I am so scared please help.

[Renachelw]

Hi everyone,

So with my rapidly declining hearing, I'm left with almost no hearing in my right ear. I am scheduled for a surgery on 14th August which is really soon.

The problem is, my usual doct is no longer with the hospital and im given another doct which is experienced (14 years), but I do not trust as much.

He told me that the following are complications from the surgery, but are very rare:

-Meningitis (I took 2 vacines for this already)

-Facial Paralysis (Is this reversible does anyone know?)

-Lost of sense of taste

-Infection

-Implant might not work

Well, I am most afraid facial paralysis, migraines, and losing my sense of taste. I'm not really worried about being cut up or losing my residual hearing. Im worried about the after effects and how my life will be after that.. I'm only 21 I don't want to screw up my life by 1 surgery.

Ok the main thing is, this doct says I dont need any more scans as my last scan was in 2015. 

Is this reliable? My family is really so emotional now over me getting surgery, that none of us can relax and make sound decisions. 

Do I go ahead with the surgery? Is there any safe steps I should follow before going for the surgery? Am i panicking too much?

Please help. 

[Daniel the Stranger]

Hi Renachelw,

I'm due to do the surgery next January and the doctor also told me about the possible complications that come with the surgery. If I'm not mistaken, it is less than 1% of the patients who suffer any of these complications after the surgery. I really would not worry too much about that.

[Kara of Canada]

Hi of course there is the risk involved. There is risk with daily life too. So if you really feel that it's too risky delay your surgery. Find another doctor. It is a big step to get a surgery for a CI. You need to be 100% that this is what you want. You need to be confident that the surgeon is meeting your needs. 

 

I have in CI and my life has never been so good! I can again take on the phone. Listen to music, and have good conversations with my family members. Also remember this is not a quick fix nor a cure. It is only and aide. To help you along. Once the processor is removed you are deaf. (Like removing a hearng aid.) 

 

Always go with your gut. Take care, Kara  there is a find your clinic finder in the Med El website. Best of luck!  

[MED-EL Moderator]

On 8/7/2017 at 7:17 AM, Renachelw said:

Hi everyone,

So with my rapidly declining hearing, I'm left with almost no hearing in my right ear. I am scheduled for a surgery on 14th August which is really soon.

The problem is, my usual doct is no longer with the hospital and im given another doct which is experienced (14 years), but I do not trust as much.

He told me that the following are complications from the surgery, but are very rare:

-Meningitis (I took 2 vacines for this already)

-Facial Paralysis (Is this reversible does anyone know?)

-Lost of sense of taste

-Infection

-Implant might not work

Well, I am most afraid facial paralysis, migraines, and losing my sense of taste. I'm not really worried about being cut up or losing my residual hearing. Im worried about the after effects and how my life will be after that.. I'm only 21 I don't want to screw up my life by 1 surgery.

Ok the main thing is, this doct says I dont need any more scans as my last scan was in 2015. 

Is this reliable? My family is really so emotional now over me getting surgery, that none of us can relax and make sound decisions. 

Do I go ahead with the surgery? Is there any safe steps I should follow before going for the surgery? Am i panicking too much?

Please help. 

Hi @Renachelw, 

Firstly, thank you for reaching out to the HearPeers community. The time leading up to surgery can be nerve-racking and full of anticipation for many, so you're not alone! We have a number of people on HearPeers who are cochlear implant recipients such as @Mary Beth who has bilateral implants, and @Megan L. who got her CI at the end of last year. They may be able to share their experiences with you and offer some further support and advice. Additionally, here is a blog post on some tips for leading up to cochlear implant surgery that also might offer you some good information: https://blog.medel.com/what-to-do-before-getting-your-cochlear-implant/ I also recommend to stay in close contact with your CI team including your MED-EL Representative throughout this journey as they will be able to offer you detailed information and medical advice specific to your case. If you need the contact details of your local MED-EL Representative, let me know and I'll send them through.

Wishing you all the best for your journey and don't hesitate to reach out to the HearPeers community with any questions - they're a great group of people  

Kind regards,

Leigh

HearPeers Support Team

[Mary Beth]

@Renachelw

 

hi,

 

I was quite nervous too.  I think most of us are.  But eight months later when I woke up on the morning of my second CI surgery, I was singing Happy Birthday to my left ear.  That is how life changing my first CI journey was.  Amazing.  It took lots of aural rehab to get great results for me, but it is amazing.

 

Feel free to ask any questions and we will do our best to answer.

 

Wishing you the best on your journey.

[Megan L.]

Hi @Renachelw ?

I hope you are starting to feel a little better with our replies!

As Leigh mentioned I had my surgery the end of last year (October 2016). Like you I was given the same risks - loss of taste, facial paralysis, possibly of not working, etc. I too, was most afraid of the facial paralysis. My doctor used sensors that would let him know if he was too close to a nerve. Double check with your doctor that they use sensors as well. While I did not experience any facial paralysis of any sort, I did experience a metallic taste for a few days after surgery. It wasn't too bad with food just liquids like water. So I drank 7-Up ? 

