An SCDS-Friendly Wedding

The following blog post was originally written September 2014.

Many people set out to have a family-friendly wedding, or a themed wedding, but not too many actually try to plan a SCDS-friendly wedding. When my husband and I got engaged I did not have SCDS symptoms, and so we began to plan an evening wedding complete with dancing, drinking and mood-lighting. After I was diagnosed with SCDS and underwent my cranial surgery, I realized that a party style wedding was nowhere in my future, and in fact, I would be happy to make it down the aisle without donning a matching cane to go with my dress.

And so I used my event planning background in addition to all the things I learned about living with a vestibular disease to come up with a recipe for a SCDS-friendly wedding. Here are some important elements. I doubt my SCDS readers are planning a wedding themselves, but living with a vestibular disease often requires some thinking outside the box in a variety of settings, and it’s always good to have a game-plan when entering into what I call “vestibularly hostile environments” (VHEs for short).

Plan the excitement early in the day. Like most people with SCDS, my brain is constantly trying to process mixed sensory messages such as shaking vision, the feeling of falling, brain fog, and various internal noises from morning to night. I have found that if I get enough sleep, morning is the best time to take on challenging situations such as crowded rooms, loud music and lots of talking. (Note: just talking can be a cerebral challenge because many of us have autophony and our voices are louder because we hear the speech from the inside hole in the semi-circular canal. This loud sound often leads to dizziness for SCDSers who have the Tullios symptom). For this reason, the wedding was at a peaceful and quiet 11:00 am rather than a louder and more festive 8:00 pm.

Spend time outdoors. I don’t know the science on this one, but outdoor gatherings are easier than indoor ones for me. The worst possible scenario is spending multiple hours in the middle of an enclosed room with lots of background noise and loud talking. Instead I opted for having part of our festivities outdoors (yes, I know — Seattle rain. Best not to bring it up!) and for the portion of the wedding that was indoors I was seated close to the doors.

Avoid dancing. This one makes me just laugh to write because it’s so obvious. I used to love to dance. Could I maybe have pulled it off? Who knows. But toppling over mid-wedding isn’t a lovely bridal look so I skipped it. Besides, music involves loud music (see Tullios symptom above).

Skip the Alcohol. This seems to be an agreed thing among those I meet with SCDS, but our brains can’t really handle alcohol as well as they used to. It may be that so much of our brain-power is being used on vestibular functioning, that it doesn’t tolerate being more clouded. It seems that just a half of a drink will either make me feel like I have had 3 drinks, or give me a migraine, or both.

Keep it small and simple. Small crowds lead to less noise and smaller weddings lead to less planning and therefore less stress. Stress (and noise) are two things that seem to exacerbate SCDS and make symptoms worse for me, so the more those things could be minimized, the better I felt. Of course minimizing stress is nearly impossible during a major life event, and truth be told I felt dizzier in the two weeks leading up to the wedding than I had before, but it could have been more of a challenge.

So that’s my recipe for a SCDS friendly wedding. Despite all those precautions I still ended the day with a migraine, had several moments when I felt like I was on a boat, and yes, I was dizzy when I walked down the aisle. Did my guests notice? Probably not. But like many other instances with this condition, I was amazingly thankful I was able to pull off the event – a wedding that had been canceled and re-planned multiple times. Oh yeah, and instead of gifts my husband and I opted to ask for donations to the Vestibular Disorders Organization – an online resource that offered tips on coping and living with vestibular conditions. We considered it our small but well-meaning effort to give back to a website that helps people get through this condition.

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Why There Will Never be SCDS Fundraiser Runs

This blog was originally written April 2014.

I recently visited my surgeon in New Orleans for a follow up appointment after my surgery. It was a bit different than I expected. Although I’m healed on one side, I’m bilateral SCDS so my right side is acting up. The more I get back to my busy normal routine, the more I notice it. I’m now well into feeling like I’m on a boat on a daily basis, getting frequent headaches, and occasionally stumbling in the evening time when my brain is no longer able to handle the coordination between my eyes and broken vestibular function.

