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!
Monday, January 17
A few more days to go...
Posted by SaraJane Campbell at 9:49 PM 0 comments
Friday, January 14
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.
Posted by SaraJane Campbell at 8:33 PM 0 comments
Thursday, January 13
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.
Posted by SaraJane Campbell at 8:43 PM 0 comments
Monday, January 3
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.
Posted by SaraJane Campbell at 8:06 PM 0 comments
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.
Posted by SaraJane Campbell at 7:15 PM 0 comments
Thursday, December 30
Blizzard of 2010!!!!!
Last Sunday around 1pm the snow began to fall, lightly but that was just the beginning. By early evening the snow was coming down at 2-3 inches per hour. Over night the winds began gusting up to 50mph causing blizzard conditions. By the next morning NJ was covered in various amounts of snow. Our town received 30inches. In all my life I have only seen this much snow up in the mountains. Snow was up to my waist. And the usually well maintained roads during snow storms were covered in snow. The snow had come down so hard that the well equipped towns could not keep up. Either snow was coming down too hard or the wind blew what they plowed right back on the roads. NJ called a state of emergency and there was no where to put all the snow.














Posted by SaraJane Campbell at 7:37 PM 0 comments
Monday, December 13
What's next????
Posted by SaraJane Campbell at 11:39 PM 1 comments
Spinal Headache Update
Following the blood patch Wednesday, which was hoped to stop the spinal leak that was causing me such pain, I continued to have severe headaches with little improvement. Apart from the nausea clearing up, I was still bed bound. Finally Friday night I was able to sit up for a few hours and enjoy the company of some friends and by Saturday more than a week after the spinal tap I was able to be up for 3 hours which was a significant improvement. Sunday I went to church in the morning and was able to be up for about 3 hours before my body said enough.
Posted by SaraJane Campbell at 11:07 PM 0 comments
Wednesday, December 8
Update
This morning I went in for a Blood patch, where they try to close up the hole they made when they did the spinal tap. The drive was very difficult because I could not lay flat, and the movement was tough. Once they got me in they performed the patch. This is where they take my own blood and place it into the lower spinal area where they did the lumbar spinal tap. The idea is that my blood will form a clot over the hole and stop the leak.
Posted by SaraJane Campbell at 11:21 PM 0 comments
Tuesday, December 7
Hospital update
Well Saturday I was released from the hospital after 4 1/2 days. The great thing was they were able to do the spinal tap that I needed to do before they moved forward with surgery. I had the procedure on Thursday and will find out the results this week. The frustrating thing was that they gave up on the idea of doing a patch right away and decided to try to let my body heal from the spinal tap on its own. My body does not have a good track record with this. It is now Wed morning and I have not been able to even raise my head on 2 pillows without the most severe pain I have ever had, dizziness and nausea. They finally decided that at 10:30am I will finally get the patch that should stop the spinal leak and the wonderful headaches that go along with it.
Posted by SaraJane Campbell at 11:37 PM 0 comments
Thursday, December 2
hospital update
I am on day 3 in the hospital. Was feeling improvement until today. They did the ever necessary spinal tap which according to my last appointment with the doctor was the last thing needed before surgery. So though it was necessary I was not looking forward to having a long needle stuck in my back. Because of my connective tissue disorder I am at high risk for spinal fluid leaking at the needle site causing very painful spinal headaches. I don't have anything as bad as when I had the complication with a spinal tap previously but I feel like it is building into one.
Since I have been here they have done 2 MRI's, CT scan and an X-ray. The first MRI showed an increase in the herniation to the ever important 5mm mark. The Chiari institute and other Chiari specialist believe that a herniation of 5mm to be Chiari and require surgery. Other doctors who know less about it often don't recognize anything until it is 5mm. The current standard has begun to change which is that Chiari is any herniation, with a smaller hind brain than normal and significantly symptomatic. Previously I fell into the more recent standards but now I am recognized by both standards.
