Chiari Institute Part 5- Surgical appointment

About a week ago, I had my appointment at the Chiari Institute with the Surgeon. Dr. Bolgonese was fabulous and sat with us for more than an hour to explain everything, including all the factors they are looking at in determining what the best plan of action is.

The gist of what I walked away with is:
1. They want to do a spinal tap in order to 100% rule out MS. This is to cover all there bases because one of my original doctors had said MS is still a possibility. So he feels the responsibility to rule that out despite possible complications with chiari and spinal taps. MS is normally ruled out by an MRI, which they did for me. However, there is less than 5% of MS patients who have MS but it does not show on the MRI. In these cases the only way to rule out MS is through a spinal tap. Unfortunately so far the soonest I have been able to schedule my spinal tap is Dec 27th which again postpones the surgery. I am still working on trying to get it sooner but have not found anything yet.

2. He and 3 other doctors are going to go over my case once more to come up with a consensus as to the best option for surgery. This is a way of double and triple checking as well as providing safety. I really appreciate knowing that they go to such extents to make sure they are doing what is best for me.

So right now the dilemma is to confirm 100% that MS is not a factor which the doctor feels confident is not an issue. The second dilemma is which surgical option is the best. There is one surgical procedure that would be less invasive and require a very short recovery process to attempt to fix the problem. But unfortunately people who have this can 6 months or a year later have the symptoms back and end up with the more invasive surgery. As much as I would prefer to have the less invasive surgery and get relief, I worry that I will be one of the many who has to end up having the second original surgery which means a longer delay and more money.

Right now, I have to trust God to guide the doctors to the best possible outcome. I am asking Him to give me a peace and prepare me for whatever the 4 doctors determine is the best option for me. I had peace about the brain surgery, and felt ready to take on the challenge. However, this new factor is a little tougher for me to handle. I want to be done with all this, the pain and lack of being able to do my normal routines. I miss running, and being active. It is very tough for me to be forced to slow down and take the lounging around that I often have to do because of the fatigue and pain. I feel lazy.

My mom taught me how to knit this summer which is helping keep me busy. Before being sick I thought I would never settle down enough to be able to knit. Now, it is something I can do to keep my mind busy and feel like I am accomplishing something. I have knitted hats, scarves, and now I am working on 2 purses. I will post some pictures of my work soon.

Despite my frustrations, God is ever faithful. I wish I could recount all the ways He has shown Himself faithful on a daily basis. Today in my devotional I read a story that impacted me and I hope it encourages you.

I Thessalonians 5:14
We urge you, brethren, admonish the unruly, encourage the fainthearted, help the weak, be patient with everyone.

The Weak and The Afflicted

During a visit to an East Africa hospital, I met a 10-year-old boy, Joseph, who is severely disfigured. A nurse explained that when Joseph was an infant his mother set him on fire. Though he miraculously survived, his left leg was burned to a mere stub. His right is permanently bent backwards, with webbed toes that were heavily damaged by the flames. Joseph’s left hand is missing two fingers, and, despite multiple operations, his wrist bone protrudes from the skin.

I held Joseph as the nurse changed his bandages, and was amazed when he confidently said to me, “The Lord’s going to make me well!”

I believe Joseph is right. Though I don’t know when or how God will bring healing to the child, I trust Isaiah who prophesied that one day the Lord will come, “and when He comes, He will open the eyes of the blind and unplug the ears of the deaf. The lame will leap like a deer, and those who cannot speak will sing for joy!” (Isaiah 35:5-6).

But for now, we live in an age where homes and communities around the world contain broken, hurting people. These individuals, like Joseph, are in dire need of our love and care. The apostle Paul told God’s people to “take tender care of those who are weak” (1 Th. 5:14).