Being that I just had surgery and it seemed to work, I thought I would be scheduling my next surgery for the dehiscence lurking deep the other ear. Alas, since my symptoms are still relatively mild, and my doctor likes to reserve surgeries for those who have no other options, we will be taking the “medical management” approach to try to alleviate my symptoms. This includes taking a diuretic, restricting any activity that would cause an increase of spinal-cerebral fluid pressure in my head, and cutting sugar, sodium, and caffeine. Let me reiterate that last part in case you skimmed it: he instructed this Seattle-based woman to give up caffeine. (Ba ha ha ha!!!)

A person can go through a myriad of emotions with this disease and after that appointment my immediate feeling was despondence. After a week or so of moping around like a child that didn’t get the big expensive toy she wanted, I’ve toughened up and decided to move on with my life — my dizzy, rocking, stumbling life– with the best attitude I can muster.

And I’ve decided to try something that is a bit nuts. I dug my running shoes out of the closet and began running again. For those of you that don’t experience SCDS first hand, this is what running is like: your vision bounces like a bad amateur video. I’m not talking slightly shaking, I’m taking something to rival the filming of The Blair Witch Project. It’s impossible for me to watch this for more than a second or two, so I look down at my feet as I run. After the run, my autophony causes my heartbeat to pound in my ears with my vision shaking in rhythm with it from side to side. So are all the visual disturbances and disequilibrium worth the running? For me, a previous marathon runner and lover of exercise… yes. But my newfound good-bad running habit is once again a reminder that for those of us living with SCDS even the little things come with a cost – and we each have to decide how much to “pay” for the things we used to love.

And the other observation: If SCDS ever reaches mainstream attention and people raise money for its research, there will NEVER be a fundraising run.

We will all just walk.

A Narrowing Window of Time

3 months ago I shuffled into a hospital with bouncing vision, the aid of a cane, and a brain that was consistently forgetting things. With a shaky hand I signed my name off to the surgical risks of brain damage, paralysis and even death. Crazy enough I will do it once more. Despite all that, I now feel more fortunate than I ever was before. Because before being diagnosed with SCDS I took so many basic and simple things for granted. Today, with one surgery behind me, and another in my future, I am appreciating the narrow window of time that I am in.

There are few things in life that can make your attitude hit the “reset button” but after living some if my life in the way that an isolated, disabled person lives, I feel find that my outlook on life has certainly been reset. In the months leading up to my surgery, I was amazed how much just walking made me dizzy. And after surgery, I have been continually amazed that I could walk without being dizzy.  In my last two months when I felt overwhelmed by one of the challenges that parenting or work threw at me, I took a walk and mentally boiled my worries down to a simple thought: I am walking without a cane or dizziness, so therefore life can’t be that bad.

But as those of us with bilateral SCDS know, this is a condition without a guide book to refer to, and each one of us who suffers from it will find out how their condition evolves in due time.  It is not documented anywhere how many cases there are in the world. There is no predicable path the deterioration of one’s balance will take. And there is no rhyme or reason to the symptoms I will get, when they will come, and how bad they will be. This is a newly discovered disease, and we SCDS’ers are like newly minted actors doing improv as we deal with this bizarre condition.

And so for this moment in time when I can walk, I am appreciate just walking. Although I still don’t have all the hearing back from my surgical ear, I adore the sounds of my children singing and playing.  Even though meeting up with friends for coffee or doing my freelance work in trendy Seattle coffee shops makes me tired, I go out because I still can function in those places. The Tullio’s effect that I had before my last surgery (dizziness caused by sound) has not yet set in.

Yet my wonderful window of non-symptoms is already narrowing. My right un-operated inner ear is home to a 6 millimeter hole in my superior canal, plus another small hole in posterior canal. My symptoms on that side were somehow masked by the symptoms of the left side, which is common. My walking, chatting, going-out-of-the-house days are numbered. Unlike the first time, the symptoms are coming back slowly and differently. In this round when I laugh, cough or raise my voice my vision trembles as if I were witnessing an earthquake, and more and more I find it hard to focus on a computer screen. Both symptoms which I didn’t have before.

