January 23, 2016 - a suggestion

http://menieresandme.blogspot.com/2014/12/about-choosing-doctor-for-menieres.html?m=1

About Choosing a Doctor for Meniere's

When considering whether a Dr is right for you, here is what I've found in relation to Meniere's.

FIRST - don't see a regular ENT, or a general practitioner, or a neurologist as your primary Dr for Meniere's. See a NeuroToloigst. Note that T in there. A neurotologist is an Ear Nose and Throat (ENT) doctor who has had additional training to focus on balance disorders, especially those that impact the brain. A regular ENT may see 1 or 2 Meniere's cases a year and may not spend a lot of time keeping up on the latest info on the disorder. A NeuroTologist will see 70 Meniere's patients and be very up to date. Not every Neurotologist is a gem... but I've been lucky to see several terrific ones and I know good ones are out there. It may be hard to find one in some parts of the US, etc... but even if you can only see one once or twice or have a phone consult, it is worth it.

There are search tools to help look for Doctor's at http://vestibular.org/

For me, once they were SURE in my diagnosis of Meniere's Disease or in my case likely endolymphatic hydrops caused MD (which is diagnosed mostly a process of ruling out other things ) and because i am Unilateral (having the disease in only one ear).

Each of my Dr's presented treatment options to me as MY choice. They were all Meniere's experts and Neurotologists in Portland OR or Los Angeles, CA. They said:

1. Meniere's Disease is idiopathic, in other words we don't know what causes it for sure. There many very well informed theories and a lot of work being done in this space. IE, Herpes involvement, etc... But the mechanism of how it all comes together is still in question, and the community of Meniere's experts has still not coalesced around one explanation.

2. MD has no cure and is usually progressive - in some patients it progresses very slowly, in others (as in my case) the vertigo is quite extensive and destroys the organ faster... it all depends. There are many treatments available that may arrest the progress of the disease for an extended period, but usually the disease progresses eventually. (There are always exceptions). There are ways to arrest that progression or slow the occurrence of symptoms through lifestyle changes or other treatments.

3. This is really the most important: It is all about YOUR quality of life. If you want to avoid procedures that may present a risk to your hearing, or required surgery, and only try medications (antivirals, diuretics, etc...) or allergy shots or similar as your only treatment that is fine. If the vertigo is happening often enough and powerfully enough that you wish to start to destroy your ear on purpose - via gent injections or sac surgeries - even though there is risk to your hearing, then we are here for you and we will do them.

They left it up to ME to tell them when I was ready to climb the next step in things to try. Sure they gave me advice and had an opinion, but they knew my quality of life is what really mattered. Mostly they were there to EDUCATE me about my choices and what they represented.

That flexibility and willingness to listen is a hallmark of Neurotologists I've liked. The KNOW they can't cure it and they know it is often progressive, so they listen and help you grope for an answer for you and don't say absolute NO or YES necessarily, cause that doesn't always fit the nature of a chronic disorder.

Even if you are bilateral, you may have different steps or may avoid some things, but the basics of how the Dr treats you and educates you would be the same.

My Neurotologists whom I've liked very much are:

Dr. David Wilson, Portland OR (my first doc, mostly retired now)
http://www.wilsonearclinic.com/

Dr. Anh Nguyen-Huynh, Oregon Health Sciences University, Portland, OR (my current Dr.)
http://www.ohsu.edu/.../services/providers/index.cfm...

Dr. Jennifer Derebery (I can't recommend her enough!), House Ear Clinic, Los Angeles, CA
http://www.houseearclinic.com/derebery

MORE BACKGROUND INFO ON THE DISEASE IS HERE

Image attached is the ladder of treatment I am familiar with that most Dr's would follow.

February 2016 - Figuring it all out

As I read more about balance disorders, I was amazed.