His words echo the words of King Solomon in Psalm 72 as he implored God’s people to: • Judge others in a right and righteous way (v.2). • Let the poor always be treated fairly (v.2). • Defend the poor and afflicted (v.4). • Rescue the children of the needy (v.4). What can you do today to be a blessing to a physically impaired person in your community? —Roxanne Robbins

Chiari update!

Friday is my big appointment with the surgeon. From here I am expecting that there will be a plan and date for surgery finally. It is difficult to think of much else. I have had a few weeks of feeling OK and I think I attribute it to a medicine they tried. However, the medicine took a few weeks to get to the full dose and by time I got there I had trouble with my heart rate going as high as 120. I was short of breath just walking a few steps, my muscles felt so extremely fatigued that I could barely hold my arm up to write my name on the white board in patient rooms at work. They did an EKG and said everything was fine but that I needed to come off the medicine. The medicine helped some with the pain and headaches and gave me a ton of energy. Now that I am fully off of it as I Sunday, I have crashed. I barely stayed awake for work today and I am ready to go to bed at 8pm. I am looking forward to being done with all this.

Lord, may you guide each and every step that I will find ultimate healing but most importantly Lord that I will draw closer to you. You have changed me through these circumstances and I would not trade the experience for anything, for that reason alone! Thank you for your peace that passes all understanding and fills my heart.

The crew and our Corn Maze adventure!

Last Saturday, a group of us from church decided to take a small group to a corn maze in Western NJ. The Corn maze was divided into sections by colored ribbon and in each section we had a few sketches to color, and questions to answer. Our job was to figure out how many in each color section, and then to find them. Then once all were found, we made the task of figuring out our exit. It took us over 3 hours to complete, but it was a lot of fun!

The map at the beginning of the Journey!!!!

And the crew starts out fresh, and ready for the challenge!!!!

The farm in Chester, NJ boasts a 10 acre life size maze! Chester is in Western NJ about 45min from where we live. It is a gorgeous area...I could see myself living out there on a farm.

Yeah!!!! We found our first station in the corn maze. We could have just found our way through the maze to the end but we decided to take the challenge of finding all the stations along the way. Each one either had sketch we colored in or questions we answered.

Random wood bridges raised us above the corn maze but it never really gave us much clue to where to go. Sometimes it helped thought to gain some perspective, like we are in the middle, the edge, ect)

The big debate....Which way should we go? Standing atop the bridge we attempted to decide what our best plan of action was. As a group we had to agree to move on...

Ricky who stole my camera to take a picture of himself! He is known for being a bit crazy!

My very good friend Lisa! We often hang out and have dog play dates! Love this girl!!

Ricky and Russ (Lisa's Husband). Enjoying the challenge.

Annette (Ricky's wife), Lisa, and I posing while on a break in the corn maze!

German proud of this find.
We finally found a station that had eluded us for much of the maze!

Pastor Tim boasting about our toughest challenge yet. We managed to walk right by this station (which was at the very beginning) and had to back track a good distance of the maze to find it again.

Ricky falling to his knees in relief as we found the last station! He had gone around a corner and started yelling "I Win, I win!" First off this is a team thing, haha and second off he had become known as the boy who cried wolf so at first none of us listened to him. We were all getting tired and hungry by this point and once we realized he REALLY did find the last station we were so relieved.

Stephanie, myself, and Lisa at the end of the corn maze!

(Left to Right: front row: German, Pastor Tim, Michelle, myself, Stephanie
Back Row: Lisa, Russ, Jonathon, Ricky, Annette)
The entire crew...WE MADE IT!!

Following the corn maze we ventured off to Houlighans for dinner and fellowship before ending the night at Pastor Tim and Michelle's house for coffee and desert. It was a long day but so good to spend it with friends and a definite break from the challenges of daily life. I was really glad I felt well enough to make the adventure....It was well worth the fatigue.

