bear all the cost and in full cash payments

2. Surgeons have to be flown from a foreign country to perform the surgery here in Nigeria as there seems to be no local surgeon with CI implant experience (additional cost to the individual/family), making it hard to even certify which surgeon been flown in has proper track record of CI surgery's (almost a risk if anything goes wrong)

3. Little knowledge on activation/rehabilitation centers for mapping and programming

4. Poor or zero access to incentives like free BTE or Rondos etc....after paying such huge amounts without insurance

Even if I can afford my CI with raw cash I cannot get my implant or surgery date because Med El says its not cost effective to have a surgeon fly down to Nigeria to perform a single surgery and has to be nothing less than 3 patients. So where 2 other patients don't surface for a similar surgery am on a waiting list like forever whether I have the money.

It's really hard being an African in general terms, because things just don't work out systematically and I cant seem to understand why the continent which I found myself is just filled with enormous issues.

How can Med El look critically at this African region, there are a good number of us that are well educated and foreign exposed but choose to remain in our fathers land, but with limited access to advanced products and services (such a shame).

I have spent cash on hearing consultants like Harley Street hearing at West End in London but I cant afford to sit in the UK or USA for 3 months post a CI surgery due to my tasking job and position, hence the need to be in Nigeria for this CI surgery.

Peers is the CI worth it? I hear quite well with my HA on my right ear but once taken off feels like a disaster.

Also I hear quite (I mean quite) ok without my HA on my right but has anyone experienced a depreciated hearing loss without HA anytime he/she has a few alcoholic drinks? when am without my HA and I have a few beers or spirits, my hearing diminishes but after a day or two it restores to its normal level...that's just a bit weird so it prevent me from even having drinks with friends asides a noisy social environ and when I wear my HA its just so much noise and unable to hear speech.

So I know I need a CI to manage all these challenges but then one hurdle after another yet seems Med El ain't helping out with incentives or even milestone payments....Geez what a life

Med El should look into these for the African region and provide incentives like free audio processors once you can at least pay for one processor and the implant, also accessibility to spares and all is another issue....still waiting for my surgery date as its definitely not in my perspective so am just hopefully.

Peers we need to shake Med El up for the African region, its crazie I tell ya.......

[Mary Beth]

Hello and welcome to HearPeers.

I am sorry to read if the extra challenges you face in Nigeria.  I wish the best for you.

For me, both of my CIs have been definitely worth it.  They changed my life.  However, I was unable to hear well enough without them.  I relied on speech reading as my remaining hearing kept decreasing.

Since you function well with your HA and sometimes even without it, it may be a more difficult decision for you.

It is definitely important to commit time and energy to the aural rehab required after activation.

It is a big decision.  Take some time to think it through.  If you decide to get a CI, we will be here to offer support and encouragement,

 

best of luck.

[Lemi J]

Hello Mary Beth, I know your one of the most active members in this community and thank you very much for your post.

I have decided to get a CI on my left side and Am going in with Med El, am 34years old and still have many years to hear so It's a decision I think ain't no going back. I like the posts, responses and replies in this community, very Kool. Some posts have really invigorated me in getting a CI and with the Med El brand. Once we have finalized with Med El's representative here in Nigeria and fixed a date for the surgery, this year or next, il keep the community informed, I really can't wait to b implanted and Am excited about it.

2days ago I had a dream I had an implant and to my surprise I could hear well with my left ear and i was telling everyone wow I can hear...that has also formed a high level of encouragement for me to go for it, it's a done deal, am a CI candidate and Am going for it.....that's what's up...Med El holla at me!!!!

I hope using a CI on one side and HA or natural Hearing on the other side will balance out and sound the same?

Thank you

[Mary Beth]

Hi Lemi,

 

I am excited for you!  I know several people who have a Med-El CI on one side and either normal hearing or a hearing aid on the other side.  They do great!  When you get activated and begin your aural rehab, remember to also train both sides together.  I hope your surgery date is soon.  Fingers crossed that they reach the required number of candidates and schedule it soon.