Regarding anxiety (which has chased me my entire life) I read...
It is very IMPORTANT to note that these Anxiety related issues are VERY common and believe it or not, go hand-in-hand with many ear related disorders --- Levinson M.D./ Phobia Free (1986) pg. 127 to quote: "The inner-ear system, your sensory tuner -- is like a collection of filters that control the flow of sensory information entering the brain. When this system is impaired there may be holes in one, several, or all of these sensory filters. If the spillage of information through these holes are severe, the brain may be overwhelmed by a flood of sensory information. When the brain is under "sensory siege," it cries out for help: it trips the FIGHT-OR-FLIGHT alarm. This results in anxiety, fear, or even total panic (depending upon the severity of the flood and condition of the alarm)." pg.126/ "The inner ear system filters and regulates anxiety in much the same way it filters and regulates all other types of sensory information. As I have mentioned before, anxiety is a physiochemical reaction, and all changes in the body chemistry are monitored, at least in part, by the cerebral vestibular system."

Regarding light and dark triggers I learned...
The brain uses a combination of balance messages inside the ears and the visual sight of lines to process balance With this disorder, the brain compensates by using more of the sight lines to determine balance. So, when I enter a dark area suddenly, my brain panics because it can no longer see a horizon.
In addition when I enter  a lit area that is all vertical lines, my brain also panics (like in a library with tall rows of books shelves or grocery store aisles)

Regarding body aches and pains...
I've been diagnosed with Fibromyalgia, but reading the symptoms for SSCD, there is quite a bit of overlap.

February 2016 - Pros and Cons And the Symptomology

The more we talked, the better my husband and I felt about the surgery. The ONLY thing in the CON column was fear. But it was far outweighed by the PRO column.

And the more I read about the disorder, the more I wanted to book the surgery.  I could check off almost everything on the list of symptoms:

• acute motion sickness (all my life)
• body aches and pains (from the brain compensating for the balance issues)
• vertigo (big time)
• anxiety 
• difficulty walking in a straight line
• difficulty following long orations
• feelings of detachment & drifting
• noise sensitivity
• difficulty filtering layers of noise to listen to just 1 
• And of course - VERTIGO

Dr. Eisen - Feb 2, 2016

The testing was painless. It took about an hour to work thru all of it. The audiologist was kind and gentle. When she was done, she excused herself and indicated Dr. E would be with me shortly.

A few minutes later, a man in a lab jacket and a big smile came in. "I know what you have and I know how to fix it."

He had me walk him through my symptoms and my triggers, how long it had been going on, what seemed to help, what seemed to aggravate it.

"It's called Superior Semicircular Canal Dehiscence. You have a hole in the bone that runs between the top of your ear and the bottom of the brain. I'm almost positive. I'd like to send you for a CAT scan to confirm that diagnosis. If I'm right, I can fix it with surgery."

A few days later, I laid on a white padded gurney, closed my eyes and slid into a CT machine. Clicking. A Green Light. Clicking and out I slid.

I went home and googled the disorder, and the surgical repair necessary. YIKES. Everything was good until I read, "Gently move the brain aside." It took me several read thru's to get past that part in the medical journals!

Dr. Eisen called me the following Monday. "The radiologist says your CT scan is negative. But when I look at it, I can spot the dehiscence. I can do the surgery, not a problem. It is, however brain surgery and a neurosurgeon will have to assist. It is easy surgery to do for me, but for you it will not be a walk in the park. It involves going into the area above your ear and plugging the hole. I'd also like to resurface the bone. Most people have a bone that is a few millimeters thick. Yours' is paper thin. I think when you sneezed last July, you blew a hole in the bone. The recovery is challenging, but you'll get through it. Come in and visit with me and we can talk more about it. Bring your husband."

Bring my husband? That's never for good news!

The following Monday, my husband and I met with Dr. Eisen. He told us about the surgery. And he patiently answered our questions.  He showed me a tiny hole in the bone that was evident in the CAT scan. "You don't have to do this. It's an opportunity to make it better. It won't get better on its own. It could and would most likely get worse."

We went home to think.

Late January, 2016 - Dr. Marc Eisen

By chance I vented in a private vertigo group on Facebook about my inability to find a doctor who could accurately diagnose and treat me. A group member posted an article and recommended I find a "neurotologist". I googled "neurotologist" and Hartford, the closest city to me and voila! up popped the Dizzy Clinic for Hartford Hospital and the esteemed Doctor Marc Eisen.

