Mayo Clinic Connect
I am totally deaf in my left ear from a virus in 2015. Is there anybody else that experienced single sided deafness? I am considering a cochlear implant & have met with the cochlear team at Mayo.
Liked by lioness, Jamie Olson, peggyj4411, Teresa, Volunteer Mentor
Welcome to Connect, @arlys
I’d like to introduce you to a few Connect members who have experienced hearing loss and single-sided deafness. Please meet @peggyj4411 @Paula_MAC2007 @graveltruck and @cynaburst. Michael @michaelstewart talks about getting a cochlear implant at Mayo Clinic in this discussion that you may wish to join.
– Cochlear Implants http://mayocl.in/2owvKhs
Arlys, what questions would you like to ask? What have you found most challenging having lost hearing on one side?
Liked by Teresa, Volunteer Mentor, peggyj4411
Welcome to Mayo Connect @arlys! We hope that your discussions with others will be helpful to you! Teresa
Liked by peggyj4411
I am totally deaf in my right ear after an Acoustic Neuroma 15 years ago. I don’t think they did Cochlear implants on single sided deaf SSD people til recently. There is also a device called a BAHA or bone anchored hearing device which has been used for SSD people for awhile. I myself use a hearing aid called a Transear which is totally removable b/c I didn’t want to have any kind of a surgical implant. It is all a personal choice of course, but nothing will make you hear as you once did. It is very frustrating.
Hi Cynaburst, and welcome to Mayo Connect! I too, am totally deaf in my right ear, so totally deaf no hearing aid could possibly help. My right ear is also almost completely deaf. About 13 years ago I went to a famous hospital in New York City to see supposedly the best cochlear implant specialist on the East Coast. It was a miserably long trip and a miserable experience. This doctor decided to install (dumb word!) bilateral BAHAS instead of a cochlear implant. Making a very long story short, these BAHAS were not strong enough for me to hear anything, zilch, nothing. Not only that, this very–well–known doctor implanted them right in the back of my head, and boy, they still hurt and are very uncomfortable. I ended up giving the little boxes to a young girl whose insurance didn’t cover the cost of them. And I went back to regular hearing aides. I had ear problems since I was a baby; I was born with a cleft palate and some craniofacial deformities from a genetic defect carried by my mom. I have yet to have these useless gadgets taken out, as no other ear surgeon wanted to touch me when they found out who this doctor was. And this woman denied, of course, ever having these ineffective BAHAS done at “Her Hospital” when a second opinion doc called her personally! Cynaburst, don’t let my experience make you hesitate to get hearing implant surgery! But I would make sure your hearing loss would be compatible with a BAHA. I could write all night about hearing loss and ear problems–nose and sinus problems too! Good luck with your decision, and enjoy the coming week! Best Wishes, @Peggy
@Good luck to you, Arlys! I hope things work out great for you! Wish I lived closer to Mayo, even though there are some really good hospitals in my area. I just happened to have very bad luck with ear surgery! If I could do it all over again, I would have begged, borrowed or stolen the money to buy a plane ticket to Minnesota and have things done right. You will do just fine! Have a good week, and enjoy the spring days! Best Regards, @Peggy
Liked by Teresa, Volunteer Mentor
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.
Liked by Jamie Olson
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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.
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.
I have had single sided deafness since 2006. I had a cochlear implant in 2007 and got my first Baha the same year. I just ordered a Baha 5 super power and I’m anxious to try it. The technology has improved so since 2006 that I’m told I’ll be amazed by how much better I can hear with it.
Hi @ntnee! Keep us updated with how your new Baha 5 is. That’s exciting!
@squaredancer, I’m personally looking forward to getting a follow up from your stage 2 surgery! You have been extremely helpful to others here by sharing details. Thank you!
@arlys, do you have any recent updates with decision making for your Cochlear Implant journey? Do you have any more questions for other CI users that may be of help to you?
a few weeks ago I met someone that had just come from an initial Cochlear Implant hook up and she asked me to just say “hello” to her so she could hear my voice. It was such a great moment.
Enjoy the day!
Liked by Jim, Volunteer Mentor
Hope you are doing well.
I am just returning from a trip to Michigan where I approved to continue with the Stage 2 surgery for the Cochlear Implant.
It is schedule for 28 Sept.
Stage 1 surgery in March, which has left me totally deaf was a success and I have recovered well from it.
The removal of the mastoid, called mastoidectomy, has clear out the chronic infection in that area and has eliminated the severe pain I was having it that area.
That is exactly what my ENT from U of M Hospital said would happen.