Will it get worse?  No idea.  I only know that I am determined to live my life as positively as I can. And take as many appreciative walks as I can before I take the big walk back into surgery.

Invisible Healing

At about 3 weeks post-op my entire being seems to be receiving mixed messages. My energy level varies from full of energy and wanting to take on insane things like reorganize my filing system, to flat-out hopelessly exhausted. I can go from one to the other in the time it takes me to make a box of Kraft Macaroni and Cheese.

Eyes and Inner Ear

My eyes and inner ears think that they have this whole relearning to walk thing down by now, but I am not so sure. They second week or so of recovery was “floaty” at best, and staring at a spinning room at worst. Apparently it is not uncommon to have bouts of BPPV as you recover from this surgery according to Dr. Gianoli, so I’ve been experiencing a whole new vestibular disorder as I try to heal from my own previous condition. This is what they mean when they warn you, “Before your get better, you are going to get worse” post-surgery. During recovery week number 2, no one in the house would allow me to go or down stairs in my house, and my kids were on something I could only call “stumble watch” and would quickly usher me to a couch at the first sign of disequilibrium.

Brain

The most amazing/fascinating/horrifying thing has been the developmental healing of my brain. I was prepared for the fact that my walking would be so poor that I would still need a cane for a while, but unaware that my fine motor skills would be rusty as well. Staring week two, I was only able to read a few pages of a novel at a time and when I tried to write a thank you note my shaky handwriting was painfully messy. By the time week three was here, I was making BIG changes, meaning that reading a novel took less concentration and focus, and I began to stake small efforts at using my laptop. But only about an hour at a time on the laptop, because for some reason the process of writing, scanning and reading all together are more than my mind is ready to take on.

I have also experienced the typical reaction of a surgery in which your brain has been, for lack of better words, nudged around. (Note that the medical word on my surgical report was that my brain was “retracted” during the process of resurfacing the superior canal, but since no one really wants to visualize their brain being “retracted”, we will go with the gentle phrase “nudged around”. The result is I am often searching for the right words and forever writing down everything I might need to remember.

Temporarily Deaf
And being temporarily deaf is something interesting. I have a high pitched tinnitus in my surgical ear that goes on day and night and occasionally changes to a higher or lower tone. According to Dr. Gianoli, only 3% of his patients have lose their hearing entirely and so I am likely to continue to be deaf until between 2 to 9 months post-surgery. And that is due to the packing that he put into the middle ear to give added support to the reinforced round and oval windows he repaired. (Yes, I have packing in my ear. Again, something I choose not to think about too much.) . I do seem to be able to hear a little bit in the left ear, so I am assuming that I am not going to be one of the 3% with permanent hearing damage.

But all in all, each day gets better. And what all these recovery symptoms have in common are that they are invisible to those around me, much like the original bizarre symptoms of SCDS. I alone witness when the script on a laptop screen gets blurred, or when the passing cars make me feel like I am falling, or when the tinnitus in my surgical ear moves from a high pitch tone to the sound of crackling paper. The recovery, like the condition itself is, in so many ways, all in my head.

Surgery Day

First off, I should say this blog post is not for everyone. If you are casually curious about how I’ve been doing, this blog post is not for you. But if you are interested in the actual experience of how SCDS is “treated” through surgery, or if you are an SCDS sufferer and want to know what will happen in surgery,  climb aboard.

I should warn the reader that this may not be the prettiest of blog posts.  My purpose in writing out the experience is not to be literary or clever with words.  It’s to be straight forward. In the several months prior to surgery when I was trying to decide which surgery to commit to, I read many other people’s surgery stories. It helped me to prepare myself for what was to come and I am hoping that my story might be able to help someone too.

My Understanding and Choice of Surgery
There are a few different approaches to surgery for SCDS. Because I am bilateral (got holes on both sides) and know I am a candidate for having surgeries on both sides, I chose to have a surgery in which the superior canal with the dehiscense would be capped off, rather than plugged.  This is also known as resurfacing. In the research I conducted, I found that people needed to have at least one side of their semicircular canal functioning for the well being of the vestibular system. (Note: this is just my experience in learning about SCDS. I am not a medical professional and anything I write here should by no way be taken as medical facts.)

