Tuesday, January 22, 2013

My surgery time changed to 12:30 tomorrow. At least now I won't be leaving home at 2 a.m., However, I kinda liked getting it done first thing in the morning. Now I have more time to think...
Thank you all again for the well wishes and for the continuing prayers.  Please pray for Bob's family as well, his sweet mother's funeral is tomorrow in Tampa.
Thanks everyone!
Okay..surgery time is set for 0745 in the morning. I have to be at the hospital at 0530..I'm Dr. Kim's first surgery. My sweet puppies are safely at  Aunt Linda's, Mom is here, and I'm close to being packed.  I've had so many prayers and well wishes today, It's almost as if I can feel the prayers. I've been relatively calm, not too emotional. Stefanie came by for a few minutes of comic relief, she's great at making me laugh.
So..I may or may not post again..right now I'm making soup with my mom, gonna make a list, check it twice...and try to get some sleep tonight.
So the countdown begins..the final packing for the hospital, sending the dogs away to Aunt Linda's..making sure I haven't forgotten anything. Yesterday was good. Tami drove to Houston, so we talked the whole way, got lost, then got home without a hitch..and made very good time. The pre-op appt. went well, labs were drawn and instructions given. It's funny to be on the opposite side of the pre-op process..NPO times, etc. It's really odd being in a hospital setting as a patient rather than a nurse.
I've gotten so many kind emails, texts, guestbook postings, FB posts, etc. I am just amazed that so many people are praying not only for me, but for my surgeon and his staff.  I've been very anxious, however, now a nice calm seems to be flowing over me. I know it's prayer, I know it's God wrapping me in His love and me giving up myself and leaning on Him. 
I will likely post an update on surgery time when I get it..then the next posts will come from Bob or Kelly as updates.
Thank you all so much for your love, support, and most of all, your prayers.
And Megan...I remember: "Shower & Eat, Shower & Eat, Shower & Eat..and get off the morphine"...LOL!! 

Thursday, January 17, 2013

Sydneys Chiari Malformation 1 Story

Chiari Gets National Exposure on the Jeff Probst Show


Wednesday, January 16, 2013

The Saga continues....

I've been a busy girl. I have so much to do..and 14 days left to get it all done. However, today, I fear I will accomplish very little. I can't move.  No, I'm not paralyzed..or in dire pain.  I just don't want to move. I'm in bed with my laptop, a book, hot tea and the kids (dogs). It's cold out..and I just want a day..or a few hours to do nothing. I have crazy tinnitus (ringing in the ears)..I mean..it's so loud I can hear very little over it. I can barely think.

I have to rework my living will and my will and make them legal. This is very odd and a bit unnerving. I just paid my deposit to my NS office..$1250..and paid off my wedding dress with the final $500. It's so odd to plan a wedding and consider my final wishes in the same day. Every day seems to be a sharp contrast of emotions like that. It's very surreal.

I've been aching on the inside lately for relationships that I cannot mend. Not that I haven't tried. I've finally come to a point of piece with a few of them. Last night I dreamed that my ex-husband came and apologized, not that our relationship will ever be restored. He is happily remarried and I am happily engaged to my wonderful Bob. However, the apology..or even just burying the hatchet would be quite healing.  In my dream he apologized and just after, Susan called. In the phone call there was no apology, but their was a peace that said.."We're okay."  I don't know why I am allowing myself to hurt so over these relationships. I am totally out of control. I've apologized, asked forgiveness and said I'm sorry. Now I just have to let them go. The saddest part of divorce is that so many people feel like they have to choose sides. When you spend twenty years as part of a family, then you opt out..for whatever reason..sides don't have to be taken. Yet they are. Well meaning, God fearing, gospel proclaiming people still choose sides. Don't we serve the same God. What His Word taught me is that it is MY responsibility to live at peace with everyone. 

I've found that one of my great character flaws is that I hold on too long. It's almost as if I'm addicted to harsh or rude treatment, and no matter what my brain says.....my heart hurts. I've asked God almost daily to help me let these people go and to soothe the ache. Some minutes I'm stronger..other minutes I'm weaker....but it is getting easier. I believe it's just the resolve that comes from knowing I have done my part to apologize and to live at piece. I need positive thoughts and energy around me.

I was on chiarisupport.org yesterday, and on the Colorado for Chiari FB page...on both of these there were posts from people about to have surgery going through the same fluctuating emotions. I feel more normal. I can not stress how much support I've gained from fellow Chiarians. Support pages, message boards, blogs and websites truly make the difference in my life daily. Being understood is priceless, knowing I've helped someone else..soothing to the soul.

