Operation Snow Removal

Tonight my mom and I were in the living room chatting when we heard what sounded like an army of trucks outside. When I looked outside this is what I saw:

Some of the photos are a little different because I was playing around with effects on my computer.


A large back how was plowing the street to clear old snow from our 60 inches of snow this year so far. It was then unloading it into a dump truck.

There was a line up of these dump trucks about 2 blocks long.

This is one of about 5 back hows that was clearing the street from all the snow from our previous storms.

Before my surgery I used to take Faith down to a parking lot at the end of the block to play Frisbee. At that time they had been dumping truck loads of snow in the parking lot to try and clear the streets because we have receive SO much snow there is no where to put it. Since then we have had another 2 storms. We had 30 inches of snow in a storm right after Christmas. In January alone we received another 30 or more inches of snow. So all that noise was the town of Bloomfield working meticulously to clear our roads of all this snow in preparation for another storm expected the next day.

Big step!

Today was a big day for me. It has been 10 days since the surgery and I have been up and around but only in the house. My friend Meredith came over this morning for a short time and we decided to take a very short walk outside. We took my walker outside and walked on the sidewalk to the corner which is about a quarter to half of a block. The walker helps me with the right side instability and as well it served to help in case there was a patch of ice.

We made it down and back with no problems. It felt so good to both be outside in the crisp, fresh air! When I walk I feel pretty good. My biggest problem is holding my neck up. They removed the muscles of my neck for the surgery and then put them back. So they are very tight and keep spasming. It helps when I support the neck by laying down or sitting in a supportive chair. Each day I am able to be up more but I can tell when I have done too much because there is a pulling and pressure in the neck area.

Berry Muffins

My roommate and I decided to try a new recipe over the weekend. I love to juice using my champion juicer. The taste of fresh juice made right then is so delicious. My favorite recipe is Apple, spinach, kiwi juice. It is a tasty, sweet apple flavor. the spinach adds a TON of nutrients without adding flavor.

So the juicer I use unfortunately kicks out a decent amount of pulp which I will often add into things to add fiber. Well we have talked about using it for muffins and this weekend we finally tried it making raspberry muffins.

This is our green pulp which we added all of our ingredients to. It looks gross but believe me it is not.

Here is the Recipe if you get adventurous:

4 cups pulp (they tell you of specific types of fruit but since it really doesn't have flavor we just used what we had.

1 cup olive oil

3 eggs

1 cup honey

3 cups whole grain flour

1tbsp baking soda

1 tsp of nutmeg (optional)

1 tsp of vanilla

1 cup of fresh or frozen berries of choice

Mix the pulp with the wet ingredients

Add the dry ingredients

Stir in the berries

Pour into muffin cups or greased muffin tins.

Bake for 45 min at 350 degrees

The finished product:

Now I know that the green might look unappealing but these were FANTASTIC! They tasted so moist and flavorful. Wish you could have tried a bite with us :-)

A month of snow.....

Since the weekend after Christmas We have had more than 60 inches of snow. Our first snowfall of the year was 30 inches right after Christmas. Last Wednesday we received 17 inches of snow and again this Tuesday we are looking forward to another potentially large storm. I personally love snow and especially here, it is fantastic because they are able to plow it and make the roads drivable.

(This is a picture of my mom throwing the frisbee for my dog in our snow covered drive.)

(Faith carrying the fris over a 5 ft mound of snow that is left from all the snow being piled in our yard and the end of our drive.)

New Jersey has had so much snow in a months time that they have already run out of its budget for snow removal. Towns, businesses, and private home owners don't know where to put all the snow. At the end of our block there is a parking lot with mounds of snow piled 10-15ft high. Our church had to send out an email requesting people to carpool if possible because street parking is so difficult to come by because of all the snow.

1/27/11 Snow and Recovery day

Another beautiful day of snow timed perfectly after I was home from the hospital and settled in to enjoy its beauty!

Today was a beautiful snow day. My roommate, mom and I were stuck in for a relaxing day. Audrey and my mom shoveled, cleaned and chatted with me much of the day. I still hadn't slept at this point because I'm so overstimulated by the meds. Hopefully the doctor can give me a suggestion for this. In the mean time I am trying to not let it fool me and get me to do too much and hurt myself. I am not to lift over 5lbs and my gait is still unsteady. I need to be cautious I don't open the incision site up, and I need to maintain the pressure that will allow healing.