I chose Dr, Gianoli in Covington Louisiana to perform the surgery based on his skill and experience in this approach.  In addition to the resurfacing procedure, Dr. Gianoli also has found success with reinforcing the oval and round windows of the inner ears. His reasoning is that the process of resurfacing can cause additional pressure on these other windows in the inner ear. The pressure could cause fistulas, which would then compromise the vestibular function.  So the resulting description for the surgery that I had is called a “mid-fossa approach with a mini-craniotomy”.  The “mini” just means he cuts into as little space as possible in the skull and approaches the inner ear and does minimizes interaction with the brain. So it is a two-part surgery: going through the skull to resurface the canal and going through the ear drum to reinforce the oval and round windows.  If this sounds confusing and overwhelming then I am probably explaining it correctly. It really is.

So here is how this took place for me.
On the day of my surgery (Thursday, January 30th) I checked into North Oaks Medical Center at 5 am. I had already answered many pre-admission questions over the phone the day prior, so the initial steps for checking in were to check my vitals, get me into a gown and have me put on those lovely tight leg stockings that feel ridiculous but are supposed to decrease the chances of blot clotting. They also started an IV at that time.  I also met briefly with Dr. Gianoli to discuss any questions and then spoke with the anesthesiologist. My family was able to stay with me during this process which helped me feel less nervous.

When it was time to go back to the operating room the kind nurses gave me what they referred to as some “Happy Juice” (which I didn’t question at the least, because when you are going into a surgery on your skull, you will accept anything labeled “happy”) and wheeled me into surgery room.  The last thing I remember was telling the nurses my opinion of the Seahawks winning the Superbowl (a clear indication that the Happy Juice was working, since I know next to nothing about football) as they gave me the epidural in my back.

Apparently while I was in surgery my family was kept updated on my progress in the waiting room by way of a nurse telephoning out to the waiting room every hour, but the reports were brief. After the surgery Dr Gianoli met my family in person and gave more details answered their questions. Basically there were no surprises and everything went as expected. The dehiscence was about 3-4 mm in length, which he had known from the CT scans, and the procedure went smoothly.

When the surgery was over I woke up in recovery room. I think they asked me questions to check my awareness levels as I drifted in and out of sleep. Then they wheeled me to my ICU room and my family met me there. I was very, very dizzy and my head hurt and felt nauseous —  all very common reactions. I was able to walk to the bath room (which was 100% inspired by the male nurse offering to fetch me a bed pan). My legs were very wobbly and it took two strong adults to walk me there. The rest of the day I floated in and out of sleep with a cocktail of pain IV “goodies” (their word, not mine. I love people in the south. I swear I heard also enough colloquial phrases to last me a life time.) The “goodies” included morphing for pain, steroids to minimize swelling, anti nausea meds, and x. I was sleepy most of the time and I know that I wasn’t always thinking clearly because I kept asking the nurses the drug to stop the dizziness. In my right mind I know there isn’t a drug to stop that. The first day I was also allowed two liquid meals (lunch and dinner including a coffee from the coffee bar down stairs. (Hey, it’s a liquid and I’m from Seattle.)

In terms of sounds in my left (surgical) ear, I was not able to hear much, but I know the sound in that ear will come and go for the next couple of months. Dr Gianoi put in a packing filler when he did the round window and oval window reinforcements to keep pressure in that area and protect the new extra layers there. Apparently some of my hearing ability will be determined by how fast the packing disintegrates. It could be anywhere between 2 to 8 months with average being 3 or 4.

The next day I was released at 10 am. I will write again soon with a summary of the following week post-surgery for those of you still curious.

