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arlys (@arlys)

Sudden Hearing Loss

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

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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!

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Replies to "Hi @ntnee! Keep us updated with how your new Baha 5 is. That's exciting! @squaredancer, I'm..."

Hello @jamienolson

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.


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.

Hi Tim @squaredancer – you’re dealing with enough issues for several people! I’ll think of you when I’m tempted to complain.

11/7 isn’t very far away. It’s so amazing to think about all of the miraculous things doctors can do!

I’m often asking questions when I get a new prescription. I see so many doctors that I know they can’t possibly know what all of the others are prescribing me.


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