God has been so faithful in this whole process from getting my mom here, to holding the snow off till after the surgery, to providing the little things for my families needs while I am in surgery. God even provided a companion in my friend Carmen, for my mom while I was in the hospital. They stayed at the hotel together for the first few days and Carmen would shuttle her and keep her company. My mom still talks today about how great it was and how she felt so relaxed. Carmen let her be her, let her cry, let her just relax which was what my mom needed while her daughter was dealing with brain surgery. I am already hearing all the stories my mom told Carmen!

Below are a few pictures of the snow day we had...hope it bring joy to you like it does me. God's creation is so gorgeous especially when it is pure white as snow... a reminder of the purity we receive when we accept Jesus as our savior. We are no longer stained, torn, rejected. Instead we are pure, mended, and accepted.

Audrey working on shoveling out her car!

Faith playing in the snow round 1

Oops guess the sweater needs to be longer to prevent these snowballs from clumping on her underbelly. Talk about painful!

Faith in the snow Round 2

This time we tried one of my shirts which was long enough but it was too loose and she kept getting tangled. Guess we are back to square 1!

After Audrey found out her car wouldn't start she started to clean off my car so that she could use it for work until hers could be fixed. My mom decided to go out and help her!

2nd day home

Well after a near catastrophe with not being able to get the pain meds they prescribed when I came home tuesday night, my brothers were able to come to the rescue Wed morning with much needed relief. It had been a very long and painful night but God faithfully got me through it with just the strength I needed and opening the doors the next day. Wed proved to be a more challenging day. I was having a difficult time getting comfortable. My muscles in my neck are tensing and becoming rigid despite trying to move them and taking muscle relaxers. I am supposed to be moving it in all directions, except back, in order to prevent it from ceasing up and begin the physical therapy portion of my recovery.

On top of the tension I began to get a low pressure headache that takes the cake over my headaches post Spinal tap in December. This headache would be a 15-20 on a scale of 1-10. It was an intense, throbbing pressure that makes you want to drill a whole in your head and help it. After my spinal tap, laying down was the best thing and within a half an hour it would go away if I stayed there.

This one just intensified and because of the incision, laying flat was difficult anyway. During the evening I was vomiting and very uncomfortable. That night I took my meds frequently and tried numerous positions to try and relieve some pressure...to no avail.

Today when I woke up I just kept drinking Gatorade as the doctor had said, in hopes to replace the fluid I lost but still the pain, nausea, vomiting persisted. However, despite the pain, I was super hyper and unable to sleep since 7am Wed morning. The pain meds were giving me an energy that doesn't make sense and was making it difficult for me to sit still or relax. My roommate and mom kept telling me to sit down, relax, stop doing things. First off, I don't know well how to stop doing things but then you add these meds and I am the most driven, motivated person you will ever meet.

I have emailed the doctor for suggestions but in the mean time pray for some sleep and pain relief.

Home sweet Home!

I finally got discharged from the hospital last night after one last bolus of IV fluids. They had to keep giving me more IV fluids because in the first 48 hours they had to keep me so dry with diuretics to prevent a coma from brain swelling. So once I was clear of that potential risk they had to help me rehydrate because my body was not producing enough fluid to replace the CSF fluid around my brain. When this happens I get a low pressure headache, dizziness, and nausea. The fluid from the IV's were really helpful but now that I am home I have to be very careful to drink A LOT so I don't end up with low pressure headaches which are only made better by being flat.

The ride home was very long and I didn't realize how difficult it would be. My neck got super stiff and painful. I am suppose to work on keeping it loose but it just so naturally tenses because of the fact that they had cut into the muscles in my neck. Most Chiari patients say this is the part that takes the longest to get better.

On the way home my brother and mom stopped at Target to pick up my prescriptions. By that point I was really in need of pain meds only to find out that Target doesn't carry the pain medication that I needed. We went to the next one and again they couldn't fill it. Once I got home I began calling every pharmacy available and found one that had it. However, because it is a narcotic they needed to be able to reach the doctor and could not. That left me with a night of no pain medicine after just having brain surgery 6 days ago. I had not been able to go more than 2 hours at a time without it.

I made it through a difficult night and until my brothers came to my rescue this morning. Today I am doing ok. Still a lot of pain, and dizziness but I am glad to be on the other side.

I am so grateful to have had the opportunity to have this surgery. As much pain as I am in now, it is crazy how clear my head feels. I can already see an improvement even in the little things like my eyesight and my hearing. I look forward to seeing all the little things that will get better each day over the next few months.