I called and booked an appointment for the following week.

Here is a list the testing he does, taken from his website: http://www.harthosp.org/hearing/BalanceTesting/default.aspx

Balance Testing

The eyes are the window to the ears. Part of the function of the inner ear is to keep the brain informed about how the head is moving and where the head is with respect to gravity. The brain uses this information to make compensatory movements of the eyes to keep them fixed on what you are looking at. This is a reflex aptly called the “vestibulo-ocular reflex,” or VOR. Without the VOR, every time you move your head or walk around, the world would look like it is bouncing and blurry (picture what happens to the picture on a hand-held video camera when you walk around with it). By testing the VOR in certain ways, an assessment can be made about how the inner ears are working. At the Dizziness Clinic there are two related types of tests for this that you may have in order to help us diagnose you. These include Video Occulography and Video Nystagmography. Video Occulography consists of a pair of goggles that you wear to block your vision, and an infrared video camera that monitors and records one of your eyes. Dr. Eisen is likely to use this during a consultation. This method allows him to see eye movements that can not otherwise be seen. Video Nystagmography (or VNG) is a battery of tests performed by the audiologist where eye movements are monitored in response to different movements of the head, motion of a light, or a puff of air in your ear canal. A sophisticated pair of goggles monitor and record both eyes during the testing. The VNG can be very helpful in diagnosing several of the problems associated with dizziness. The VNG test battery takes about an hour. Vestibular Evoked Myogenic Potential (VEMP) Testing is a brief, non-invasive test that is usually used to assess people with dizziness. It complements the VNG testing and is often performed at the same time. While the VNG test evaluates the lateral semicircular canal and superior vestibular nerve, the VEMP test targets another branch of the vestibular (balance) system, called the saccule, and the inferior vestibular nerve. During the procedure the patient lies down on her back and an electrode is attached to the skin of the neck. The patient must then raise her head, unsupported, which tenses the front neck muscles, while a sound stimulus is played in the ear. The test only takes a few minutes to perform and causes little or no discomfort. The VEMP test does not cause dizziness. The VEMP helps us identify several specific causes of dizziness: Superior canal dehiscence. A thinning of the bone between the superior semicircular canal and the brain causes a dizzy sensation induced by loud noises. Vestibular nerve disorders, such as acoustic neuromas and vestibular neuritis.

January 17, 2016 - Triggers

I made a list of triggers -

Moving from light to dark
Moving from dark to light
Lifting firewood
Lifting groceries
Moving through complex patterns or mazes
    Getting from the car in the garage into the house and into the powder room
    Going from the family room, thru the kitchen, left into the hallway, down the basement stairs and back up
    Leaving a garden center and moving between outdoor tables
    Walking outside along a busy road at night - something with the headlights?
Bowel movements
Feeling emotional & holding back tears
Bending down
Moving quickly, turning quickly, rushing up a flight of stairs
Anything that raises my blood pressure, especially exercise

January 16, 2016 Taking Stock

Mid January found me bewildered. I made notes.

I had seen my GP, who kindly gave me a thorough exam and a referral to an ENT, with the tenative diagnosis of "stones in my ears." I read up on that. It made sense.

I went to the ENT, who seemed to prefer Botox over wellness. He did the Eply maneuver on me and gave me exercises to do at home, with the diagnosis of "stones in my ears". I did the exercises, but except for making me nauseas, they were of little help.

I went to the Acupuncturist, who diagnosed a spleen problem, lit some pot-like weed on stick needles on my body, and demanded I stop eating conventional foods.

I went to the Chiropractor to took xrays of my neck and clicked his tongue "tsk tsk tsk I don't know where to begin." He diagnosed a spine problem, including bulging disks and arthritis. He assured me he could fix it.

The optometrist gave me a clean bill of health (or no change in my vision issues). The dentist saw a need for dental work, but had no idea of how it might be related to the vertigo

6 medical professionals and no help. I'd been spinning since July. Close to 100 episodes in total.