Speaking for Kim Who Can't Speak for Herself

Discussion in 'Introduce Yourself' started by Karen for Kim, Oct 2, 2016.

tinnitus forum
    1. Karen for Kim

      Karen for Kim Member

      Tinnitus Since:
      Cause of Tinnitus:
      Came 2 months after Cochlear Implant
      Kim has been deaf since childhood, wearing 2 hearing aids with 20 percent hearing in one ear and 15 percent hearing in the other.

      On July 5 she had a Cochlear Implant put in her left ear, the nightmare started right after surgery. 1st she woke to nerve damage on her left side of her face, her eye would not shut and her mouth drooped down, she threw up for 5 hours straight. She was a mess, it has been 3 months and the nerve damage is still there. They sewed her eye shut for a week then they put a weight in her eye lid to help her shut it. She still has to put eye drops in every hour and ointment 2 times a day. She can only see out of the one eye. Her vision is not good now in the left eye. She cannot eat most foods now since she can't chew right on her left side. Having to blend her food now and eat very soft food.

      She was hanging in there and we are hoping the nerve heals, but it may have been cut we do not know we were not with the surgeon and he said he thinks he did not cut the nerve but the heat of the drill may have just damaged it and it will heal.

      It has not healed and it has been 3 months. We have had a lot to deal with. NOW for the topper on this horrible outcome! She started having severe ringing in her head since Sept 3rd. We have been back to them and they gave her Oxycodone for pain and is on Clonazepam to deal with the stress of this. None of which gets rid of the ringing. They said there is nothing else they can do but wait it out and hope it goes away. I am at my wits end.

      I am her sister Karen and I have been doing everything I can to help her. Even trying sound therapy. I wish we never had the implant done. She is not functioning well now and her quality of life is miserable. She can’t go anywhere, since it gets worse when out. After eating it gets worse. She is depressed and tired from lack of sleep. It seems no one has any answers to solving this
      • Hug Hug x 2
    2. Michael Leigh

      Michael Leigh Member Benefactor

      Brighton, UK
      Tinnitus Since:
      April /1996
      @Karen for Kim
      Hi Karen and Kim,
      Kim, I am so sorry to know that you are going through such a difficult time at the moment and hope that soon your situation will improve. Karen, I think it’s wonderful that you are there for your sister and know this must be a very difficult time for you both and the rest of the family.

      Wishing you all the best and hope things take a turn for the better soon.
    3. Cityjohn

      Cityjohn Member Team Research

      Tinnitus Since:
      5:10 PM 03/02/2016
      Cause of Tinnitus:
      Food poisoning.
      I'm deeply sorry for you both.

      The facial nerve (3) was likely damaged in the middle ear. Since it is seated in bone it can't move out of the way when you drill into it. Personally I can't quite see how the heat produced by a bone drill would damage the nerve temporarily, but I'm only a physicist.
      Perhaps it is wise to get a second opinion from a different surgeon (at a different hospital), and consult a personal damages lawyer at your earliest convenience. I realize you signed off on the operation but a case could be made for incompetence or mistakes during the operation.
      Since the nerve is situated in or next to the drilled hole it may be possible to investigate whether the nerve is intact.

      • Agree Agree x 1
      • Friendly Friendly x 1
    4. Starthrower

      Starthrower Member

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      Wow. Are you able to get a second and third opinion from other specialists in this area?
    5. glynis-harbron

      glynis-harbron Member Benefactor Hall of Fame Ambassador Team Awareness Team Research

      England, Stoke-on-Trent
      Tinnitus Since:
      Cause of Tinnitus:
      Meniere's Disease
      @Karen for Kim ,
      I'm so sorry to hear what has happend to Kim and everything Kim and yourself are going through.
      Sending lots of prayers your way and hope over time things will improve for Kim.
      We are here around the clock for both of you to support you and give you the strength to get through each day.
      I hope you both can come on here together and we can all be here for you when ever you need us .
      Wishing you both lots of love and strength....lots of love glynis
    6. Penate

      Penate Member

      Tinnitus Since:
      I'm sorry to hear that, I which some day people from the government and health departments see this horrendous condition happens to us, unfortunately they never came and read this forums, TINNITUS and HYPERACUSISS the only condition IN THE WORLD HAD NO TREATMENT....
      • Agree Agree x 1
    7. GregCA

      GregCA Member

      Tinnitus Since:
      Cause of Tinnitus:
      Hearing loss, otosclerosis
      Sorry for the whole situation. If anyone can understand how stressful it is to have ear issues (and whatever connected comorbidities) it's certainly this community.