I was told the same thing - I didn't need another MRI scan of my head since I had one done in the last 5 years. But I had another MRI done because it made me feel better and you never know if something changed. 

As I always tell people, the implant is life changing and you need to feel 100% comfortable, so do what you need to do to feel comfortable. So maybe that is talking with the doctor again and asking more questions or maybe that is postponing the surgery until you feel ready. Do what you need to do. After all it is a journey ? 

Ask all the questions you need to.

I hope this helps! Best wishes!

[hadron]

Hi @Renachelw

Your previous CT scan probably found no issues with the temporal bone. There probably have been no issues since that date. However you can certainly request another CT scan if you would feel more assured by a more recent update..

Facial paralysis is very rare. The surgeon has to go between the facial nerve and the taste nerve to access the cochlea. Ask the surgeon to show you how this is performed and if there are any obstructions which could make this procedure difficult. This form of facial nerve irritation is called Bells Palsy.

A facial nerve monitor is usually used during surgery. It alerts the surgeon if they are working very close to the facial nerve.

As I stated previously the surgeon maneuvers near the taste nerve called the chorda tympani. The surgeon tries to keep the integrity of the taste nerve intact. Ask your surgeon what percentage of patients suffer taste loss and the duration of the loss. In almost all instances the loss is temporary 

 

[Lisabeth]

Hello Renachelw,

I totally understand being nervous.  I was nervous too.  I got my implant in 2014. It is on my left side.  I have a little bit of hearing in my right ear, but I do not use a hearing aid because it really doesn't help.  Most of my life I just used a hearing aid in my left. When the hearing in my left ear dropped to the point where my hearing aid did not help, I decided I would get the implant.  I was told all the complications that you were told and I too was told they are very rare. I did not have any of the complications that you mentioned. In fact, I did not really have any pain. I only took 1 of the pain medications (mostly because I thought I might get pain), but when I didn't, I didn't take any more. 

I also understand your concern about the doctor.  My ENT, who was planning on retiring, was going to introduce me to the surgeon who was also going to become my new ENT, but before that could happen my first ENT had a stroke and did not come back to work.  I knew about the surgeon and had heard very good things about him, but didn't know him like I did my first ENT. Fortunately everything went well for me, but if you do not feel comfortable, are there other surgeons you can meet with? 

I think all the things you are thinking about and worrying about are the same things other people, including me, experienced.  I can only tell you that my life has never been better. 

If you have any questions for me please feel free to ask. 

Lisabeth  

[Renachelw]

Hi everyone, thanks for your replies  

I have postponed the op to end Sept to better prepare myself mentally lol.

I am still worried but at least now I know that there are sensors to help the surgeon during the surgery haha.

I am gonna be one side implanted and one side with hearing aid, anyone else like this? What do y'all hear when both sides are switched on together? I have sooo many questions lol.

My aided ear (left) can only hear environmental sounds and not speech as all my life I used the other ear (right) which had no hearing loss until i turned 14.

Now my right ear is much worse than the originally deaf ear sigh. I cant use the phone anymore and its so frustrating! 

 

Also one qn that I would rly like to know, is it hard to find a life partner being deaf?

Thanks everyone. 

 

 

[Mary Beth]

I am glad you made a decision that feels better for you.  Our brains do fine integrating the CI and HA sounds.  With my CIs I can use the phone.  If you are in the US, check out InnoCaption.  People are reporting that it works great.  That may help you until you are comfortable on the phone with your CI.

 

Finding life partners does not have to be impacted by our deafness.  True life partners support us on all our journeys.

 

wishing you the best

[Mitchell]

Hi @Renachelw,

I know you decided to delay your surgery but I just wanted to give a little info about my experience. In October of 2014 I had a mastoidectomy in torder to remove a cholestatoma in my left ear. Afterward, I lost taste in the side of my tongue opposite the operation. Luckily though, like @hadron said, it was temporary and came back about a month later with no issues since.

Now I'm one day BoneBridge implant post-op and cant wait to get this massive bandage off my head!

 

Best of luck,

Mitchell

[Mary Beth]

Good luck Mitchell 

[Kara of Canada]

Best of luck there Mitchell!! 

[Ivana Marinac]

Hi @Mitchell - from, now a bit an ancient Bonbridge user: 4 years has passed and I had an anniversary yesterday - the day when the other part of my life has begun.

[Ivana Marinac]

Hi @Renachelw,

your questions are perfectly justified - patient should choose to go for a surgery when a maximum of confidence has been reached with a surgeon: both objectively or subjectively. After surgery we feel broke and sometimes even a small amount of pain made us to focus on it. I have seen lots of situation when people needed just a little support to endure their procedures. Although, I am not as @Adam regarding the number of surgical interventions - I have had lots of and ... to be frankly, it's like cleaning your house: when everything has its shelf - everything will go better. 

