The Chiari Institute Part 1

On Tuesday I went to the Chiari institute for my initial consult. My friend Carmen came with me as a support which was a great blessing. When we got there we waited about an hour before we finally met with a nurse. This particular nurse is the nurse who is assigned to oversee my case. She had me fill out paper work and went over my history for an hour. When she finished she had us wait in the lobby while she presented my case to the neurologist. Once we got in with the doctor we spent more than 4-5 hours with him and did not finally get out of there till 7pm. That is a total of 7 hours.

The doctor was very thorough in his exam and history taking. In the end I realized what seemed like would be a given, I would have surgery, turned into a much more complicated situation. First off he has confirmed that I have a connective tissue disorder called Ehlors Danlos syndrome. This condition makes having the surgery to fix the Chiari much more complicated. On top of that they believe that I have a condition called tethered cord syndrome which prevent the spinal cord from moving freely. This means that if I have tethered cord I will need a surgery to fix it. This means a few days in the hospital and a short recovery. However, that still leaves the debate of whether surgery for my Chiari is the best option. Currently I am having more tests and then will meet up with the doctor again in 2 months to reevaluate and hopefully come to some sort of conclusion.

The appointment was encouraging because I finally found someone who knows what they are doing and understands what I am dealing with. Most days are a challenge now to just get through. I am still working but often can't do anything more than that. However, the discouraging aspect is that I may have to come to a point where I must accept that things wont improve. I am trying not to think about that part just yet. I am trying to focus on the hope that there is a treatment and that maybe I can be treated and move on.

Recently I returned to a Psalm that has often given me hope out of the Bible.
Psalm 121:

I lift up my eyes to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The LORD watches over you
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore.

The Japanese Gardens

We took a few hours to walk through a beautiful Japanese Garden. The Garden was green and very peaceful. I felt like I could spend hours here in the presence of incredible beauty.

Me at the entrance of the garden!

Aunt Sheila and Uncle Pat

Enjoying some rest

Hot Chocolate in July...San Francisco is not very warm especially when you just came from New Jersey where it had been upper 90's and humid.

A fun Bridge!!!!

Kite Flying in San Francisco

While we were at the beach in San Francisco we had the opportunity to watch some professional kite flyer's. Each of these rows of triangles is a different kite controlled by a different man. Then men would rotate around each other moving there arms in different ways to cause them to rotate around one another in a spectacular show. It was very impressive and something I have never seen before.

The San Francisco Ocean

While in San Francisco we stopped by the ocean which was an amazing site. I miss the West coast ocean. It is such a rustic beauty.

This was apart of an indoor swim hole that they used to swim in. There were pools for women and pools for men. They wore swimsuits made of wool. Kind of a scratchy swimsuit.

This looks like a Jersey sign....blunt and too the point.

An old time windmill right off the ocean.

Uncle Pat enjoying the view of the Ocean from our dinner table.

A view of San Francisco from Twin Peaks

This is a view of San Francisco from twin peaks above the city.

A day in San Francisco

I took a week to travel to the West coast to visit family and friends. I flew into the Bay area where I spent 2 days with my Aunt and Uncle. This is a big park in the heart of San Francisco where they have rose gardens, museums, and small parks.

A family of Turtles hanging out on the rock.

A Road block but not a wall!

I have faced many road blocks in my life. I see them as a challenge that I must face and which only makes me a stronger and better person. In January some physical symptoms I had for the past two years had escalated to a point I felt I needed to follow up with them. The doctor I had was very concerned and sent me to both a Rheumatologist and a Neurologist. After some blood work and a thorough MRI they found that I did not have M.S. as they had been concerned about but instead found I have a rare condition called Chiari Malformation I.

Chiari is a condition in which the cerebellar tonsils of the brain have herniated through the hole at the base of the skull where only the spinal cord should be. This particular condition they believe is something you are born with. In the kind I have symptoms often do not present problems till your 30's. It often mimics M.S, Chronic Fatigue, and Fibromyalgia which I have been misdiagnosed with over the past few years. The only treatment for this condition is surgery. I was diagnosed in April and am slowly working through the process with doctors to determine what is the best step for me. It is a major surgery which I would absolutely love to avoid but medications are not working to control the pain, headaches, weakness, fatigue and other symptoms.

July 2oth I will be being seen at the Chiari Institute out on Long Island where they specialize in the treatment of this condition. In preparation for this appointment they have sent me for multiple Xrays, MRI's, and CT scans. Based on what they see and the thorough 2 hour evaluation they will determine what the next step is for me.

For me, finding out I have Chiari is in a weird sort of way a relief. I have had many, what seemed like, random symptoms and no one could put a finger on the cause or the best way to treat this. When they thought it was M.S. I was very nervous because I know that there is no cure for that. When I read the symptoms for Chiari it was a perfect match and the fact that there is a treatment is also a blessing. The only concern is whether there has been permanent damage to the nerves which may mean I wont have complete relief of the symptoms. However, I am being diagnosed much earlier than the average person so we feel that the likelihood of that along with the ebbing and flowing of symptoms means that the nerves have not been permanently damaged.

As challenging as this has been, I have been blessed with a God who promises that He will never leave us or forsake us...even in the most difficult situations. I see this as an opportunity to grow and learn. I have also been blessed with a great church who has surrounded me with love and support through this hole process. I don't know the outcome but I know that I will be OK in the end.

Fourth of July

Today after church I went to my friend's Lisa and Russel's house for a BBQ and fireworks. It was a new group of people than I usually hang out with but it was a very solid and encouraging group. Today was 97 degrees but thank God the humidity was low so we just hung out by the pool and relaxed. Then we went to the town fireworks to end the night.

In NJ personal fireworks are illegal. So instead most towns put on a firework show. Not all towns do it on the 4th. Here you could go to a different town each night and get a firework show for a week. I enjoy this concept because then you aren't listening to the neighbors run fireworks all night long. Besides its neat how entire communities come out and spend a little time together.

Fourth of July is such a blessing because we are able to celebrate our freedom because of the service men and woman who have sacrificed for us. Thank you to our veterans and current soldiers for all they sacrifice for our country.

BBQ

Today I went to a BBQ at one of our pastors' houses. There was a ton of people throughout the day. It was such a beautiful day though a bit hot at 90 degrees. Between the good bbq and the fellowship I had a blast.

I learned a new game, I believe it's called the tailgate toss. It's kind of like horse shoe except you have 5 bean bags and you have to toss them at a slanted board with a hole in it. If you get it in the hole you get 3 points, on the board is 1 point and if it doesn't land on it then you get no points. You are competing against someone else. This was quite the game for my competitive nature. I must say I am addicted.

I am so blessed by the friends and the church I have here in NJ. I really thought I would come, attend school, and move. However, I must say, I am so connected now that it would be tough for me to leave. God has been good to me!