Surgery update

It is Sunday and I had surgery on Thursday. The first 2 days were much better than was expected. By Friday I was able to walk a lap around the hallway. By Saturday I was able to do it once with a walker and one time around without. It felt very good to be up and moving.

Last night the pain management team came in and decided because of a rash I was getting and because of the percocept every 4 hours not being enough they are going to keep the percocept every 4 hours as I need it and I can use Morphine in between to help with the break through pain. It worked well over night and I was able to sleep for 1-2hrs at a given time which is much improved from before when I would sleep a restless 20min and startle awake.

This morning, however, I am feeling the worst since the surgery so we are taking it very slow. There is some concern of a spinal fluid leak because of the headaches coming when I am upright (I am typing this laying flat) also the nausea and dizziness. It feels very similar to how I felt when I was discharged from the hospital in December following my spinal tap. I am praying I don't get it or that at least I will have the strength to be able to endure that again.

They were able to remove the Foley and stop the diuretic which was removing excess fluid from my brain to prevent swelling. This allows me a little more freedom. They are maybe going to send me to a regular floor today but this room is nice because I have no roommate and they are allowing visitors with no problem.

Yesterday my mom and Carmen spent the day with me and I got a nice surprise visit from Loredana, Trish, Anthony, Brad, and German. Later Michelle came by to visit and it was perfect because she was able to drop my mom off at the hotel. My mom absolutely can't stop saying how thankful she is for Carmen who was a huge support to her...it made it easier for me as well, because I didn't have to worry about her getting lost or anything.

Today's goal is to figure out if my electrolytes (potassium, and sodium) are in line...the have not been since the surgery. Also they are trying to rule out what is causing the rash as well as determine if there is a spinal fluid leak. I am not up out of bed today because of the headaches and dizziness. Hopefully I will be able to get up a little later.

God is sufficient for me and gives me the strength I need for each new moment.

Psalm 34

I will extol the LORD at all times; his praise will always be on my lips. I will glory in the LORD; let the afflicted hear and rejoice. Glorify the LORD with me; let us exalt his name together.

I sought the LORD, and he answered me; he delivered me from all my fears. Those who look to him are radiant; their faces are never covered with shame. This poor man called, and the LORD heard him; he saved him out of all his troubles. The angel of the LORD encamps around those who fear him, and he delivers them.

Taste and see that the LORD is good; blessed is the one who takes refuge in him. Fear the LORD, you his holy people, for those who fear him lack nothing. The lions may grow weak and hungry, but those who seek the LORD lack no good thing. Come, my children, listen to me; I will teach you the fear of the LORD. Whoever of you loves life and desires to see many good days, keep your tongue from evil and your lips from telling lies. Turn from evil and do good; seek peace and pursue it.

The eyes of the LORD are on the righteous, and his ears are attentive to their cry;
but the face of the LORD is against those who do evil, to blot out their name from the earth. The righteous cry out, and the LORD hears them; he delivers them from all their troubles. The LORD is close to the brokenhearted and saves those who are crushed in spirit. The righteous person may have many troubles, but the LORD delivers him from them all; he protects all his bones, not one of them will be broken. The LORD will rescue his servants; no one who takes refuge in him will be condemned.

This is my bandage and the place where my head was shaved for the surgery! should be fun styling that until the rest grows out. Hats here I come.


First day following btain surgery and he got me upto the chair... Today the anesthetic had worn off so the pain was getting uncomfortable. And sleep has not come due to the pain meds, steroids, and my diuretic to keep my brain from swelling are causing me to not sleep but 20 minutes at a time.

My mom finally got a chance to do my hair. Something she always wished for when she had a girl...only took brain surgery and 32 years for me to let her. She was in heaven.

Walking with a walker. My first time up.

2nd time up. Once around with the IV pole.

My first postop updated

First off I want to thank Carmen for keeping people up to date with everything as best she could. As well she took my mother under her wing and encouraging her through this first few days. I know it was a lot but it helped me not have to worry about people knowing how I am doing.

So I was leaving for the hospital around 6:30am on Thurs when I received a call about where I was. I guess they had the early case cancel and there was a miscommunication and someone was supposed to let me know I needed to be at the hospital around 5:30am. Once we finally arrived I was rushed back and into surgery quickly. The first hour or so was just preparation. I was actually awake for a while in the OR which was neat to be able to interact with the surgeon and Anesthesiologist. They both had good re pore and we were joking back and forth. It definitely help lighten my day up in light of a major surgery.