I guess I'm saying all of this to just say I'm so grateful. I've had disappointments and broken relationships...and trust me..they hurt..yet, the new friends and contacts and support systems I've found are wonderful..it's an entirely different level of connection and I could not feel more blessed for these new people in my life.

SO, for now..I'll just sit here in my bed, with my tea and my kids..and I'll visit with my new friends and remind myself how truly blessed I really am.
I was called off work today. I will miss the pay, but welcome the extra time at home. My ears are ringing still, so loudly I can barely think..it's so weird how the random symptoms come and go. Yesterday was really good. My ears were ringing, but I was not extremely dizzy and had a minimal headache..I was able to get several wedding tasks accomplished and felt great about my progress. Then, during dinner..it all hit me at once, headache increased, nausea, dizziness..I was instantly emotional, panicky..crying. There was no reason, we were just eating dinner and talking.  I had the feeling I can only explain as an odd, bad feeling. I get it frequently..and all I can say about it is when I get it I feel so bad all over. I've seen "odd feeling" on symptom lists and wonder if this is the same as what I experience.  
January 15, 2012
I successfully completed my day at work yesterday. Once again, I couldn't be more thankful for my manager and my co-workers. Everyone has been wonderful. Well, most everyone. I did have a small issue that really just cut into my heart.You know that moment when you realize that someone really isn't who you thought they were..and their well-seeming intentions aren't that well-seeming? Well, that happened. Normally, this wouldn't be a big deal. I'm just a little emotionally raw..so I did momentarily shed some tears. I was able to pull myself together and get through the rest of the day with no more issues. Patient load wasn't too heavy and the day just worked out. Bob and I met for dinner at Legacy Cafe (our first visit there) in downtown Waco (just a few blocks from home). We had a very lovely, pleasant dinner, prepared for us by the owner, we went home and straight to bed. Overall it was a very pleasant, wonderful day. The new headache meds seem to be working some..and I've slept really well the past two nights. It's nice to wake up feeling rested for a change.
January 11, 2013

I am an emotional wreck. I cry and can not control myself. I cried today on the phone with Everly (the magician that makes my hair presentable). A few hours after I got off the phone with her..I start laughing at myself..its JUST HAIR! I cried in my manager's office yesterday. I cried on the phone with my mom this morning. I cried picking out wedding invitations. I cried sitting on my sofa just talking to Stefanie. I cried because I couldn't decide what I wanted to eat. I cried on the phone with the hospital making payment arrangements. I cried talking to Bob's step-mom on the phone. And it's not like I'm in deep emotional conversations...I'm just a sap right now. I can't wait for Grey's Anatomy to come on tonight so I can cry some more! There was a time not too long ago when I thought I was all cried out. Just a few months ago I felt normal and balanced. I used to always tell people that we like to feel in control..but control is an illusion. I meant that when I said it. I mean it sounds very philosophical. However, I have come to realize that I didn't really believe it. I really believe it now. God is in control. My hope and trust is in Him.
 Jan 10, 2013 
Finally the nausea is easing...after my fiasco at work yesterday, I decided to stay home and drink ginger ale today. I am repeatedly thankful for my co-workers and manager. I have to admit I am tired of being the "sick" person. However, they have all been great and very understanding.
Finally my insurance company and the hospital communicated properly yesterday. So, my hospital stay is now covered at 80% (as opposed to the incorrectly quoted 50%). Dr. Kim is still only covered at 50%...and I am thankful that his staff is very easy to work with about expenses.
We have been very concerned about Bob's mom for the past few weeks. Her health is declining rapidly. I would appreciate your prayers for Bob and his sisters as we now think she may only be with us for a few more days..or maybe even hours. Hospice is being called in today.
Thank you again for the continuous prayers and well wishes. I appreciate everyone's concern.
Written Jan 9, 2013 8:15pm by Michele Robinson (Duffey)
SO very glad to be safely back home where things are quite and still. Although I was awake most all night with violent nausea, I felt okay at 5 a.m. so went to work. Things were relatively okay, I mean, the usual dizziness and balance problems, but then around 1:20 the nausea came back with a vengeance. At the bedside of a patient, I became very ill. Ultimately, I ended up in tears in my manager's office, totally unable to control myself. Where does this come from? it's like everyday a new drama. How does Bob handle all of this? Why can I not handle it? I just need everything and everyone to be very very still. Still is good. So now I am home..and I am still....and I am good.
January 8, 2013