Fellow chiari Commrad

This week I had the opportunity to meet up with a nurse from my hospital who had Chiari Surgery in 2006 by the same surgeon as I am going to be having surgery with (Her mom also had the surgery in 2004). It was a great opportunity to share stories and get a feeling for what to expect. It was great to have someone who has been through exactly what I have been through. She had chosen to put off her surgery out of fear and uncertainty and that was her greatest regret. Because of putting it off she said she got worse and said that some of her symptoms were irreversible. Her greatest piece of advice to me was to get the surgery done as soon as possible and that it was well worth the difficult recovery.

God is so good! Providing just what we need when we need it. I loved the confirmation this was for me and the encouragement I got from this time I had in this meeting.

Chiari institute Part 4

After what seemed like a life time, I had my appointment at The Chiari Institute! I met with the neurologist again for a follow-up visit. The medicine they tried helped only a little but the side effects were too much for me to deal with. The decision was to send me to the surgeon at the end of October to pursue surgery. Surgery is really the only treatment for Chiari anyway and was what we figured would be the direction we would be going in the long run. The doctors at the Chiari institute wanted to do their due diligence and make sure that what I had was true Chiari, which is a herniation of the brain and a narrowing of the base of the skull. You can have a herniation of the brain for other reasons besides Chiari. So the past few months they have run a series of tests to rule all this out and have come to the conclusion that I have a true Chiari herniation.

Many people would say, well you seem normal, why would you change what is fine? I am not fine. I have some good days but most days I am not fine. I have serious fatigue. I don't sleep through the night and have a difficult time working an 8 or 10 hour day. If I could go out on disability now I would but I can't afford to do so. I often work and come home and do nothing more. I have chronic pain in my joints and muscles. I have headaches that start at the base of my skull that don't compare to your everyday headache. When they are severe, I can't lay down because it feels as though someone is hitting me with bricks. The headaches are caused by a build up of pressure in the brain due to the fluid being blocked and not allowed to flow freely. Some days the pain in my legs are so bad I crawl up my stairs. I have weakness in my legs and arms especially the right side. I often stumble and trip because my leg doesn't work. My memory is effected, my bladder is effected...and i could go on and on and on.

The next step is to meet with the surgeon on Oct 29th. From their they say they may do one more procedure and then schedule surgery. Surgery is the process of opening up the back of the skull and the brain to release the pressure on the brain and take pressure off the nerves. It is much more detailed than this and is a 9 hour surgery and a long recovery. I am trusting the Lord to provide for the finances and the timing of every detail of this surgery. Please pray for the doctors and their hands as they do such a delicate surgery. Thank you to all who have sent me notes of love and encouragement through this time. I feel so blessed even in a time of difficult challenge. I truly can say I have such an incredible peace about the whole thing. It is a peace that passes all understanding...one that could only come from God.

"The Lord is my Shepherd I shall not Want. He makes me lie down in green pastures, He leads me besides quiet waters, He restores my soul. He guides my paths of righteousness for His names sake." Psalm 23

Thoughts....

With my appointment at the Chiari institute being less than a week away now, I have a lot on my mind. I feel a bit of apprehension at the thought of this upcoming appointment. The blessing of having Chiari malformation vs Multiple Sclerosis is the fact that chiari is fixable and MS is not. However, there is a sense of nervousness as I realize that these doctors have the final decision in there hands. Part of my nerves come from a worry that they may delay the decision again which I am not sure I could take. However, I guess I would rather that instead of them saying no.

After taking a bad fall this week because I am having problems with my right leg not always listening to what my mind tells it to do, I am annoyed by the frustrating and increasing symptoms. However, even though I want to have the surgery and therefore the possibility of relief I sense God is calling me to a difficult decision. I feel as though He is not preparing me for a no or a yes but to come to a place where I am willing to accept whatever happens. I don't feel this is a place of giving up really but in reality a surrendering to God and His will for my life. I am not giving up the fight by any means because either way I will be in a fight. Either a fight to maintain as normal a life as I can with the symptoms I have or a fight to recover from a major surgery. Either way I am in for a fight but that fight becomes that much easier when it is one I am fighting with God.