I have been dealing with another ENT, whom I have had for a long time, who was denying that the pain was due to chronic mastoid infection for over 2 years even though the PET/CT Scans, CT Scans, and MRI’s indicated that there was a problem.
That is the end of seeing him.
So six weeks after the surgery my audiologist will be turning on the implant and I will be able to hear again.
She just notified me today that I will be getting the Nucleus 7 model, which is the latest upgrade model.
After using it for awhile she will order all the accessories for it.
I think I am starting to get excited about it.
But currently I am going through HyperBaric Oxygen treatments, also known as HBO therapy.
I am scheduled for 40 sessions, which each session last takes approximately 2 hours.
The purpose of the HBO therapy is to cure an infection up0 in the lower left jawbone, which is due to all the radiation I have had since 1973. If you recall, I am on my 3rd journey with cancer and all the side effects.
I could write a book on all the side effects that would let people know what the doctors don’t tell or don’t know themselves.
I’ve just completed #27 today and I am seeing some improvement in the pain relief and reduction of the infection in the lower left jawbone area.
Also back in June I had 12 sessions of special physical therapy on stretching my jaws to regain some opening that I had lost.
It was a success also, and when I left I was up to 17 mm. and you are reading the measurement correct.
I have very limited mouth opening due to radiation destruction and all surgeries I have had.
After that I able to get another EGD/Dialtation procedure completed in June, and I am scheduled for another one tomorrow.
These procedures are done to open the restricter in t he esophagus and to monitor the Barrett’s disease.
That’s the latest news for me.
I hope this is the information you were looking for.
Take care .
Your report is encouraging, Tim. I trust that your implant went well. How are you feeling about the final outcome? I had to wait a few weeks before they turned on my spinal cord stimulator, and it seemed like a long time. Then, it took 6 weeks before it started to get messages through to my feet. But what a relief! 80%+ pain reduction. I’m reminded how they hurt before when I walk or stand on hard surfaces for very long.
I’m looking forward to hearing all about your implant experience.
Liked by John, Volunteer Mentor
Hello @jimhd .
Sorry it has taken so long to get back to you.
I’m glad to hear that you are doing better.
The cochlear implant surgery on the left side was on 28 Sept as planned.
I am still recovering from the surgery.
I am having vertigo problems but it is improving.
This of course is to be expected with this surgery, but so people may not experience it at all.
In my case, it is complicated due to the fact that in 1991 the the entire hearing and balance system was removed.
At that time the left side had to take over the balance for my entire body.
It’s did for about 90% of the time. I have had to be very careful every since as to how far I lean to the right.
If I go to far I start to fall.
But right now I am having to use a walker to help me get around.
By the way, I am getting the nucleus 7 processor,
It has a lot of accessories that I am looking forward to get as time goes on.
The activation date for the implant is scheduled for 7 Nov. with a selected schedule of appointments that are set up at specific time intervals until for the next year.
I haven’t reached the final outcome. So I can’t answer that yet. But I am getting a little excited to hope I can hear again.
I did finish 38 of the 40 session of the HBO treatments which were helping to keep the infection down in the jaw bone. But it didn’t resolve the problem.
I saw my Oral surgeon a week ago on Monday and did some test and x-rays and determined that it was Osteomyelitis and that the lower left rear molar had to be extracted.
That was completed last Thursday and I’m still recovering from that today.
Now we have to wait and see if that helps that problem with the intense pain in the jaw bone.
Having the HBO therapy was an important step I needed before the oral surgeon could due the extraction so the timing of events worked out for the best.
Now maybe I can finally get some relief from all the intensive pain I have been in for over 3 years.
Now my Primary had done a bone scan a while back and the results shows that I have Osteoporosis, which I found this out on Oct. 5.
He wanted to put me on Alendronate, which has bisphosphonates in it.
This medication is known to cause Osteomyelitis.
I told the Oral Surgeon about that and he says not to take that medication at all ever.
He also said he didn’t want me on any other medications for Osteoporosis, at least for another 6 months.
So people need to be aware of these medication doctors want to put on for Osteoporosis if it has bisphosphonates in it.
This kind of updates you on where everything is right now.
Hope I have answered your questions..
I haven’t from any others on this thread. perhaps they quit following it.
Hope @arlys is doing well with your implant.
Take care for now.
@squaredancer! Great news!! I’m so glad to hear your implant is complete. Thank you for keeping us updated with your progress.
I look forward to hearing about your activation too. I’ve heard happy patient reviews on the Nucleus 7 model!
I wish you the best on November 7th…I work in the Audiology department and activation day is always so exciting.
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