When I came out none of my family was around. I was then brought from recovery to my room and don't remember any of that. The first part I remember was the anesthesiologist who came in and ended up helping me as I was throwing up a lot. i kept saying sorry and he kept telling me no problem...it was part of his job.

I kept asking for my family and no one knew where they were. The only number I could remember was Sean's but he was not at the hospital yet. I kept saying that I was going to fire Carmen and my mom! LOL. Once they showed up I felt better. I just was throwing up, combative and disoriented and wanted someone with me.

The first night was the hardest. The pain was well under control because of the remaining anesthesia and the PCA pump which allowed me to take meds throughout on my own. Last night I met with the pain management doctors and we discussed a plan. I did not want to give up the pump if there wasn't a set plan or else it is difficult to stay on top of the pain. However, this morning I woke up with out it and what I thought was a plan. Percocept 2 every 4 hours with a dose of Dilauded about 1 1/2 hours after the Percocept so it would help with the break through pain. The ultimate goal is to get off of the IV meds as soon as possible. It worked ok last night and I was able to sleep for 1 1/2 to 2 hours at a time. However, this morning I am onto a new nurse and she says I can't do that and I just get one dilauded every 4 hours which has not kept the pain at bay. UGGG. Hopefully pain management will come in soon so I can discuss it with them.

They have me still in the ICU to monitor for brain swelling which would put me in a coma in the first few days if they don't keep on top of it. In order to prevent this they put a Foley in me to catch the urine and gave me a diuretic which removed as much as 4-500ml of fluid off me an hour (that's a lot). Hopefully after my last dose this morning I will be off of that and able to go down to a regular floor.

I was able to cancel the pain control pump last night and I am on 2 percocept every 4hrs and a dose of dilauded IV in between to help with the holdover pain. But now they are trying to really change things up and my meds have not been keeping up with the pain today. This afternoon I was not able to maintain the pain as well so we are working with the pain management to try and resolve that issue

Today I got rid of the Foley so I am having to get up every hour or so to go to the bathroom. Then I sit in a comfortable lap chair.

I got a call a while ago and my mom and Carmen are on their way over with slushy in hand. This helps cool my throat but also gives me something with some calories that I can eat. I am still have a difficult time swallowing.

I hope this made sense. It took me hours to write and reread because I was so drugged I was all over the place. I guess this is what you will be getting out of me for a while....babbling.

Thanks for all the messages and support. It means so much to me and is an encouragement as I go through a rough few months of recovery.

Update on SaraJane's surgery

Hi my name is Carmen and SaraJane had asked me to update her blog readers on her surgery. Once she is well enough, she will be able to share with you her thoughts and insights concerning her surgery and recovery. This post is just the details of the last two days concerning her surgery. She will log back on to elaborate more on her experience as soon as she can.

Well, the day (yesterday, 1/20) started out in a whirlwind at 5 a.m. SaraJane woke up got dressed and woke me up around 5:30. I had stayed over the night before to help her and her family out with all the details concerning the surgery. While in the car while we were starting to head out, SaraJane got a call from the hospital operating staff, asking her where she was. They were expecting her at 6:30 a.m. instead of the 8:30 a.m. that she had been informed. A little frustrated, SaraJane told them that she was told to be there by 8:30 a.m. She then told them that she was still in New Jersey and is on her way. They told her to get there when she can.

So off we went, SaraJane, myself and her dog, Faith. First, we stopped to pick up her mom and then we had to go and drop off Faith at the doggy daycare. Finally, off towards George Washington bridge into New York. The traffic wasan't bad as I thought it would be. At this point I was driving and not too familiar with the area. I ended up missing an exit and ended up in upper Manhattan. Luckily, we had a GPS and managed to get back on track after a 10 min. detour. Traffic was not too bad after that, and we made it into the hospital right at 8:30 a.m on the dot - the time SaraJane had been told to be there initially. During this time, we knew to just go forward, despite this setback, because God would work out the details.

Right when we walked into the surgical waiting room, the front desk admin and a medical staff, were just talking about SaraJane. They were very glad to see her, "here she is", we all laughed and they took her in right away. Once she was prepped for surgery, it was 9 a.m. and we met with the anesthesiogist. Once he explained how he was going to put her under and bring her back, we said our good byes. Her mom got a little emotional, and SaraJane was able to reassure her. We were told that the surgery would last 7 hours, so her mom and I left.

