Dandy-Walker Syndrome Archives

September 18, 2016August 31, 2016

Spoonie Story: Kate

Hello, my is Kate and I’m missing part of my brain. That’s my ‘go to statement’ when I’m told to introduce myself and to name one interesting thing about me. It usually stops people dead in their tracks and I get statements like, “but you’re so NORMAL” and “I never would have guessed”
Well, it is all true; I was born with a congenital birth defect called Dandy-Walker Syndrome. Now Dandy-Walker is referred to in many different ways but they all basically refer to the same thing. I’ve argued with other patients over this so I just back off but from what I have read it’s all the same. Dandy-Walker Syndrome is a condition in which a baby is born without a portion of their Cerebellum. The cerebellum is located at the base of the skull and is important because it is involved in voluntary motor/muscle movement and things like but not limited to:
• Movement
• Sensory processing
• Olfaction (sense of smell)
• Language and communication
• Learning and memory

DWS affects 1 out of every 2,500 live births but the actual number of individuals affected is suspected to be much higher because of how much the syndrome varies from individual to individual.

My parents got this diagnosis for me when I was 5 days old and my mom was first able to hold me. You see I was born 5 weeks premature and wasn’t breathing. Mom and I were loaded into an ambulance (which had to stop twice because I stopped breathing) and sent to a larger hospital with a NICU, there I spent my first 16 days of life. While in the hospital during those first days I had a CT scan that showed the Dandy-Walker Syndrome and it also showed that I had hydrocephalus.

Hydrocephalus is an abnormal buildup of spinal fluid in the brain. It affects 1 out of every 500 live births, hydrocephalus can also appear later in life because of illness, injury, or the way the body reacts to aging. Anyway, in my case the Dandy-Walker Syndrome actually caused the hydrocephalus. With most DWS patients the 4th ventricle in the brain is enlarged preventing the flow of spinal fluid and causing a buildup to occur.

When I finally went home my mom started doing PT with me. Before she passed away in 2006 she showed me the folder of exercises she did with me every day it was at least an inch thick maybe larger!

When I was 4 months I was finally at a weight where the surgeon felt comfortable operating. After my first shunt placement I spent 3-4 days in the hospital at Children’s Hospital of Michigan. An interesting fact I recently learned: the surgeon who did my first surgery was the first Black Neurosurgeon in the US as well as the first woman Neurosurgeon her name is Alexa Canady, MD and I would love to meet her. My parents told me stories about her growing up, but I digress.

After that surgery I continued to struggle, according to my parents, to hit normal milestones. I started to walk then I got glass because when you have hydrocephalus your eyes are normally affected. Then I had four eye surgeries to tighten and loosen the muscles. In the end I didn’t end up walking till I was about three.

The rest of my childhood was pretty normal, my parents impressed on me that I had a shunt and had to be careful, but that was about it. I did normal kid stuff except I didn’t do the gymnastics stuff in gym class ever. When I got older I helped on the farm baling hay and straw, throwing off the wagons and stacking in the mow.

When I was 13 I had my first revision and I was no longer allowed to help on the farm. I then got excused from gym because kids are mean, they would throw stuff at my head. Not really safe to be around plus I could feel the shunt move every time I ran, which was very painful. The rest of junior high/high school was spent in and out of hospital having revisions. It made life, shall we say, interesting? With my first revision I was out of school from the end of October till January because I got a shunt infection and well you can’t go to school with an IV pole….

I graduated high school on time with my class and started at community college. My first year at school I ending up having an emergency surgery for a blocked shunt. I woke up from that surgery completely paralyzed on my left side. Working to regain function was so much fun! By Thanksgiving that year I had graduated from a walker to a cane, and was walking unassisted in the home. By New Year’s I was going out without the cane but still used it a lot (It was my baby blanket).

I went through a number of surgeries my first two years of college. When all was said and done I ended up transferring to a school three hours away from most of my family and didn’t end up having surgery again until my last year on campus. That was quick and easy in and out surgery and even though I wasn’t back on campus I worked on my online classes and papers I had to write waiting for the staples to come out.

After my graduation in 2014, with a BA in Pastoral Ministry, I skyped into my final 2 classes for my Hospice degree while completing an internship at a local hospice, it was a great experience. In 2015 I started going back in Children’s Hospital of Michigan and seeing a Pediatric Neurosurgeon who gave me a new programmable shunt and I had thought put an end to my problems. In July of 2016 after continued problems with my shunt and going back to using a walker because of being unsteady on my feet I sought out the help of the doctors a Michigan Head Pain and Neurologically Institute. They diagnosed me with Benign Intracranial Hypertension, which is funny because I have a shunt… I’ve recently started treatment and am hoping to start living the life I’ve dreamed of working with hospice or hospital patients taking care of their spiritual needs.

