Theresa 's Story

I was 21 when I first had a bout of inner ear problems with severe dizzines and tinnitus. I took antivert for several weeks and it seemed much better. My hearing tests were fine.
When I was 27 years old my friend told me I had the tv so very loud and asked if I was hard of hearing. I was ticked off but I thought she was just trying to get some sleep and it bothered her.

Two weeks after that I decided I was having problems with hearing on the phone so I went to have my hearing checked. I was tested and then I got a hearing aid. Things like leaves and wind were so loud for the first time in years.

When I had my children I noticed my hearing was getting much worse and needed to have two hearing aids but much stronger. I could only afford one but it helped alot. I went to the ENT down south where I lived for 9 years after I had gotten married. The dr. down there said there was nothing he could do. I had nerve and conduction loss.

My mom was dying so we moved back home to Wisconsin in 1988. After my moms passing I went to the ENT here and he told me about a stapedectomy because my hearing was getting very bad. I could barely hear my kids screaming in the bathroom when one of them turned on the hot water and they got in. I felt the vibrations of them jumping up and down and went to see what was going on because I was on the phone with an agency that helps kids with developmental problems. The kids were 4 and 6 at the time. I said I would go for the surgery and was told there is a 5 percent risk of things that can go wrong. He assured me that I would be in the hospital overnight and go home and this was a easy surgery to perform a stapedectomy.

I had the surgery done and when I awoke things were spinning and I was having alot of ear pain. I asked how things went and he said everything was fine. I ended up staying for over a week because of severe dizziness and nausea and vomiting. I asked what had happened andhe told me that possibly a particle of the stapes bone fell in while the oval window was open. He had to graft that shut after he had suctioned the blood from that area. He had to put a wire in for the replacement of the stapes bone. He failed to tell me that the whole stapes bone fell into the vestibule and damaged the inner ear. I found out later by reading the surgical reports.

About 3 months later and angry as I was pretty much a invalid, I asked for a second opinion because he said there was nothing he could do to give me my hearing or balance back. I was hearing very muffled and I couldn't even get to the bathroom, I had to use a commode. I had aides come in to bathe me and I felt humiliated at the age of 37. I couldn't believe I was in a wheel chair and feeling like someone that was handicapped because of some error in judgement. If he hadn't gone back in to retrieve the stapes that fell in, maybe the damage wouldn't be so bad.

I went to Minnesota and had the surgeon that was world wide known as a great surgeon and he told me he had taught this dr. that did this to me and was very sad about it. He said if he had done the surgery first, this would of never turned out this way. He re-did the surgery and found the graft falling off and the wire was bent. If he hadn't gone to fix it, he said I would be bedridden the rest of my life and be dependent on people for all my care.
I did try to sue the dr. but because the lawyers said it wasn't intentional neglect, they didn't want to try to go after him. When the surgeon from Minnesota found out, he said he would talk with this doctor. He must of, as the doctor moved to Kentucky. I feel so sorry for those people in that state. I had heard that I wasn't the first patient to turn out like this.
After the surgery I vomited non stop all day and was given so many drugs to stop it but nothing worked. The surgeon said he had never seen a patient with a rocky recovery like myself. He finally gave me prednisone and withing 4 hours the vomiting stopped.

The next day I was stable enough and went home with the scope patch on for dizziness plus I was given antivert and valium if I needed it. The patch worked somewhat for the spins but it made me feel so dry and eyes so blurred from the eyes dilating all the time. I hated it and after several years asked to get off it.

After all of ups and downs with the spins and vomiting I finally was given the ENG with water and platforms tests and rotary chair tests besides all the hearing tests. My hearing had improved some but I had to go on Clonidine and Hismanal to get off the addiction of the patch. I was doing fine then my heart started to race. I am very sensitive to antihistimes was the conclusion they came to. I was later placed on beta blockers, some of which caused severe hallucinations at night and needed to try different beta blockers to see which worked the best for me.

I have tried Vestibular Rehab and exercises to help with pain and to strengthen my muscles. It can be a very rough time, as many of the times I ended up having IVs to help keep me hydrated. My legs tend to jerk alot ( almost like clonus ) when I walk if I over do or become very dizzy.

I have a liver disorder and so do my kids. The kids have developmental delays and are a full time job with knowing every bite of food they eat because I count their protein grams each day. Its a life threatening disorder and I have it too. I didn't know until after DNA studies. My husband had health issues too. Life is a struggle when things are good, but then to have this vestibular stuff is like a prison sentence
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I haven't seen as many doctors as some have for their dizziness, but I have seen metabolic doctors, cardiac doctors, neurologists, rhumatologists, spine doctors, internal medicine doctors, and others.

None of them can really agree on anything except for one thing. I am a challenging patient to treat.

I take Claritin for my dizziness to block out the bad signals. It works pretty fair alot of the times, but I have severe break throughs that have put me in the hospital for 10 days at a time having IVs for hydration and nausea. I take beta blockers to slow the heart down because the Claritin makes it race. I take many other drugs because of my other health issues too.

I have found my sleep has been a problem ever since I have had the ear surgerys on both ears. My left ear is the big problem. I have had doctors ask me if they could cut the nerve to kill of the right ear. I said NO. They asked me if they could inject Gentamycin in and kill my right inner ear that way. I said NO. I have asked the doctors to listen to what I want, not what they want. They have come to realize I am not trusting surgeons these days. I don't want a surgery that could make things worse for me. I was only given a 60 percent chance of it working and they told me it might not even help even if the surgery was considered a success.

So here I am almost 49 years old and still battling this vestibular disorder just like it had happened yesterday. No better, no worse. Just very trying to live this way. I keep myself busy on my good days but pay dearly for it a day or two later and end up in bed all day with the dizzys or where I can't hardly walk because the floors sway and my horizen bounces up and down as I walk. I have a cane I use everyday and a walker with wheels on the front and tennis balls on the back that I use when I am very dizzy. When things are really bad, I use a wheelchair and at stores use the scooters if I am up to it. Too much stimulation is very rough though.

I guess thats about it, and hopefully with the round of vestibular therapy my brain will learn to adapt. I have bad posture because of leaning to the right and that will be a challenge to change that when I am feeling like only the cane or walls will hold me up.
I have restless legs also, so with the pain, dizzys and legs always wanting to be moving on my nights they are restless, its hard to get a good nights sleep.

When I wake up, I need alot of time to wake up. I have the GREENS every morning and after I take my meds, most mornings this does improve during the late morning. I don't work, and my doctor told me I will never work again, I try to sleep in late after I get the kids up and fed and dressed for school and on the bus by 6:45 a.m. If I get more rest, it does help some. I think we use up all our energy just trying to do the simple things like standing up straight or walk without staggering. I won't ever take that for granted.

My wish is for everyone with this disorder to get help in the near future. Maybe there will be someone interested enough in this field that they will try to really improve our quality of life.