We went to the cafeteria and had breakfast and much, much needed coffee. We stayed and talked for a couple of hours, hearing stories of Sara Jane's childhood along with many other tidbits from her past. We then decided to go to the hotel and check in. We arrived, unpacked and rested. I was answering texts, updates and phone calls from many of SaraJane's friends. I got a voice mail message and it was the surgical waiting room admin, leaving me a message for me to call the surgeon. The call came in at around 3 p.m. The first thought that came to my mind was that the surgery went extremely well, the second thought was that they couldn't do anything for her and were not able to "fix" the chiari malformation. Her mom was extremely worried. I remained calm and matter of fact. I called the surgeon's number and got his voicemail, so I left a message. We left the hotel and went back to the hospital. On the way to the hospital, while looking for a parking spot in the crowded garage, I got a call back from the surgeon. He told me that the surgery was very successful and that he ended up finishing ahead of schedule. He then proceeded to explain some of the details, but I did not understand much, which I'm sure SaraJane will fill you in on those details. Just that it was successful was enough for me! Praise God for working out all the details of this journey and for those around SaraJane, seeing this miracle take place, really increased our faith.

When her mom and I walked into the surgical waiting room, we were told that SaraJane is out of surgery, and to wait 10 minutes while they try to find out what room she is in. Well, the 10 minutes turned into 30 min. and then another 20 min. In the meantime, I got a call from her brother who told me that he got a call asking him where we were that SaraJane was in the neosurgical unit and was in the room waiting for us. The front desk staff, could not locate her. Some more time goes by and her brother shows up, tells the front desk staff about the phone call he got and they tell contact the neosurgical unit. Lo and behold, she was there in a room assigned to her.

We finally get there and the first thing she says to us when she sees us is "you're fired, you're fired". LOL!! Evidently she was upset because we were not there when she got out. We explained to her about the mix up and after a few minutes she felt better. I thought it was a good sign and she was back to her old self. The drugs were kicking in, but her personality was showing through, so I didn't see much brain damage there. haha!

We spent a few hours with her, while she got adjusted to the IV's and getting comfortable in the bed. She was feeling some surgical pain, but nothing like the debilitating symptoms she had before the surgery. The trembling in her hands had decreased dramatically!! Praise God!! She had a slight numbness in one leg, but that was attributed to the position she was in during the surgery, and it was slow in getting her feeling back. After that, we said our good byes and left for the hotel.

The next day, (1/21), it snowed and it took us a little longer than expected in getting back to the hospital We learned that SaraJane was texting other family members, giving them tasks to do, starting from 6 a.m. that morning. We all chuckled, knowing that SaraJane was back and giving orders and organizing tasks. Woo-hoo! Another positive sign was her asking for a milkshake. We finally arrived with her milkshake and she was looking better. She had not slept much, but was in better spirits. She was even able to get up and walk around the ward a couple of times, with the assistance of a nurse and a walker. During the walk, she was talking to the nurse, giving her advice on running shoes and what marathons to run in. Yup she's back!! We spent a few more hours together and then left her for the night. She had her toiletries bag, her books, her knitting and her laptop for her stay. She also asked for her Bible. She was ready!

So that's it for now. To be continued, by SaraJane. She wanted me to update you on her progress and now she will be taking over with her insights and thoughts on this adventure.

Signing off, this is Carmen! God Bless!!

A note regarding my Surgery

A quick note regarding my surgery.

My surgery is scheduled for 10:30am and I believe is about 9 hours. I have to be there at 8:30am for all the preparations.

The surgery will be at North Shore University Hospital (300 community Dr., Manhasset, NY). Some of you have asked about visiting and if I would want that. I would love visitors but I will spend about 2 days of my 5 to 7 day stay in ICU. It does not make sense to drive all the way out there if I am still in ICU because of the stricter visiting hours. So please just verify I am on a regular floor and that I am still at the hospital before making the long trip.

My friend Carmen will be trying to post on here and my Facebook page for the first few days to keep you posted.

Thank you for all the love and support. It means so much to me and my family!

It is Well with my Soul!?! Even with Surgery tomorrow?

A well known song goes like this:

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.