May 16, 2016May 15, 2016

The Kate Kronicles: The Great Move of 2016

As Spoonies, I know we can all appreciate the energy and sometimes struggle required to things normies make look so effortless. Well, it took two days and ALL my spoons but I did it! I’m officially moved into a new barrier free apartment. The move wasn’t that horrendous or that bad in all reality. All I did was move from an upstairs apartment to a downstairs apartment within the same building. I really lucked out, unlike the people who have had to move further to be in an accessible home.

Frustration

This whole move/pushing for an accessible apartment started over the summer as I started having more and more problems with my balance and going up the stairs was becoming increasingly hard for me to do. I kept bugging my landlord telling him I needed an apartment in a building where I did not have to use any stairs. Finally in March of this year I found out the barrier free unit in my building was empty. I went to the manager of the complex and requested a move. The fact that I was requesting a barrier free unit meant I had to do a lot of paperwork and have my doctor fill out papers stating that said I would benefit from a barrier free unit. She even went so far as to write me a script for a walker. The walker has helped me so much and helped me to feel so much more stable on my feet! She also wrote for me to get a hospital bed which has helped with my headaches because I can sleep at an angle that helps my shunt to work better at night.

The move

Finally a month after I turned in all the paperwork I finally hear back! My landlords manager approved my “transfer” to the barrier free unit. I was over joyed; finally, my struggle with the evil stairs was coming to an end. I enlisted the help of a couple from my Church to help me; my dad told me he could help me the next day. So, I asked the husband if he could be available on that day and he could.
When Monday the 25th of April came, I was excited. I got up and finished some packing. After about an hour of that, I went to sign my papers. By the time I started hauling boxes (small, light boxes) I was done, this Spoonie tired herself out faster than she thought she would. Around noon the husband called and asked if I could use some help. “OF COURSE!” with his help we killed it. All the small boxes down stairs and some big ones.

He moved my living room save the furniture, my bathroom, linen closet, after about 2 hours at work on that task, he went home to leave me to unpack and decided where I wanted stuff, when his wife came over after she got out of work, she found me on my floor finishing putting my linen closet in order. I had made quick work of the bathroom so everything was kind of put away. We took a couple boxes back upstairs and started moving my kitchen stuff downstairs and putting that away. In no time, we had moved that and a few other things downstairs, it was getting late so she asked if I was hungry, “OF COURSE!” so we went to a small restaurant and got some dinner, chatted with people from our town, and relaxed. At that point I was running on adrenaline and worry over hitting my head on the freezer door while cleaning out my fridge. The joy of having a shunt, always waiting for the other shoe to drop and end up back in the hospital.

When I got back to my new apartment, it occurred to me I couldn’t sleep there because my new hospital bed hadn’t arrived like it was supposed to, so I went upstairs and slept in my Lazy boy because I had already stripped my bed and was too tired to remake it. I slept surprisingly well and when morning came, I did not want to move! I was sore, so sore!

Day 2

The second day of “the great move of 2016” started with me taking a few small things downstairs then waiting for the delivery guy to bring and set up my new bed. While waiting I unpacked some more things and tried to organize as much as I could. Between you and me I hate, hate, HATE clutter especially my own. As I did that I also made a list of organizing products I wanted to purchase to make my life easier. Most of them I had been thinking about for a while but I hadn’t added to my Amazon wish list or even attempted to purchase. I was still really tired and probably should have been attempting more sleep.

Around eleven a.m., the delivery guy finally showed up and setup my bed. While signing the paperwork my dad showed up and the guy walked him through the bed operations while finished. All I can tell you is when I saw that bed my eyes lit up because I could just imagine the relief of being able to wake up without headaches or a stiff neck because I fell off my mountain of pillows.
Shortly after my daddy arrived I called the guy from my parish who had helped me the day before and him and my dad made quick work of moving the rest of my stuff downstairs into my new place. I was really surprised with how fast it went, then again when you look at the amount of stuff I actually have I don’t have that much. Anyway, after they finished moving stuff down I worked on putting drawers back in my dresser and made my bed with my new purple sheets and my Spoonie pillowcases (which can be purchased at https://www.gearbubble.com/gbstore/spooniesforlife). After I bid farewell to the guy from my church me and dad went out for food then he dropped me off back at home and I fell asleep while he took my double mattress to my grandparents’ house so that my sister can use it in a couple months when she moves into a place of her own. The next day I stayed in my bed all day my legs where so sore and my back hurt so bad that I needed my walker to get around.