      If the tinnitus came 2 months after the cochlear implant, what were the first 2 months like? When did they turn it on? Was the tinnitus correlated with any CI tuning/enabling?

      I do agree with other posters about getting second/third opinions.
    8. MikeP505

      MikeP505 Member Benefactor

      Ontario Canada
      Tinnitus Since:
      Cause of Tinnitus:
      Punishment for being so darn good looking!
      Dear Karen and Kim.

      How terribly sad I am to hear about this outcome from a CI surgery. I have some questions for you if you don;t mind sharing some answers. You see, I am currently on the list to have a Cochlear Implant done here in southern Ontario Canada. The hospital I am going to, Sunnybrook Health Sciences, has a 100% batting average of at least restoring some hearing and a 60% plus average at restoring a great deal of hearing using a Cochlear Implant. I also know of all the risks involved and the 4 main nerves in the area that they need to drill thru to install the electrode into the Cholera. I know they have to cut at least part of one of these nerves. What I was told at Sunnybrook is the team there has identified the nerve of choice that controls the taste along the sides of your tongue. They aim for this nerve to spare the facial nerve and eyelid nerve. There is also one other nerve that controls the taste along the main part of your tongue.

      So by accepting this surgery, I have to accept I will most likely at the very least lose the proper taste along the side of my tongue. Almost all patience post surgery say any food or water etc along the sides of the tongue now taste like metal! However, in some cases this nerve has actually healed and normal taste resumes. Not all cases tho and actually only about 20% get the full taste back so I'm told. They did say they never have once caused facial paralysis or eyelid paralysis in a single implanted patient, but I could be the first!! They have preformed over 1300 successful implants to date and still going strong.

      So my questions are these.........

      Where did your sister have her surgery?
      How old was she when she had it done?
      How was her overall health?
      You mentioned she had it done July 5th. Was it this year?

      If it was July 5th 2016, they may very well still be able to fine tune the sound processor so she can hear some things again. Some people take more time to adjust post surgery so I am told. Even up too and over a year before they really get it tuned right for a few.

      Sad to hear they damaged the facial nerve and it sounds like it was more than just one nerve if her eyelid is effected also. I look forward to hearing more about this if you please.

      Big hugs to both of you!!

    9. Lorac

      Lorac Member Benefactor

      Tinnitus Since:
      Cause of Tinnitus:
      Sudden profound hearing loss in left ear.
      I am so sorry that this is happening to you Kim. An operation that should have improved your quality of life has made it far worse instead. Maybe seeking help from a different clinic is a good idea.
    10. Fungus

      Fungus Member

      Wild, Wet and Wooly Wales
      Tinnitus Since:
      Cause of Tinnitus:
      Horrendous! I'm SO sorry.

      (Nice diagram Cityjohn....shows the anatomy well.)

      Like Mike,I'd like to know where ( which country) it was done.

      After 3 months, I would have thought that there would be some signs of nerve recovery if it had not been cut and not otherwise severely damaged during the procedure. There may yet be some recovery, though, and we are all rooting for your sister.

      No matter what you may have signed up to, was the likelihood of, and consequences of nerve damaged fully explained? (i.e was the consent truly 'informed consent'?).

      Here's sending your sister my very best wishes.

    11. MikeL1972

      MikeL1972 Member

      Tinnitus Since:
      Cause of Tinnitus:
      Sorry to hear of this agony you are going through.

      Definitely consult with other physicians and align your legal team for possible compensation. Of course you likely signed a hold-harmless agreement, but any intelligent doctor carries malpractice insurance anyway.

      As for living with tinnitus, you just do! The term is called "habituation". When you can live your life without being affected by the ringing, you have habituated. Best of luck!

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