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arlys (@arlys)

Sudden Hearing Loss

Hearing Loss | Last Active: Jan 28, 2019 | Replies (24)

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Well, where to start.
I presume this virus has caused you a lot of infections problems during the time you were losing your hearing.
At any time did any doctor do any scans such as PET/CT Scan, special CT or MRI to determine any other damage, and or infections that you may still be having and don’t even know it?
Do you have any pain in the ear, or at the lower base of your skull on the left side, which had the virus?

Why do I ask these question is because I have gone through a similar experience on my left ear since 2014.
I had an infection and the ENT doctor decide to insert a tube for draining purpose.
In March of 2016 the doctor tried to take the tube out, but had a lot of problems removing it.
But before I proceed, I need to tell you my full story in as short of form as I can.

I am on my 3rd journey with cancer.
In 1973 I had parotid saliva gland cancer on the right side, and had to go through radiation therapy.
This was my 1st journey.
Back then radiation therapy was so different from today, and much more destructive and no control, which did a lot of damage to my on the right side.
The end result in 1991, after approximately 15 surgeries, was to totally remove the entire hearing and balancing system due to the chronic infections caused by the radiation.
As someone already mentioned to you in a post, single-sided implants was not an option even in the early 1990’s.
So the doctor wanted to make sure no more infections would come back.
So I have only had hearing on the left side since 1991 and have used a number of different B/C hearing aid systems since that time.
2nd journey with cancer was with basil cell on my nose. After 2 surgeries the margins were cleared and I did not require any therapy.
My 3rd journey with cancer was in 2012 and was the left parotid saliva gland and the tumor had grown into the facial nerve and the margins were not cleared. The decision made by the tumor board was not to do further surgery, so this made the job more difficult for the radiation oncologist in her treatment plan.
So now I have the radiation effects from 2012 that I’m dealing with daily,

I think that’s as short as I can make it and to give you an idea of what I am dealing with for a long time
My hearing in the right ear started to go down hill after the radiation in 1973 and eventually was deaf by the time of the surgery in 1991
So I was dealing with single-sided deafness most of those years.
Again, back then I didn’t meet the requirements for cochlear implant as the left I was still able to hear.
So I had to suffer with the handicap for a long time.

Anyway, moving forward with the problems I was having with the left ear.
From July 2014 my hearing in the left ear was also being effected by the infections and really was going down fast.
After having the tube remove, which took 3 months to heal from that and during that time period, I could not hear anything beyond 2 or 3 feet away with any clarity.
I finally decided to go through with the test to see if I qualified for the cochlear implant in December.
I no doubt did qualify for it.
So I met with the surgeon and we decided that it was best to go forward with the implant surgery.
But he decided that it was best to do the surgery in 2 stages.
The first stage surgery would be to do a mastoidectomy, clean out the area and to seal off the ear canal.
The reason for t his is to eliminate the chances of any further infections that would possibly damage the cochlear implant unit.
It took me a long time to decide if I wanted to go through with this, even though a surgery date was planned.
I am happy to say I did go through with the surgery #1 and am recovering from it now.
I can hardly wait to go through with surgery #2 in September.
Since December I have had contact with a lot of people who have had first hand knowledge of the success people have had with the implants ranging in all different age groups.

So that’s my experience with dealing with various hearing issues.

So my suggestion is that you make a list of questions before you meet with this mayo clinic team again.
Include some of the things I pointed out.
What are they going to do before the surgery,
More test such as the scans I mentioned above to make sure that you are not no a victim of chronic ear infection and if so should you also have to have the mastoid remove to prevent future infections which could cause damage to the implant unit.

I say this because even though my scans have been showing the mastoid problems, one ENT I have wasn’t concerned about it.
But the ENT surgeon doing the implant surgery was very concerned about.
He also said that it would eliminate a pot of pain in the ares I pointed out.
He was right and the chronic mastoid infection was part of t he problem.

Well I am not not sure if I have helped you with your questions or concerns.
Please let me know if you want further information.


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Replies to "Hello@arlis. Well, where to start. I presume this virus has caused you a lot of infections..."

I am so very sorry to hear of your journey & I wish you luck with the second surgery & much better health from now on!
Thank you for sharing & replying to my post.
Yes, my doctor at Mayo was aware of the sinus problems I have & immediately ordered a sinus scan. My right side is completely blocked & it is caused by a tooth whose roots are growing up into the sinus cavity. I am having that taken care of as soon as I can get an appointment with my dentist. My last appointment was last week at Mayo.
I now have time to think about the cochlear implant & make the final decision as I’m all set to go if I decide to do it. My only concern is that my balance may possibly be affected by the surgery as the virus caused labrynthitis (gone now with lots of therapy) as well as sudden deafness. That would mean lots of PT once again to improve my balance.
Thank you for your suggestions. I am thankful to have a wonderful cochlear team at Mayo & feel confident of them.
Blessings to you.

Hello Arlys.

I am glad you feel confidence with the Mayo Doctors team.

I understand the vertigo concerns.
Since 1991, when the entire right side hearing and balance system was removed, the left side has had to take over the balance of my entire body.
It took about 3 to 4 months for this reach its maximum capability.
Back then there was no special therapy to help.
But my ENT told me to get back to dancing a s soon as possible.
I did and it helped tremendously.
There are still certain things I have to watch for, such a s leaning or bending to far to the right.
But for the most part the left side has compensated for about 90% of my total balance.

Going into this first stage surgery of having the mastoid removed, it was necessary for me to have a special CT scan completed to see how the semicircles were in the left ear.
This was to insure that I would have minimum effect on the vertigo problems.
I would suggest that you have the same CT scan completed.
As far as I know this is a standard scan that has to be completed before giving approval for the cochlear implant.
If Mayo is not schedule you this CT Scan, You should be asking why not.
Have you received a big book explaining the entire process to determine if you qualify for cochlear implant?
These details are explain in this booklet.

It’s great that Mayo did a CT Scan of the sinuses, but I still would question about CT Scan of the mastoid for infection.

Anyway, I did not have to many problems with vertigo an it only lasted about a week after this first surgery, which took approximately 8 hours which included prep and recovery time. Things moved along very fast on the prep time and there was no waiting times.

The implant surgery will be in September.

Take care for now



Yes, I’ve had the CT scan& MRI as I woke up deaf in my left ear in Aug. of 2015. Had that done here but my Mayo doctors have read them & I have been approved for the surgery. They are VERY thorough. I also have the book etc. The doctor wanted the sinus scan done in addition to the CT scan if the brain, before the implant as I’ve had ongoing sinus issues that was never confronted except to prescribe more antibiotics.
Good luck in Sept.

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