I am a very independent person and for so long I thought "I don't need any ones help, I can do it myself." But that attitude doesn't help in the long run. I have been learning to surrender things to God and trust in His will for my life. I have found that the road is much smoother that way. This situation is no different and as I can fully trust God with this I will have the peace to deal with whatever comes! I continue to pray for healing, and if necessary for the surgery that can bring healing. But I am learning to rest the situation in God's hands and trust His will for me and His plan.

"My grace is sufficient for you, for My strength is made perfect in weakness. Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities in reproaches, in needs, in persecutions, in distresses, for Christ's sake. For when I am weak, then I am strong." 2 Corinthians 12:9-10

More drama

Today was a beautiful 80 degree day and I made plans to drive to the shore and meet my friend Carmen for a nice day on the beach. About 15 minutes away on Hwy 33 I was driving and pulled over immediately when a young boy who tried to cross the highway was hit by a car at 45 or 50mph. The boy was in critical condition. Myself and a medic cared for the boy while we waited for police and medics to arrive. When they arrived I helped them load the boy onto the board and breathed for him while they secured him to the board. The young man was not responsive and had a very faint pulse. He was bleeding from the head and probably dealing with many broken bones. By God's grace he was hit 2 blocks away from a major trauma hospital. Many areas you would have to be transported a ways just to get to a hospital that could care for such injuries. Tonight, I am saddened by what I saw but praying that God has taken care of him and given strength to his family. I also pray for the driver who must be traumatized by the entire situation.

Please pray for this young man and his family. I may never know the outcome till I reach heaven but none the less I know that God hears our prayers!

Chiari Institute part 3

I am a week and a half away from my next appointment at the Chiari institute. In the mean time I have two more tests to finish and then really hoping for a final decision at this appointment. Meds have not worked and I am ready to finally put this issue to rest if at all possible. This time last year I was training for a marathon and now there are days I am crawling up my stairs to my second floor apartment. God has been faithful on a daily basis giving me the strength to get through each day and to maintain working. I look forward to seeing his continual provisions in this area of my life.

Chiari institute Part 2

I have not yet returned to the chiari institute for the second time but I am a little over a month into my 2 month attempt at trying some medicine they were hoping would help the headaches. The goal was to get it to 750mg and I made it to 500mg. It helped the headaches some but not so significantly that the side effects (dizziness, lightheadedness, needles in hands and feet, change of taste, and nausea) were worth suffering through. I gave it a good 5 week trial and really had a tough time with the side effects.

This weekend was one of my more difficult in a while. I had a headache Saturday while at a bbq that really wreaked havoc on me. Even my dilauded (strong pain med) was not enough to touch the pain. Prior to this I was really blessed with one of my first reprieves in a long time. A week of no headaches, decent energy, and significantly less pain. It was a reminder of how it feels to feel good. Without that short reprieve I don't know where I would be as I was getting to my limit. I'm not sure what my limit looks like or how I would act but it is tough to work day in and day out with this. I am too much of a fighter to let this get the best of me but I guess even the best fighters have their down moments.

I have one more specialist appointment next week and then I will return to the Chiari institute Sept 22nd. By God's grace I will get some answers this next go around.

Psalm 113
¹Praise the LORD!
Praise, O servants of the LORD,
Praise the name of the LORD.
Blessed be the name of the LORD
From this time forth and forever.
From the rising of the sun to its setting
The name of the LORD is to be praised.
The LORD is high above all nations;
His glory is above the heavens.
Who is like the LORD our God,
Who is enthroned on high,
Who humbles Himself to behold
The things that are in heaven and in the earth?
He raises the poor from the dust
And lifts the needy from the ash heap,
To make them sit with princes,
With the princes of His people.
He makes the barren woman abide in the house
As a joyful mother of children.
Praise the LORD!

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.