It is well with my Soul

It is well with my Soul

It is Well, It is well, with my Soul

This Hymn was written in the 1800's and you would think it would have been written by a man with much, a man who had little wants. However, it was written from the heart of a man who had lost his only son at the age of 4 to illness, lost his investments and all his money with a major fire, then lost all his daughters in a boat accident. And yet this man was able to say "It is well with my soul!" This comes from a man who didn't ignore the pain, but who had been touched by the one who suffered SO much more than he ever would. This is penned by a man who had hope. Hope not in this present day but hope in eternity because he had accepted when the Bible says, "Whoever believes in Him (Jesus) is not condemned..." Jn 3:18.

Believing in Jesus and being a Christian does not mean an easy life. If anything it means you might even face more difficult times. For me, as I face this day of major surgery, I have been asked if I blame God. Do I Blame God? No! Do I feel like He is punishing me? No but I believe He allows things to happen that our character may be developed. I can truly say this past few years, especially the past year my character is being challenged and grown.

Tomorrow is one of the toughest days I may face and I am grateful for it though I may not like it. I am grateful because it has challenged me to be a better person, to love others more, to look at life through a different lens. I could write a book to share of ALL the AMAZING ways that God has provided and moved things just right so they would work out. When doors seemed closed, or locked He redirected me. When, I was at some of my lowest points He put people in my life to love me and encourage me. When doctors were not sure what to do, He put an amazing doctor in my life who helped me navigate my way through the process.

God is amazing, and I truly believe tomorrow is going to be a work of His masterful hand. The success rate is not 100%, it is lower, like 80%. But all week God has really laid on my hear that "Tomorrow is going to be a new day!" The old will be washed away and the new will come in.

It is my faith in Jesus and such an AMAZING God that gives me a peace that does not make sense in light of the brain surgery I face in less than 10 hours. It is this love of my heavenly father that has given me the courage to move forward and take a step of faith into an uncertain fate. With God my fate is certain, and tomorrow will begin a new day!!!

“Praise the Lord, O my soul.” Psalm 146:1

God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah. Psalm 46:1-3

Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid. John 14:27

A few more days to go...

With just a few more days to go till surgery I have SO much on my plate and yet so little. Yesterday I went to church and then in the evening a few girls and I went out for dinner and hat shopping (I don't have the photos so will post them soon...they are a bit crazy). Today was a day of tests. I had to go in for another CT scan cause the one they did when I was hospitalized was not the right one. I also did an MRI so they would have the most detailed scan for the surgery. And lastly they did an ECHO to make sure my heart is good for the 9 hour surgery. Phew!

Tomorrow all I have planned are just getting things around the house ready and having lunch with my sister n law.

Wednesday is another long day. I have to pick up my info from today's tests and drive out to Long Island for my pre-op appointment at the hospital. Then my mom flies in at 4pm. And somehow I must try to sleep that night.

Thursday my surgery is not till 10:30 am as I am the second case. But you have to be there 2 hours early. during this time they will shave the back of my head, I will meet with the surgeon and the Anesthesiologist, and an hour before a company they use to monitor your nerve and muscle status will come in and put a bunch of electrodes on that will allow them to monitor the status of those nerves and muscles. This allows them to know if there is any problem before they close the surgery up.

It will be a late night as I won't even come out of surgery till around 7:30pm and then I will have some time in the recovery room before going off to the Neuro ICU.

I can't believe how fast it is all happening. I have known for a year that this was coming but until I had a date it was not real to me. Now it is very real and I am nervous. I am at Complete peace and know that this is the right thing to do. I also know that God has directed each and every step of the way and will not bring me this far to leave me hanging. But even in knowing that, I am still human and I am still nervous. I will be glad when I am through Thursday and can begin the long and hard recovery process.

A whirlwind of Activity

So the past few days have been a whirlwind of activity but we are finally settled. As many of you know I am in need of having brain surgery to repair a Chiari Malformation (herniation of a portion of the brain into the spinal canal). My surgery got moved up so I will be having surgery Next Thursday January 20th, 10:30am at North shore University hospital (300 Community Dr, Manhasset NY). The surgery is quite extensive and will be about 9 hours long. Following surgery I will be in Critical care about the first 2 days. I will then stay 3-5 more days on a regular step down unit.

We just found out this week during the approval process, that the hospital is no longer an in-network hospital. This is a significant change and would cost me 40% of the entire hospital bill which was not expected. However, they have decided to approve it for me as an in-network hospital which is a HUGE blessing. This saves me 10's of thousands of dollars.