Day 2 of horrible headache and nausea. No meds or comfort measures are working this time.I'm so dizzy and just all around feel yucky. I'm going back to a totally dark room for awhile. I have a meeting with my stationer at 11 and with the bakery at 1. I really need to be in the tolerable pain level or will have to cancel both appointments. Not to mention I have work tomorrow.
Also, I should find out today if Dr. Kim will move my surgery up to the 23rd. I'm certain that whenever it falls is th day God wants me in that OR.
Thank you for your concern.
January 7, 2013

Yesterday's headache continues with a vengence. I'm so glad to be off today to rest my eyes, ears and body. However, I have so much to do, I just lay here and think of all the things not getting done. 23 days until surgery..I work 9 of those days..so I have 14 days to get everything done that needs to be done. My precious mom is coming out the week after surgery to help at home. It's upsetting that surgery is so far away from my loved ones. I'm concerned about Bob being alone at the hospital with me. Of course, he says he will be fine. That's a man for you...He is so kind and loving, ever confident and positive. I'm so grateful for him, and at the same time so sad that this is hitting us right now. We are getting married on April 13, 2013..that will be 10 weeks post op. So you see, that 14 day timeframe doesn't allow for headaches like the one I have today. I have plans to make, things to do, people to see.
For now, I'm going to turn the lights back off, rest my eyes, clear my head and ease this headache. Thank you for checking in on me. Have a blessed day!
Written Jan 6, 2013 2:19pm by Michele Robinson (Duffey)
So again..here I am at work. It's been a crazy day of surgeries. I'm here alone..and ready to go home. I woke up with the typical headache, I've only been really dizzy 4 or 5 times..tripped once..but no falls..So all is well.
I've been really touched by the messages in my guestbook. I appreciate the posts and know I will enjoy re-reading them in the coming weeks. Thanks so very much. I love each of you too. True friends are priceless.
I'm really struggling with dropping my classes this semester. I actually re-enrolled for one of them today..I'm thinking..surely I can take just one. Then the other part of me thinks...do what the dr. said, take no classes..spend the time recovering and making wedding plans. But is that the easy way out? Is there an easy way out?
I don't know. What I do know today is this: I have fabulous friends from all over that I am very grateful for, I miss my children immensely, and at the end of the day, I'm glad to go home to a house filled with peace and love. I am blessed.
I pray you are blessed today as well.
Written Jan 5, 2013 1:43pm by Michele Robinson (Duffey)
So, today I'm at work. We rotate weekends. It's my turn..so here I am for a long day alone. I was on the phone with Dr. Kim's office earlier..getting the financial breakdown. This brain problem is quite pricey...My insurance only pays Dr. Kim's fee at 50%..Insurance is great at times. Other times...well, other times are just other times. Thankfully, the hospital fee is covered at 80%.
His office staff..a sweet young girll named Kristen, was kind enough to remind me that this only covers the procedures Dr. Kim sees necessary so far. She went on to tell me of other procedures that commonly arise in people with Chiari, Arachnoid Cysts and EDS. Not exactly what I wanted to hear, but I guess I'd rather have all cards on the table and know exactly what could happen.
She laughed at me a few times because I said the wrong thing..like I said "Isabel" when I meant to say "Dr. Kim". She said.."I hear it all the time..all of the Chiari patients do that". I wish I could hang out with more Chiari patients. I think I would feel a little more normal.
I've purposed to pray for Kristen daily. What a job she has..calling patients..ALL of whom are facing brain surgery for a vast array of things. We are all anxious about finances and anxious about surgery. She is very calm, kind and patient. I met her in the office, she appears to be about 24-25 yrs old. Very mature and comforting in her mannerisms. If you think of it, pray for Kristen, I'm sure there are many days she needs it.
January 4, 2013

What is Chiari?

Written Jan 4, 2013 7:33am by Michele Robinson (Duffey)
So maybe you are wondering...What is Chiari anyway?
When I first heard of it..I racked my brain for some trace of information from nursing school..but came up with no answer.
A quick Google search revealed the answer. Chiari Malformation Type 1 (There are 4 Types) is a congenital malformation of the posterior fossa. Basically, the back of the head is crowding the brain. This crowding forces the cerebellular tonsils (at the base of the cerebellum) to herniate into the spinal column. When this happens, the cerebellum acts as a cork, decreasing the flow of spinal fluid. The opening to the spinal cord mostly affected is the foramen magnum. Ten of the twelve cranial nerves originate in the foramen magnum...thus the vast array of symptoms.

In my case, there is also an arachnoid cyst present on top of the cerebellum, so my brain is being pushed down and forward, and my brain stem is bent forward. My pituitary gland is flattened. Everything is very squished together.