But, to be more specifical: list of side-effects of the op is an legal act - not just that a doctor protects against you than it works reversely. How? An informed patient can work with innerself. I am telling you as a patient but also from the surgeon's perspective.

Meningitis - an opening into a cochlea will be done, no matter what is done to prevent that, there's a chance for that. 

Facial nerve damage depends of patient's anatomy - sometimes it could be closer to a extremely tiny space to approach a cochlea: a direct hit today is unlikely, but a reversible impairment because of tissue damage (of temporal bone) also could happen - but it's highly unlikely. On top of that, today a facial nerve monitors are presented in each otosurgical OR and it's highly unlikely to damage it permanently. Same works for a "taste nerve", or as Hadron said - for chorda tympani. However, this nerve has greater anatomical variation and although more often it's reaction is as a consequence of surrounding tissue damage, sometimes it can be hit directly. 

For a closing, don't think about these minor percentages - if you're scared, you will never flip a new page in your life. Leave that side of worry to your surgeon - he is surely competent to do an implantation: CI ops are not spot where you start your career than only high-skilled surgeons can qualify to do this task.

Good luck!

[Adam]

@Renachelw congratulations on your upcoming surgery. I understand the feeling of being anxious before a surgery. It is important to be well informed and the surgeons do have to advise of any side effects, no matter how little the chance. Each person is a little different.

i have had 45 surgeries in my lifetime, 23 of which were brain surgeries. I had 3 just 3 months ago. I have been away for a little while, it is very nice to meet you. Each surgery, they still have to advise you some risks. It sounds like your surgeon is very experienced. I'm sure he will take every precaution to make sure things go as smoothly as possible. Try to focus on this being the start of an amazing journey that you are getting ready to take. Feel free to ask any questions you have about my hearing journey. Keep us updated.

your bionic buddy,

Adam

[Kara of Canada]

Happy bonebridge-avessary! @Ivana Marinac

[Ivana Marinac]

On 20/08/2017 at 8:02 PM, Kara of Canada said:

Happy bonebridge-avessary! @Ivana Marinac

Tnx! @Kara of Canada

[Kara of Canada]

@Ivana Marinachope you celebrated!!????!! 

[Ivana Marinac]

19 hours ago, Kara of Canada said:

@Ivana Marinachope you celebrated!!????!! 

Actually, I have forgotten... 

But then.... even just a short smile was a glimpse of joy of my soul...;)

[Kara of Canada]

☺️

[Renachelw]

Hello, thanks everyone for your kind replies

I am less than 15 days away from my surgery, and I really hope that life will be much better after switch on.

I used to be a really talkative person 7 years ago before I lost my hearing, but sadly nowadays I am too afraid to speak up. 

If all goes well, I might even challenge myself to a retail job (I always wanted to try but I'm afraid customers would get impatient talking to me.)

Is being implanted on one side good enough to hear conversations like a hearing person? What about TV and movies? Any single sided implant users here? 

I'm also looking forward to starting school next year (I stopped for 3 years, now i'm behind all my peers  )

Also, any tips on how different life would be, and what I can or cannot do?

I read somewhere that people get shocks on their implant while using a treadmill. Is this true?

I also really wanted to learn contact sports like Muay Thai or MMA all my life, but I read that I should not risk any head injury. Would like to ask if this is the end of my dreams? Lol.

Thanks again  

 

[Mary Beth]

15 days will pass quickly and I wish you the best on your surgery day.

 

Although I am now bilateral, I did function with only one CI for several months.  It was fabulous.  TV, movies, live Broadway shows, concerts, etc.  All fabulous.

But it required a lot of aural rehab.  Check out our aural rehab topic.

 

Treadmills are fine.  

[Kara of Canada]

Yes 15 days will fly by!! Change your perspective. It's only the beginning of your dreams!! Of course it will be hard work but you will be able to do things you haven't done in quite a while. We have a karate master here. He's bilateral. We have motorcyclists here. Some do extreme sports. Some don't. So talk to your surgeon and see what dos and donts he/she recommends. I am unilateral. I have only one implant. Sound is amazing for me! And it keeps getting better!! I can use the phone I can listen to music. I watch tv and movies all the time. So chin up and smile. Best of luck!!! 

[Cara Mia]

Hi Renachelw,

I was a single implant user for 8 months with very comfortable level of understanding people, TV, music, etc... even in noise situations quite soon after implantation (about 3 months mark).

I am sure that having only one implant can be good enough to talk with people without worrying about their patience. 

Any tips on how different life would be - my life is happier, more confident, and busier now!

I use a treadmill 4-5 days a week as well as the different gym equipment (plugged to an electric outlet). Have never got any shocks from it. So, I cannot say if such possibilities are true or not, but looks like it is possible not to have such issues.

And I believe all that we need to be adventitious in our dreams and grateful at accepting reality to be successful and happy in our life whatever it is.

 

Good luck and my best wishes for your activation!