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Pulsatile tinnitus and vertigo after surgery for cholesteatoma

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Mary_McAvoy
Mary_McAvoy

I've had problems with ear infections my entire life. I ruptured both eardrums as a teen. Five years ago I had surgery to fix a deviated septum to help stop ear infections and sinus infections. About 4 months ago, I had another ear infection in my left ear (which was actually considered to be my "good" ear) that left me with significant hearing loss and problems with dizziness and nausea. After several months of treatment with antiobiotics and steroids that didn't help, I was referred to an ENT who eventually discovered that I had a cyst behind my eardrum (cholesteatoma). He believed that we had caught it early and that no permanent damage had been done. We scheduled surgery to remove the cyst and to insert a permanent tube in the ear to equalize the pressure. After the surgery in July, I've continued to have lots of problems. I've regained some hearing (my ENT says we won't really know for 8-10 weeks if that will come back. My balance is better than it was, but I still struggle with periodic vertigo and just a general sense of being dizzy or drunk (and I often look drunk when I walk). My biggest setback is the increased tinnitus, especially the pulsatile tinnitus which is driving me crazy. I went back to work 5 days after the surgery, worked for a couple of weeks, and then went on a 3 week medical leave to relearn how to walk without hurting myself. I took valium for a while (which helped), but my doctor wants me off it and back to work. I'm at a loss for what to do next. This is wreaking havoc on my life. I return to work Monday to try it once again. I am a retail manager for a large bookstore and I tend to work 50-60 hours a week. I'm looking for advice, expectations, comfort? 

0 likes, 13 replies

13 Replies

  • rmazusa
    rmazusa Mary_McAvoy

    Posted

    Hang in there, Mary. How did u find out you had a cyst? MRI?
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    My ENT kept finding "debris" in the hole in my eardrum. He cleaned it out the first visit and then found he had to do it again 3 weeks later. He ordered a CT scan which revealed the cyst. Even though we caught it early, the cyst did compromise the bone somewhat. My ENT still felt that I would make a full recovery, but I continue to struggle with the tinnitus, dizziness, and fullness. I feel like everyone is getting tired of my issues (I used to be Wonder Woman in most aspects of my life), including my doctor. On top of the vestibular issues, I have problems with my knees and back and can no longer do my daily physical therapy that keeps that under control. I just don't know where to go from here.  
    • rmazusa
      rmazusa Mary_McAvoy

      Posted

      You had the surgery in July...  it's only been a few weeks.  Hang in there.  Even simple ear/nose/throat procedures can take months to heal.  I had a simple surgery to open up my sinuses 18 months ago, and it took six months to really show improvement.  Not that I had the symptoms you're discussing, and it was a simple surgery.  But still ... 

      Don't fret yet - and DO NOT hesitate to tell your docs how you're feeling.  Keep telling them.  Get a second and third opinion as well - I would start there.