 

Best of luck.

[Ivana Marinac]

Hello Lemi,

I have also read your struggles for hearing in Nigeria - I am from Croatia, a small European country which also has a limited access to hearing implants but Med-EL is not really responsible for that, our insurances are...:(

You have to understand that well experienced CI surgeon needs to be paid - why do you say that you should be in foreign country up to 3 months after the implantation? In general, I am pretty convinced that you could return after 7 days to your country.

Bigger problem is, actually, postimplant aural rehabilitation and tuning of the processor which, I believe, not well accessible in Nigeria (beside a well-experienced surgeon).

 

[Lemi J]

Hello Ivana, thank you for the post. Well me being in a foreign country as you have also mentioned is due to the post implanting details such as activation, aural rehabilitation, programming, fine tuning etc....not well accessible here in Nigeria, also as regards spares, neck loops, magnets etcs, all have to ordered.

But I have hope and and am coping with my HA for the interim, its just that a after few beers or loud music at a wedding or social event, I loose all sense of natural hearing avoiding most forms of socials, and with a HA no, I seem not to hear properly unless I use the head shadow effect or do some tilting....but on my left which is profound, no solution.

The only question I have as regards CI is, does it really work? I mean if It does and I can have my left ear pick up sounds, honestly wearing a HA on my right would not be necessary. The reason for the HA on my right is to amplify sounds coming from my left with is severe i sitll have residual hearing in the left ear but not good enough to understand speech.

I read about after 1st activation it sounds weird but then after constant use and practice it sounds normal and almost like natural hearing.....that's so good to know!!!!!

I hope a rondo 2 is out before my surgery cuz things like Bluetooth telephone connection, music AM/FM radio connecting directly with the processor seems appropriate without any neck loops.

Also could you advise??????

1. Is Telementry a standard procedure by the Surgeon?

2. Is Electrocochleography also compulsory?

3. Is the facial nerve monitor also compulsory? I need my facial nerve intact ain't no Sylvester Stallone or Bobby Brown all up in this.....lolzzz

4. Does the Rondo audio processor truly require triangle magnets for the synchrony implant? (Here in Nigeria is busy so alot of movements are required I dont need my future Rondo falling off.

I simply cant wait to get implanted on my left with the Rondo audio processor, seems its looking like Next year 2017...oh Gosh!!!!!!

I like this forum....advise peers.....can't wait to hear advises and real experiences.

 

[Mary Beth]

The magnets are circular but coded with triangle symbols for strength.

[Lemi J]

Thank you Mary Beth, will look out for that.

 

 

[Lemi J]

Hello Peers, My Audi called in yesterday to inform me to progress report, seems himself and Med El have agree to move forward. He is asking for my details in order to schedule a surgery date and have my bit of the cost so my Implant can be ordered and delivered to Nigeria. He says this will take about 4-6weeks, placing order, creating my implant, shipping, clearing and all. Having a family meeting this weekend on the way forward and payment schedule. Thanking God all the way, seems its about time I get implanted in my left ear, its been 15years of severe sensorineural hearing loss, its time to get it awaken again call it the resurrection, am good to go. Can't wait

[Mary Beth]

Best of luck.  This is exciting!

[Kara of Canada]

Best of luck Lemi!! God is great!! 

[Lemi J]

Thanks peers, will keep ya'll well informed as things unfold. Bless ya'll

[Ivana Marinac]

Hi Lemi,

Excuse me, I was absent for awhile from the forum.

I will try to answer your questions.

1) telemetry is absolutely important, it shows that electrodes work as well as the implant;

2) electrocochleography is not necessary - at least, there are various balance tests even more informative;

3) surgeons are divided here - some of them use the facial nerve monitor, some of them don't. Mostly, it is used for an uninterrupted surgical follow-up because there are certain episodes where your facial nerve can be affected for a short period of time but not in a way that it is permanently damaged: this surgeon than doesn't know the work which has to be done;