Loss of balance after cholesteatoma removal

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I am due to have major surgery to remove a large cholesteatoma, hopefully, soon.  I have been told that my hearing & balance mechanism in the ear will need to be removed.  Wondering how I will be after due to the balance issues.  Also how long & how easy will it be to retrain my brain through physio to be able to balance successfully.  Anyone else had this that could answer this question?  How were you after?

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5 Replies

  • Posted

    Hi Shelley. My son is the one with cholesterol. He had to have all the hearing bones removed but not the balance apparatus. His balance stuff is less protected now though so he has to wear a.hat if it is cold or he gets dizzy due it being overactive. Anyway, I have a balance disorder related to menieres disease and vestibular migraines. I have not had my balance apparatus removed but had it killed by gentomycin injections through the ear drum to reduce the vertigo. With my problem it used to b more common to just have the entire inner ear removed like you are having. But now they have generation injections which can kill the balance without damaging the hearing as much. They still do the inner ear removal when necessary. So what I am telling you is that the surgery you are getting has been done for a long time to treat menieres disease and also of course for when it is needed for a large cholesterol or other type tumor. They have lots of experience with this. Anyway having my balance stuff killed made me much more dizzy at first but after a few weeks I was much less dizzy than before. It is better to have no balance apparatus then one that does not work right and mine was giving me near constant vertigo. Eventually your balance apparatus on the other side will compensate. This will keep improving over several years. Make sure you get a referral to vestibular physical therapy. It is a specific type of physical therapy that helps you recover balance. Obviously you will have to recover a bit from the cholesterol surgery. But this vestibular rehab will make the balance functions recover much faster and better. You can read about it on the net. I think many of the exercises prescribed are even shown. Good luck!
  • Posted

    I want to add. This is very important. If any of the vestibular rehab exercises make you th err ow up do them anyway. They should warn you that you may throw up when you do the exercises and to do them anyway. Some people ignore this and this just makes things harder. You have to work the balance nerve that is left on the other side and get it compensating. Some people just lay in bed or use a cane indefintely. Don't do that. Push through the exercises. I used to schedule my therapy in the morning and did not eat after 6 the night before which helped. Also ginger is great for nausea and if u really have trouble with vomiting insist on a prescription for Morgan. That will knock most of it out
    • Posted

      I meant prescription for zofran. I don't know how to edit here!
  • Posted

    Thanks Jennifer. That's really helpful. Have been quite worried about it. Have MRI booked for this Friday but still no date for operation. Have a holiday in Ireland booked for September travelling across by ferry. Wondering if my balance issues will be sorted by then if my ops soon. Any thoughts? ?
  • Posted

    My son and I were both treated at John Hopkins Hospital and his surgeon also does his periodic ear cleaning at an office there. So I can only tell you about our experiences. My son's last cholesteoma surgery was one year ago. My balance nerve obliteration was ten years ago. There are several issues to consider. The surgical site itself will have to heal. This area can be slow healing due to the anatomy of the ear. I am not sure which procedure you are having. Typically, a canal wall up is the first thing they try, then they will do a canal wall down if it recurs. There is something new called a canal wall down with reconstruction as well. I am not familiar with the latter. If your cholesteoma is very large they may do the canal wall down as a first surgery. IF that happens they will have you return fairly frequently initially to help the ear bowl heal. This surgery enlarges the ear canal and afterwards the ear no longer self cleans so you need to return periodically for cleanings. It also takes more time to completely heal. That is, most of it heals right away but you may have lingering spots of unhealed tissue that you have to return to get in office treatment for. IT just is basically cleaning it and spraying stuff on it to help it heal. If it is a canal wall up procedure, the healing will likely not involve as many return visits or take as long. The other issue of the balance apparatus being removed- you may be pretty off balance initially. It takes a while for your brain to adjust to this. Personally I would not schedule any vacations especially a boat ride until after this ordeal was over. My experience was that first I got more comfortable sitting up. then walking, eventually was able to drive. I was not able to ride on a boat for years without getting very nauseus but everyone is different. I wish you the best of luck.

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