A Little List of Things that Won’t be Missed

As I approach the day of my surgery, I have been thinking of all of my symptoms and wondering which may finally be a thing of the past and which ones will hang on due to the pesky dehiscence on the other side of my head.  Here is my little list:

 SCDS Symptoms I Simply Won’t Miss
  • Walking with a cane
  • The way people look at me, down at my cane, back and me and then immediately away, when  I walk with a cane.
  • Hearing my heart beat loudly when I walk up the stairs
  • Watching the world bounce to the beat of my heart when I walk up the stairs
  • Hearing my neck muscles move
  • Hearing my eyes move in their sockets
  • Hearing a “swoosh, swoosh” (pulsatile tinnitus) in my left ear first thing every morning and last thing every night
  • Hearing fluids moving in my head (what ARE those sounds anyway?!)
  • Being afraid to walk into a store
  • Feeling my flight or fight instincts kick in when I walk into the store…. like a field mouse in an open field of vultures…. my body simply knows it is not a safe environment
  • Feeling like I’m about to fall — all the time
  • Being too exhausted at the end of the night to read a book well to my daughter during book time
  • Watching my vision bounce when I eat a potato chip
  • The awful realization that my brain isn’t able to work the way it did before. Now parts of my brain that should be working on reasoning and thinking have been reassigned to the impossible task of connecting the mixed signals of my visual and vestibular systems
  • Waking up in the middle of the night and remembering that soon someone will cut through my skull in order to fix me
  • Having to hold a shopping cart for balance at a store
  • Declining any invitation to go out because I am afraid I’ll get too dizzy
  • Migraines…….every day.
And because I fully believe that there are often good things hidden in the bad, here are a few unexpected blessings that my SCDS has brought me:
  • I’ve experienced an outpouring of love and support from my community of friends, family and even slight acquaintences  through words and actions
  • I’ve gained an understanding and compassion for those with disabilities. I’ve learned  that there are many, many people who are better than me at showing this compassion (like the hair stylist who cut my hair in a fashion that will hide my head being shaved   —- and she chatted comfortably about brain surgery while doing so).
  • I’ve realized that even when I’ve read an awful-sounding symptom and said to myself “I will just die if that happens to me”…. when it did happen, I did not die.
  • I’ve seen that my dear 11-year-old son’s first reaction to me having a cane, was not to freak out, but rather to pick it up and begin dancing a Fred Astaire style dance.
  • I’ve held hands with my 9-year-old daughter through doctors visits and tests, and together we have found that quite often the “scariest” things are the things we don’t know much about or understand.
  • And, finally, I have found that by losing my balance physically, I have gained balance in the way I view the world around me. 

Close Your Eyes As You Run Off the Cliff

My sister once took a hang gliding class and when the time came for them to make their first flight the instructor told the students that they should close their eyes when they run off the cliff. Why? Because it’s counter-intuitive to run off a cliff. Your body won’t let you do it. In the name of self-preservation, your brain tells your body that it should stop running before flinging itself into thin air. “This doesn’t seem like a good idea” your mind is trying to say.

I bring this up because I am finding that scheduling your own craniotomy falls into the same category.   No matter who or when the medical assistant asks me, “Would you like to schedule your craniotomy now?” the answer is always “No, thank you.” I can’t help it. No, I would not like to schedule an exact time and date or a surgeon to cut through my skull. No, I’d rather not set up the procedure where a teeny tiny hole in my inner ear is plugged up with teeny tiny bone matter, all done I assume using teeny tiny tools.  No, I am not ready to face the risks of loss of hearing, facial paralysis and brain damage.  Nope, sorry. Not today.

And so my craniotomy is not yet scheduled. Despite the fact that my world is narrowing. Despite the fact that last weekend I could not make it through church because the Christmas music made me so dizzy that I thought I might faint. And despite the fact that it has taken me two whole days to recover from my daughter’s nine year old birthday party. I find myself in a quandary. I have two road to go down. One is essentially getting narrower and narrower and soon I risk the chance of becoming so disabled that I can no longer walk it. I won’t be able to safely drive or play with my kids or take short walks. The other road is well, kind of like a cliff with the hang glider. I can run at it full speed and commit to a procedure to “treat” my SCDS with a mid-fossa craniotomy done by arguably one of the best doctors for this type of thing.

With the support of my family the problem is not the money.  The problem is not the lack of surgeons. The problem is me being able to take a deep breath and close my eyes as I run off the cliff.