One fellow Chiarian stated that her surgeon told her that when he decompressed, that is..he cut the piece of her skulll out and then cut into the lining of the brain that her cerebellum popped like a can of biscuits opening..that's alot of pressure.

I was born with this. 98% of all Chiari patients are born with this, however, there are a few disorders that can cause non-congenital Chiari, such as pseudo tumor cerebri (where there is an over abundant production of cerebrospinal fluid.) or traumatic brain injuries.

Chiairi is most frequently diagnosed in the adolescent years or between ages 21-73. One of the main problems in diagnosis is that people with Chiari accept so many abnormal things as normal, so we don't seek treatment. I've discovered in past months that the following are not normal:
Head throbbing upon standing up-
Head pounding with exercise-
Constant tightness in head, neck and shoulders
Ability to hear my heartbeat all the time
Swishing sound in ears
Almost continual ringing in the ears
Trouble with word finding (I say the wrong word when thinking the right word)
Short term memory loss.

Other symptoms I knew weren't normal:
Ridiculous headaches
Occasional choking on my own saliva--
Left/arm & leg pain numbness, tingling
Body parts "falling asleep" easily
burning in fingertips
Crazy dizziness-
blurred, darkened vision
nipple discharge (I actually had surgery for this 11 years ago..no one linked it to my pituitary gland being flat.)
tooth crumbling (I have pins in all of my lower back teeth due to this...started at age 12)
Inability to perform simple calculations.

Currently-the worst issues are the headaches, dizziness, word finding, ---I deem these the worst because they are becoming daily obstacles to overcome. Although surgery most likely won't cure all of the symptoms, my prayer is for symptom alleviation so I can get back to a somewhat normal life.

I've posted a webinar from my neurosurgeon and an informational website on Chiari for further information.
 January 3, 2013

I had some wonderful conversations with people today and many well wishes and promises of prayer. My sweet friend Amy said, "I just want to put my arms around you"..I told her..and I'll tell all of you..your notes, texts, emails and FB messages are like hugs..and I can feel them here in central Texas.

January 3, 2013
Today I'm getting started..for a candid glimpse into my "constricted cranium" I will do my best to update symptoms and activities each day.

Yesterday I worked a 13 hr. shift at the hospital. Each day is a battle of balance and dizziness at work. I got through the day with only tripping once..however, my word finding was ridiculous..by 5 pm I could barely speak a legible sentence. This is so funny to me, and embarrassing. Thank goodness none of my co-workers say anything about it.. I'm thankful for two days off to rest.

I submitted short term disability claim forms and general medical leave claim forms last Friday. I contacted OU to take a semester hiatus from graduate school (Per doctor's order)..and I traded in my head-jarring Jeep Wrangler on a smoother riding older car. Doing all of these things is emotionally taxing..it's like admitting that Chiari controls my life. Reality check...it does.

I'm going to include posts from my CaringBridge site as I've spent more time on there lately:

Background Story:
Several months ago, an MRI revealed Chiari Malformation Type 1. This diagnosis not only explained the extreme bouts of dizziness, but also a lifetime of headaches, fatigue and memory problems. Basically, Chiari has hindered my health since birth. Now at age 44, symptoms have exacerbated making every day challenging. Symptoms have increased to include the following: continual headaches, almost constant dizziness, occasional vertigo, left arm/leg pain, weakness, and tingling, difficulty swallowing, trouble with word finding, peripheral vision loss, blurred vision, short term memory loss...and this list goes on.

After months of seeing doctors and specialists, there is finally a plan of treatment. On January 30, 2013, I will undergo a posterior fossa decompression, a brain surgery (craniectomy), in which my neurosurgeon, Dr. Dong Kim, will remove a piece of bone from my skull, and will cut an opening in the dura (lining) of my brain, relieving the pressure on my brain stem. A few weeks ago, Dr. Kim discovered an arachnoid cyst on my cerebellum, therefore, during the decompression he will perform a second procedure to fenestrate (poke holes in) the cyst, allowing the cerebrospinal fluid within to drain. Prayerfully, the fenestration will prevent a subsequent surgery to place a shunt.

I am blessed and fortunate to have many supportive loved ones and a very supportive group of co-workers. In my work as a pediatric peri-operative nurse at McLane's Children's Hospital in Temple, TX, I have been fortunate enough to meet many families with children undergoing this procedure and living their lives with Chiari Malformation Type 1. I see the importance of support and prayer during these difficult times. I ask that if you honor me by remembering me in prayer that you lift up also my loved ones, my work family and all individuals suffering from and affected by Chiari Malformation Type 1. This surgery is not a cure, it is one method of managing symptoms.