Recovery

While lying in bed for two days only getting up for food and bathroom I did a lot of thinking about how nice it was to finally be in a place where I could have my walker ALL the time and actually USE it when I need it. I also reflected on how much I hated going up and down the stairs and living in the font of the building and listening to all the noise from the parking lot. It really is a blessing to be in the back of the complex, things are quiet! Quiet is nice when I’m having a bad head day. The new bed is also an awesome help, here I am a week out and I’ve only woken up with one headache which is way better than before and no neck pain! I’m in love with this bed! I’ve never met a comfortable hospital bed but this one is pretty nice and I can’t complain no back pain or any other pain at all!
While the move was stressful and even thinking about moving all my stuff was stressful. However now that the move is over with and the last box is unpacked and things are finally going up on walls I’m so much happier and I’m sure that this will help my health so much because I don’t have to worry about blacking out climbing the stairs or getting dizzy and falling down the stairs! So excited to spend the next couple years down here in the back of the building, now to get the rest of my life in order, so many things to do so little time!

April 21, 2016May 11, 2016

The Kate Kronicles Part 2

Hello Again! Sorry it’s been so long! You know the life of a Spoonie can be unpredictable. Are you ready for the awesomeness of Part 2 of my life? Part 2 has been full of more challenges and gifts then I could have ever wished for. However, before we get to there are a few things I forgot to mention.

2009

In 2009, with the help of Eric Cole, the founder of the Dandy-Walker Alliance I wrote a resolution to make May Dandy-Walker Syndrome and Hydrocephalus Awareness Month in Michigan. The Dandy-Walker Alliance is the only national organization that advocates for people and families affected by Dandy-Walker Syndrome in any one of its several forms. That resolution was introduced and passed in the State House of Representatives and I was there when it was!

NEW CHALLENGES

In January of 2010 when I was released from the hospital, in a very weak state, I decided it best to withdraw from classes and take care of myself. Several weeks after I left the hospital I went to see my eye doctor who informed me that there was nothing that could be done to correct my lazy eye that had “come back”. I had, had eye surgery as an infant to correct my lazy eye and yet the guy who I had been seeing all these years told me there was nothing to be done. I got mad and started to see if I could learn more find a solution. I then stumbled upon my current Neuro ophthalmologist who told me that if he didn’t operate I would lose sight in my left eye. Well, I let him cut me open in March of 2011 during Spring Break of my first semester at Madonna University.

MADONNA UNIVERSITY

My time at Madonna while enjoyable was full of pain and struggle. I started at Madonna in January of 2011 pursing a Nursing Degree, After struggling with classes I was blessed to spend a day with one of the, Religious, Sisters on campus who happened to teach in the Nursing program. During the day she took time to get to know me and about my health. After a full day she made the suggestion that I look into Pastoral Ministry, then another Sister recommended I look into Hospice.
And here I am several years later 2 degrees and no job… While at Madonna I had a lot of fun fulfilling experiences. I volunteered in the Campus Ministry office and worked on the retreat team and was the leader of a Franciscan Spirituality group on Campus. I went to a conference in DC and spent a weekend at St. Katherine’s University surrounded by Sisters for the first Annual National Catholic Sisters Week kickoff event! All of this was exciting and a bit challenging. I had surgery after DC to switch shunt valves and tubing because I was over draining or so I thought, and the tubing was causing me a lot of pain. After that I was nominated to accompany the same Sister who suggested I look into Pastoral Ministry to St. Kate’s. That was a fun weekend but I was still feeling a bit off, but I was able to fake my way through till I got back at school.
At MU I had daily contact with a RN, and many of my instructors that semester I had, had previously so I couldn’t fake my way through… Despite all of that I somehow managed to make it to graduation in May 2014 to obtain my BA in Pastoral Ministry.

