Dizzy Blonde Syndrome Chapter 1

Many of you received this letter from me via email. If I didn't send it to you, I apologize....

Hello my friends,

I apologize for the mass email but I have a lot of information to share with many people, so felt this was the most efficient way.

Mark and I have spent the past few days in Baltimore, visiting Johns Hopkins Hospital for some tests. I wanted to update you about what we found. Bottom line….I’m going to be just fine. J

For many years (10 to 15), I have dealt with symptoms of vertigo or dizziness (yes, you can call me a dizzy blonde), but have felt it was too mild to be anything but a minor nuisance. It hasn’t been standard vertigo – in which a person feels motion sick – it’s more a loss of ability to know quite where my feet are (as if the floor was pulled out from under me) during loud noises or during strenuous activity. This has come with some other annoyances – occasional migraines and the ability to hear a lot of internal body “noise” such as my heartbeat, eye blinks, and neck movements to name a few, as well as hyperacusis (super human hearing powers, causing sensitivity to sounds). Again, it’s something I’ve learned to deal with over the years. However, the past three years have brought me to a point that I’ve had to make a lot of lifestyle changes. I’ve begun avoiding and/or fearing loud environments (such as my beloved Colts games), swimming (being under water), strenuous exercise (like Lilly bootcamp), and overly quiet situations (because of what I hear internally). I seemed to have changed so many things that my symptoms were for the most part controllable. However, a few months ago, I was driving with the girls in the car on a beautiful day with our windows down. An ambulance passed and the loud siren caused me to become disoriented and I swerved into the lane next to us, luckily an empty lane. This prompted me to stop denying things and start investigating (with a lot of accompanying prayer).

Because of my background in audiology, I knew what this was not. It wasn’t any of the standard conditions of vertigo I had observed in patients or studied. I also understood that vertigo is incredibly complicated and that individuals with the symptoms can go undiagnosed or misdiagnosed for years. Therefore, I went on an independent investigation. I came across a condition known as Superior Canal Dehiscence (SCD). SCD is a condition or syndrome in which patients experience severe vertigo in response to loud noises, vertigo in response to high pressure (e.g., when under water or during exertion), and an ability to hear internal movements or noises (e.g., heartbeat, eye blinks). SCD was discovered in 1995 by Dr. Lloyd Minor of Johns Hopkins University and has been diagnosed in approximately 150 patients, 80 of whom have undergone surgery. I decided to email Dr. Minor in early October, and one day later he responded. After emails and phone conversations, we decided the best course of action was for me to come out to Johns Hopkins in Baltimore, where Mark and I have been the past three days.

Tests consisted of a CT-scan, audiological tests, balance tests, physical exam, eye-movement tests, and several other procedures to examine my Dizzy-Blonde-Syndrome. At one point, the doctors strapped me up w/ frenel lenses – they magnify your eyes so the docs can see movement – but then end up making you look like the animals on the greeting cards w/ the big eyes. Mark and the doctor were laughing so hard at the sight of me that I thought Mark was going to fall out of his chair. Then, the doctor told mark, “Just wait until I put on the headphones.” He placed industrial-sized headphones on my big-eyed head, with bright red and blue ear covers. He and Mark howled. I didn’t find it very humorous! About 6 hours into testing, I found myself in a room with a seasoned audiologist. I had electrodes on my head and neck and wore headphones. As I looked straight ahead, she pelted me with loud tones, measuring my responses and helping me keep from falling out of the chair. After about 20 minutes, she looked at me and said, “This next one will tell us.” I said, “Tell us what?” She said, “Tell us if you have Superior Canal Dehiscence.” Then after the tone, she said, “Oh my. You have it. You have it! I know this is strange, be we so rarely see a patient with true SCD that I’m really excited. You have it.” I started to cry. I’m not sure that it was out of sadness. I think it was relief – relief that there really is a reason for what I’ve experienced as long as I can remember – relief that I didn’t have to walk out of the hospital the way we’ve all experienced in the past, with more questions than answers – relief that I could stop looking.