Chiari has no cure. It is often overlooked and misdiagnosed. Like myself, many people have had Chiari-related symptoms for years and have been told by many well-meaning physicians, friends and loved ones, "it's all in your head" (pun intended). It IS all in our heads..it is estimated that 3% of the population have Chiari Malformation Type 1. My desire is to increase awareness and provide information and support for my fellow Chiarians and their families. Living a life of feeling inadequate has had a severely detrimental effect on my life in many ways. A Chiari diagnosis provides validation...a moment of, "YES!!!--It's not just me...I'm not crazy!"..and then reality sets in..it is a lifelong disease..a foe that when unseen was to be endured, but now visible--to be conquered.

As for Chiari awareness--I wonder--What would happen if physicians connected the dots? In my lifetime I've had the following: adhesions (Left side of abdomen/colon), stress fractures (left foot, left tibial plateau), left clavicular lipomas, unexplained breast discharge, crumbling teeth, scoliosis--all requires surgeries, dental work, chiropractic visits.. No one ever connected the dots. Each of these can be related directly back to Chiari. Chiari was screaming inside of me..yet no one was listening..and I was ashamed, I felt like a financial burden and thought maybe I was crazy. I can trace my symptoms back to age 13. How many physicians failed to connect the dots in the past 31 years? At last count---18 different physicians have treated me and never even considered Chiari. This alone is a reason to increase awareness. In an effort to do this... I am working on a separate blog for Chiari Awareness, have started a Facebook page for awareness..and will be updating this site when those are available for viewing.

Thank you for reading, for praying and for any efforts you make to increase Chiari awareness.

Friday, January 4, 2013

Okay..enough for the holidays..back to work.

I'm becoming consumed with Chiari..Obsessed with Chiari Awareness...Treatment really shouldn't be THIS difficult or THIS expensive.

SO on with the tale...

Once upon a time there was a little girl with a big brain...
No..wait...that's not the story at all.
Let's go back a few months...

I get the call..
Nurse: "Ms. Robinson, Dr. Horner wanted me to call and tell you you have sheari malformation type 1 and he is going to send you to a neurologist. "
Me: "So I have SHEE ARE E?  How do you spell that and what is it? "
Nurse:"It's C-H-I-A-R-I..and I don't know what it is.. we will call you back with your neurology appointment. I'll call you back."

Me:  Mouth hanging open..quick Google while dialing Bob's number..
Me: "honey..I have SHEE are ee..its spelled CHIARI..Wait, I'll call you back..the Dr. is calling."
Bob: "Uh..okay"

Me: "Hello"
Nurse:  "Your appt is next week with Dr. H, they worked you in."
Me: "Okay, should I be concerned."
Nurse: "Dr. H will explain everything, don't worry."

Me: "Hey Honey, I have an appt for next week."
Bob: "I looked it up..it's pronounced KEE-ARE-EE. The only treatment is brain surgery."

So that was day one.
The days, weeks and months that led me to today have been exasperating. I've seen 2 neurologists, 3 neurosurgeons, 2 primary care physicians, 2 radiologists, 1 neurological ophthalmologist and 1 physical therapist.  I've been to Dallas, Denver and Houston. I've been told.."You were born with it..it's not the problem", "I can't do this lumbar puncture on you, it will kill you, I don't want to kill you on a Wednesday,",  "Dr. O hasn't had time to review your chart..although its been six weeks.", "we think you have a brain bleed, we need to transport you to the main hospital by ambulance"
and my favorite, "You don't look sick.."

I thank God for my wonderful primary care doctor who promised me to see me through this and told me to not give up until I found answers.

As I numbly read through symptoms on Day 1..I felt suddenly elated..VALIDATION. No..I was not lazy..and it wasn't all in my head...as my ex-husband stated one time, "no one can find anything REALLY wrong with you."  I thought perhaps I was a hypochondriac ...I thought that I was a misfit..
The only misfit here is the way my brain misfits my skull..

In weeks and months to come I will spill out my Chiari Tale in greater detail. Right now I have 26 days before surgery and have so much on my list to accomplish.  I now have a Caring Bridge site that I will link to this one and will plan to update both as time goes on. Also, I will be teaming up with the Chiari Warriors Foundation and adding my own informational site to FaceBook called The Constricted Cranium. My goal is to increase Chiari Awareness in the general public and in the health care world.  I can trace symptoms back to age 13 and have seen nearly 20 doctors since then..all who could have ordered a simple brain MRI had they been fully aware of the ways Chiari can present itself.  Thanks for reading..I'll meet you back here in the near future.