I am so AMAZED at how God has provided and the way He is using people to provide and meet needs. Between my family, friends, and my church God has provided an amazing group of support for me as I go through a difficult 4 or more month recovery. I look forward to sharing Gods blessings with you along the way!

Please pray for:

Divine guidance of the surgeons hands

For the details as I plan my surgery

For my moms flight coming in on Wednesday

For complete healing with the surgery

For the healing process

Dilemma solved

So my ultimate dilemma was explained in the earlier post. The gist is that I had to decide between two doctors. After much prayer and research I finally came to a decision that I had peace about.

One of the things that helped was having a detailed email discussion with my surgeon out at the Chiari institute. They have done more than 3000 of these surgeries since 2002 where the average surgeon does 3-5 a year. The surgeon that was available to me at Valley was in this camp. Beyond that he leaves the herniation and simply just opens up the space around it so that there is hopefully no pressure on the brain. This can work but leaves a lot up to mother-nature and chance. The Chiari institute has perfected a way to treat the herniation with less than 0.03% risks (the lowest in the country).

On top of that, I had the privilege of talking with some of the people who have had surgery out at the Chiari institute. These are not people they referred me to. These are people I have come across over the past 3 or so months. This is quite amazing in light of the "rarity" of the condition. Everyone of them swore by the doctor there and some of them even had been to others and had had to come to this surgeon to have their repair repaired.

When I look at those factors I felt the best place for me was at the Chiari Institute. I really would like to only have the surgery once, and have the best chance at a complete repair. This meant going to the place who not only does a significant amount but also the place who does not leave the portion of the brain herniated.

Since making this decision God has only confirmed it over and over. I will share this in more detail later.

The Ultimate Dilemma...

So this past week I have been presented with the ultimate dilemma. Last Tuesday, I met with a Neurosurgeon who does surgeries at both Valley and Columbia. He was originally not supportive of doing my Chiari surgery because he felt there were other possible causes for my symptoms. This was one of the doctors who consulted on my case while I was in the hospital. When I walked in to his office I was ready for a serious discussion. I was fed up with meeting with doctors who said that my issue was not related to the herniation in my brain and yet could not give me any answers or solutions.

When I walked into his office we discussed the fact that since my spinal tap during my last hospitalization my symptoms had worsened quite considerably. This was a concern when they decided to do the spinal tap but they felt the risk was worth it in order to rule out Multiple Sclerosis completely. M.S. was ruled out but I ended up with a Spinal leak and headache for nearly 2 weeks. Once that went away my Chiari symptoms had worsened keeping me from returning to work.

After this he went over all of my MRI's old and new. He measured my herniation on my recent MRI and said it was more than 5mm. This is an increase from the original one last February which was 3 mm. The other thing that was shown is that there is a blockage of CSF flow. It is not completely blocked but is hindered. These MRI's are done lying down so there is a possibility that this is worse when upright and gravity has its effect. He then explained to me how the surgery that they use to fix Chiari is done. The next thing I know he turns to me and says, "I really want to help you! I can see that we are at the end of our options and I would like to do the surgery for you!"

Wow, I was not expecting this! I had had so many doctors who had dismissed me, I was hitting the end of my rope. I had gone from running marathons, working overtime, spending time with friends and leading a busy life to now I work by the skin of my teeth and forget my love of running...that is impossible. I have gone from a very active person to an inactive person that sometimes I don't recognize. I have taken up knitting and reading. None of these things can replace my active lifestyle or my love for activity. One day I dream of returning to those things I love but in the mean time I must focus on getting better.

Thursday I went to The Chiari Institute for a follow-up visit. They are specialists in this condition. They treat thousands of patients with the same condition that I have. He told me that we were at the point where surgery was the next step. Now starts the ultimate dilemma!

I now have 2 neurosurgeons willing to do the surgery that gives me the opportunity to get better. It is not a 100% guarantee. It may fix all of it, or just some of it. But we know that nothing else has worked and we are at the last option.

Neurosurgeon #1:

Columbia Presbyterian/Valley hospital surgeon

Director of Columbia's North Jersey office

only does a handful of this particular surgery a year

Insurance covers same as the other Neurosurgeon but because of my employment at Valley it would be waved.

Opens up the area and makes more space to release pressure but leaves the herniated cerebellar tonsils as they are

Neurosurgeon #2

Surgeon at The Chiari Institute

Does 100's of these surgeries a year and more than 3000 total

uses a special color Doppler in surgery

Opens up the area and makes more space to release pressure. Has a system for determining the need for deciding whether to leave the tonsils or to move them back where they are supposed to be.