All of the test results – most importantly, the CT-scan – confirmed that I have very little bone covering my balance system. Simply, this causes the symptoms I’ve described because I hear and feel sound from within my body because there is no bone keeping it out of my semi-circular canals or balance system. There are really only two courses of action with SCD: 1) learn to make lifestyle changes and cope with the symptoms, or 2) have intracranial surgery. That’s right, crack my noggin to fix what’s inside. Dr. Minor told me the decision is totally mine. He has patients who’ve decided to live with it and he has the same number of patients who have opted for the surgery. The surgery is as invasive as it sounds. They shave a 1 inch by 3 inch patch of hair near my ear, then pull back soft tissue, cut and lift a section of the skull, take a muscle graft that is mixed with cement, place the graft cement where bone should be, plug one of the semicircular canals, then replace the skull section and patch it with small titanium plates. The good news is that they no longer shave the entire head because there are more precise tests to show them where to cut! This is fantastic news because I resisted the thought of going bald! GI Jane was sexy, but how many of us can really pull that off? J

If you’d have asked me two days ago, I would have told you there was no way in hell I was going to do this. However, prayer is a powerful thing. A lot of people were praying for me – that I would get a correct diagnosis and that Mark and I would make the right decision. While at the hospital, I had to answer a lot of questions and in answering the questions I realized how much I had limited my life and to what great efforts I was going to make sure no one knows that something is wrong with me. You know me well enough to know that I’m stubborn, prideful, and want to be strong in every situation. That has been a great strength and great weakness. Answering questions made me face what I had pushed aside. I can’t let my girls grow up with their Mommy continually avoiding things that will make me dizzy. I can’t limit my own experiences because of this. God is good – He knew that I could only come to this decision if I had to answer all of the uncomfortable questions. Test results alone wouldn’t have done it.

We’ve decided that it would be best to do this in January. It will require me to be off of work for six weeks and will require us to stay in Baltimore about 9 days. I’ll be in the hospital for 3 days, and will have stitches removed on the 7th day post surgery. During that time, I’ll undergo a lot of physical therapy because I’ll need to learn to develop my balance after having one of the 3 semicircular canals plugged. There are risks to the surgery, but I have peace that God will protect me through this, so there’s no need to list those here. The doctor said that I will be on restrictions for the first month – unable to lift anything remotely heavy – but that I will be better within 6 weeks. The surgery is incredibly successful. The symptoms I have now should be totally gone after the surgery! J

Please pray. Pray for the girls – that they understand what is happening. We’ve had many friends over the past few years pass away due to serious illnesses. They need to understand that this is NOT like that – it’s merely a lack of bone that can be corrected with surgery. Pray for Mark. He’s been amazing through all of this. He knows me like no one else – and has been the only one to see a lot of the symptoms. He knows the struggles and he has encouraged me all along the way. Pray that his energy level remains and that he’s able to tough it out during the six weeks that I’m recovering. Pray for my family who I know will be there for Mark, the girls, and me. Pray for the doctors – they are amazing doctors, some of the best in the world, but they still need to keep it up! Pray for the insurance company. This isn’t an inexpensive operation and Mark and I will have to pay some of it, along with financing the trips to and from Baltimore – we need the insurance company to take care of their part. Lastly, pray for me. Because you know me well, you know that I struggle to let other people help me or take care of me. I’ve got to get over it. Pray that I will be able to step away from work and other responsibilities and let everyone else take over. And pray that when I can’t, someone will kick me in the back side and remind me.

We will know more in a few weeks, after the schedules have been aligned, and after the insurance company has done their thing. At that point, I’ll send you info about dates.

Thank you for your love and friendship.

In His Strength,
Stacey

*If you’re interested in reading more about SCD, here are a couple of links:

http://en.wikipedia.org/wiki/Superior_canal_dehiscence

http://www.scdssupport.org/links.htm