    • rmazusa
      rmazusa Mary_McAvoy

      Posted

      By the way, this form another thread on the site regarding Vestib Lab (on the knee issue): "Just another side of this, my rheumatologist said you can also get problems with your knees from a vestibular disorder, due to the fact that when you are constantly dizzy, you change the way you walk.  Most of us already have wear and tear in small parts of the knee, and it you start walking differenlty, over the course of a week or so, you can inflame those bad parts.  The bones are basically rubbing a different way inside the joint.  Anyway, this seems to have happened to me.  I've had VN-like symtoms fro the entire summer, and near the end of the summer (after a lot of excercising) both my knees became inflamed.  Lots of popping, clicking, and a little bit of pain."
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    Thank you for your support. I returned to work today. It was certainly challenging. I manage a large bookstore with a cafe, and all the noise from customers, music, blenders, etc overwhelmed my senses almost immediately. I was dizzy and nauseous throughout the day. But I pushed through and wound up working almost12 hours. Not my ideal first day back, but that's retail. I will try to be patient and take it day by day. The info on the knee joints is very interesting. I tore the meniscus in my left knee a year ago when I fell down some steps. This whole balance thing has been a problem for a while.  
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    It's been a very long week. I had to go back to taking valium every day to deal with the dizziness that hit me every day when I tried to work. I saw my ENT today and he admitted that I am not responding to anything in the typical ways. I have him stumped. He removed the tube right there in the office (terrifying but not as painful as I feared) in hopes that it will help. He also said there was more nerve damage than  originally anticipated and so the tinnitus and hearing loss will most likely be permanent. I will be checking in with him over the next 4 days for signs of improvement in the dizziness. 
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    Things are improving slightly now that the tube has been removed. Not as much dizziness or pulsing. I am hoping for continued positive results. My ENT said it's rare for tubes to cause problems, but it's worth investigating if you have a tube/s and you're still having problems. 
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    It's been over 2 months now since my surgery and I am considered to be "recovered." I am working without the Valium and it has been rough. Some days aren't so awful. Others are really bad. My balance testing came back "within normal range" and my ENT said he doesn't think it's the inner ear causing the imbalance. Funny that it all started with my inner ear. I still have constant tinnitus, a feeling of fullness in the ear, and a loss of hearing. Am looking for a new doctor for a second opinion. 5 months into this has wreaked havoc on my life. For those of you who have lived with it for years, I don't know how you've done it. I have the utmost respect and sympathy for you. My work has expressed that they have "grave concerns" about my ability to do my job with holiday coming. My doc says I am fine. Caught between a rock and a hard place. My husband even made a comment yesterday about it possibly being some in my head, that my fear of being at work is making me more dizzy. Ticked me off but maybe he's right. Anxiety certainly comes as an after effect of All this.
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    Update: I changed audiologists and had another VNG done. The results confirmed what my ENT said but rather than continuing to let me just deal on my own, the new office is starting me on physical therapy to speed up the healing process. I am also being fitted for hearing aids which they say can help with the tinnitus and hopefully the inability to deal with over stimulation from noise and commotion. It isn't a miracle and every day is a struggle but I do feel heard and hope to be moving the needle. 
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    I started physical therapy and it is already very validating. The exercises make me nauseous and dizzy but I think I am getting a little bit better every day. At least there's hope. They are putting me on a balance platform this week for a new round of testing. The words from my therapist "Well of course you're experiencing dizziness. I can see it in your eyes..." I cried. After my ENT dismissed me when my VNG test results came back "normal"...this has felt wonderful. My therapist hugged me twice and told me she would help me.  
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    Every day is still a challenge but I have had improvement. Physical therapy has definitely helped. My physical therapist is fantastic and she is my gatekeeper with all my other docs since she has the best handle on how I am feeling at any given time. She also worked with each of them in the past so they trust her and take her recommendations. I am so glad I ditched my first ENT and found this team of people who are working together for MY benefit...what a concept, right?!! I now wear hearing aids which has helped tremendously. I haven't heard so much since I was a kid. The osteoarthritis in my knees is still an issue and I have had to resort to a cane some days but I simply take each day, each hour, each minute and just get through what I have to. I am in the middle of a brutal holiday season at work and that's my biggest challenge, just staying on my feet. I continue to wonder how long I can keep this up but can't afford to not work. 
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    Just giving an update. I made it through the holidays. Not an easy accomplishment. A severe sinus infection and bronchitis set me back a bit but once again I am on the mend. My knee is shot. Lubricant injections didn't work, probably because I couldn't stick to the 5 hour maximum time on my feet. Probably looking at knee replacement I guess. I was terrible at keeping up with my physical therapy during the peak of the season. I have to forgive myself though because beating myself up and feeling guilty only made things worse. Any extra time I had went to sleeping. Back on track to keep up with my exercises and that helps tremendously. It's amazing to me how hard I have to work to try to stay on top of this whole thing. So easy to have setbacks and feel like I am back where I started except that I know that I am not nearly that bad. 
  • Mary_McAvoy
    Mary_McAvoy

    Posted

    It'S been a year since I had my cyst removed. With my physical therapy, my hearing aids, and a lot of sheer cussedness, I had regained my balance for the most part. Now it looks like my cyst has returned and the roller coaster ride begins again. I haven't had the diagnosis confirmed yet. Waiting to see a new ENT. I refuse to go back to the old one. But my audiologist and I are pretty sure from the symptoms that the cholesteotoma is back. Luckily I stepped down from running my store earlier this year (to avoid knee replacement surgery). At least I have more time to take care of myself and deal with what I have to. It's scary to have to be dealing with all this again. I do so feel for all of you for whom it never ever stops. 

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