Would have to cover what insurance does not cover.

Negative: has lawsuit in process but is not related to the surgery I am having. Was able to openly discuss this with them. they have been very diligent in their evaluation of me and have not been pushy towards surgery at all.

When I speak to people at the hospital I work at they say that I should make a decision not based on money but based on the one who does more of this particular surgery. Initially this was my mindset. However, now that I am at the decision point that is not so easy to do.

This is one of the most difficult decisions I think I have been faced with. Normally I am a decision maker but in this one I find myself at a loss for words.

This experience is drawing me closer to God rather than further. It is putting me in a place where I am fully dependent on Him...the best place...the place where He can mold me and shape me. Some people ask why? I know why. No I don't know exactly why I must go through this but I do know the broad reason. God uses these things to mold us and shape us...to make us into a better person. His word says that "He works all things together for good for those who love Him." Of course I don't want to go through this but if I can grow closer to my God through this and learn to love others better, become a stronger person then it will all be worth it. If I choose to let this learning opportunity slide then it will have all been in vain.

A few verses that have been of comfort to me lately:

If God is for us, who can be against us? He who did not spare His own Son, but gave Him up for us all--how will He not also, along with Him, graciously give us all things?...Christ Jesus who died--more than that, who was raised to life--is at the right hand of God and is also interceding (praying) for us. Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword?...In all these things we are more than conquerors through Him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus. Romans 8:31-32,34-35,37-39

Psalm 31:

In you, LORD, I have taken refuge; let me never be put to shame; deliver me in your righteousness. Turn your ear to me, come quickly to my rescue; be my rock of refuge, a strong fortress to save me. Since you are my rock and my fortress, for the sake of your name lead and guide me. Keep me free from the trap that is set for me, for you are my refuge. Into your hands I commit my spirit; deliver me, LORD, my faithful God...

Be merciful to me, LORD, for I am in distress; my eyes grow weak with sorrow, my soul and body with grief. My life is consumed by anguish and my years by groaning; my strength fails because of my affliction, and my bones grow weak...But I trust in you, LORD; I say, “You are my God.” My times are in your hands;...Let your face shine on your servant; save me in your unfailing love...

How abundant are the good things that you have stored up for those who fear you, that you bestow in the sight of all, on those who take refuge in you. In the shelter of your presence you hide them from all human intrigues; you keep them safe in your dwelling from accusing tongues.

Praise be to the LORD, for he showed me the wonders of his love when I was in a city under siege. In my alarm I said, “I am cut off from your sight!” Yet you heard my cry for mercy when I called to you for help.

Love the LORD, all his faithful people! The LORD preserves those who are true to Him, but the proud he pays back in full. Be strong and take heart, all you who hope in the LORD.

Chiari Update

So I have been out of work now for 5 weeks now. This means that I have used up 5 weeks of my 12 week guaranteed job protection. I still have 7 weeks left and another 12 weeks of unsecured job protection. But I cannot afford to use up the time now before surgery so tomorrow I will try to return to work. I am praying for God's strength as I return to work...I know I will need it. Before my hospitalization I had a difficult time working and now that my symptoms have worsened it is going to be even more difficult.

I now have daily headaches that require pain meds to lessen them. Nothing completely makes them go away. I have vision issues at times, right sided weakness, and I tend to drop things a lot. Now I also have these spasms that cause me to have really strong twitches. It often happens in my legs and arms but sometimes it will happen in my abdomen causing my entire body to seize. They have me on very heavy muscle relaxers which only helps a little.

I am handling the difficulties of these symptoms but I will not lie...I am praying that this surgery will happen soon and that I will have complete relief from them. I choose not to let them get me down and by the grace of God I am able to keep my spirits up but if I am not spending time in the Bible and praying it is easy to lose sight of this goal.

Please pray for:

my return to work that I will be able to manage, and for enough hours to pay the bills

For my decision regarding surgeons

For the surgery to happen quickly

For me to be gracious to those around me as I deal with chronic pain and that I would show much love to them as Jesus has shown me.

I really appreciate the people around me who are constantly encouraging me and supporting me. It is things like this that God uses to show me He is right here with me. I pray that people will see the love of Christ in my life so abundantly. My life has been changed by Christ and I know that I could never have gone through this with out Him.