HOSPICE

In the fall of 2014 I started the last part of the hospice program! I moved back home, and within a few months was living in a new town surrounded by new people as I started the first of two internships at United Hospice Service. I did a little of everything and was able to spend time with all the employees and learn about their different jobs whether it was the Volunteer Coordinator or the IT person, though a great deal of my time was spent going on home visits with the hospice chaplain. I really enjoyed my time interacting with patients and families, bearing witness to their struggles, joys, and life. This experience taught me a lot about myself as well as the ability of the human spirit and body to flourish despite illness and hard times.
My year with hospice led to my graduation of May 2015 with a BS in Hospice and Palliative Studies.

TODAY

Since my time interning at the hospice I have become a volunteer and do my best to go every Tuesday to help in the office. I’m also working on getting back into direct patient care. Since the series of surgeries I just went through I’m working on regaining balance and confidence, plus having hair is important. I only say having hair is important because I don’t want the patient’s attention on me. That will come in time until then I just keep pushing on doing what I need to.

BEING A SPOONIE

I’ve learned that being a Spoonie is not for the weak, we are some of the strongest people you will ever meet. Anywho, if you have any questions for me please comment or drop me a line on Facebook. I am here to share my story and experience of how I got through school or came to terms with my illness. I want to hear from you guys. “What do you want/need to hear?”

Article submitted by Kate Dekoski

March 22, 2016March 22, 2016

The Kate Kronicles: The Beginning (Part 1 of 2)

Hello world! This is me – Kate – a crazy, independent, and compassionate young lady who is living life the best she can with the tools she has!

THE BEGINNING

I was diagnosed with hydrocephalus (water on the brain) and

(missing part of Cerebellum, enlarged 4th ventricle in the brain) at five days old so I guess I’ve kinda been a spoonie my whole life without knowing it. I received my first shunt when I was 4 mo old.

HELL BREAKS LOOSE

My childhood was pretty normal until I turned 13 and started experiencing symptoms of a shunt malfunction, of course I didn’t know because this was my first malfunction. After my revision I developed an infection and had to have my shunt externalized then removed for a period of days. I don’t remember anything during those 5 days but apparently I refused to talk to the RNs, but answered any question asked by my mom or my surgeon…
Anyway after about a month I finally got home weak and tired but happy to be home still on antibiotics but home all the same! Then back in just before Christmas because my shunt migrated out of my ventricles, so I had to have emergency surgery. That surgery was done by at that time a 72 year old surgeon who is still in practice today and last I heard operating!

The rest of my JH and high school years were filled with emergency surgeries most of those where after middle of the night trips to the hospital and large quantities of medication to control my pain; which at many points was bad enough that I was throwing up.

LIFE CHANGES

I remember one time when I was about 15 or 16 going to the ER and having a Spinal Tap done to check the pressure in my head. My neurosurgeon at the time said it was so high that I should have been unconscious! Jokes on him because I was awake and apparently had the mouth of a trucker… I don’t remember a thing, but apparently I did have choice words for him.
During this time my mom was slowly dying of an aggressive form of Brain cancer, she passed when I was a sophomore and life changed even more than it had with the shunt stuff…

COLLEGE

At 19, my semester at college, I had an emergency brain surgery that left me paralyzed on the left side. Something had gone wrong and the shunt catheter had ended up in the grey matter instead of in my ventricles. I went through weeks of PT to regain movement in my left arm and leg. That all happened in October, by November I was using a walker and by December was walking with a cane in public and unaided at home. I was given the okay to drive again and life continued.
I was still pursuing a degree in nursing, working on fine muscle movements in PT trying to regain what I had lost. Then in 2009 while working a summer job as a CNA/caregiver I began having issues with back pain, I went to see my Neurosurgeon and it was decided that the lumbar shunt I had gotten as a teen should be removed because I was draining too much spinal fluid thus my brain didn’t have enough cushion.

ANOTHER ROUND

It was decided that the LP shunt had to come out and that I would do better with just my VP shunt. Unfortunately the outpatient surgery turned into several days that ended in me getting two VP shunts. Then I got another infection in my spinal fluid that took forever to diagnose and get rid of. After almost four months the infection was gone and I had spent over a month all together in the hospital. After the end of 2009 my optic nerve had been damaged and my vision impaired for life.
At that point I withdrew from school to figure out how to deal with everything I had been through and was still going through.

TIME PASSES

There is more to the story but I will share that chapter later, for now here are some take-a-ways from my story.

Don’t let anyone tell you that you can’t do something.
Don’t let anyone stand in your way.
Follow your dreams and don’t give up.
You may be rerouted a couple times but you will get to where you are meant to be.

Part 2 of this story is coming soon…