The surgeon at Valley who is overseeing my case because my normal surgeon does not come to Valley, says that Surgery is a last resort as does the Chiari institute. He wants to make sure that I have no other possible neurologic problems that could cause it...thus the gammit of tests. I still have two more to do (EMG-study of nerves and muscles to see why I have such weakness and problems with my right side and an ECT- to evaluate the nerves to my eyes and ears because I have had increasing problems with them). So if these show negative then I will have a 3rd doctor recommending surgery. I am hoping that since the spinal tap was a month earlier than originally planned that maybe i can get the surgery done before the end of the year. Due to the changes in health care insurance my rates are already changing significantly which means the cost of the surgery will going up after January 1.
God is in control and knows when the right time is and I am just trying to trust that.
P.S. I apologize if the writing of this blog entry is not clear. I am on significant medication. It took me 4 times to reread this and try to clean it up. Everything is muddled in my brain so I am sure it is not my best writing. LOL
Posted by SaraJane Campbell at 5:48 PM 0 comments
Wednesday, December 1
Hospitalized
Tuesday I had a headache and pain that was not responding to pain meds I usually take. So Sean took me into the ER. Thankfully it was a slow night and I was seen right away. The doctor I had this time was fabulous. They were concerned by my right sided weakness, spasms and other issues so they admitted me based on vomiting and dehydration. I have been here 24 hours with little sleep but today they seem to have found a better combination of meds to help with the pain as well as help me not be hyper on the pain meds. I still can't sleep but the doctor has ordered something to sleep so hopefully I will sleep the night away.
Today I went in for an EEG of the brain as well as a flexion/extension X-ray of the neck. Tomorrow and poss Friday I have a list of tests including a spinal tap, EMG of the muscles and nerves and other tests. The Neuro surgeon here is really good. He is so friendly, down to earth, and is being very thorough. I will keep you posted to how things go but I am just grateful to be comfortable again.
Posted by SaraJane Campbell at 9:12 PM 0 comments
Another Birthday gift...GO Portland Trail Blazers




For my birthday Sean and Jimmy got us up front and close seats to the Blazers and NJ Nets NBA basketball game. The three of us and a friend of mine all went on Sunday to the game. The Portland Trail blazers were in town for the game and we were surrounded by NETS fans who loved mocking us in good fun. Ironically though a man came and sat next to Sean and he was wearing and Oregon Ducks sweatshirt. How odd that in 1000's of seats the Oregon man sat next to us.
The Blazers lost but the game was fun to be with my BIG brothers! Here are some pictures to enjoy. They even got my name on the big screen with a Happy Birthday wish...no pictures of this though!
Posted by SaraJane Campbell at 8:44 PM 0 comments
Happy Birthday to me!
To me Birthdays are not my favorite being that it means being the center of attention. But this year was special. I had Friday off and got to go to Red Robin for lunch with my 2 brothers, nieces, and nephew. Such a fun time. When it comes to gift giving and receiving I find quality time to be so precious. What a special day to spend quality time with my big brothers and family.
I woke up and spent the morning on the phone with my mom, then met up with my family. After a brief nap, I went over to my friend Loredana's house to spend the evening with her. To my surprise a few other girls came over and we enjoyed good food and fellowship. Afterwards Loredana played guitar and we had some time of worship and then each of the girls prayed over me for a blessed and God honoring year!
A few years back when I moved to NJ I never foresaw the blessings that were in store for me. But everyday I am here I am blessed with my family, a great church, and such wonderful friends. Can't wait to see what more God has in store for me.
I have a few pictures but don't have them with me here so will post soon!
Posted by SaraJane Campbell at 8:33 PM 0 comments
Thanksgiving and so Thankful
Give thanks to the LORD, for He is good. His love endures forever!
Give thanks to the God of gods. His love endures forever!
Give thanks to the Lord of lords: His love endures forever!
Psalm 136:1-3
I had a blessed and filling day however, God is showing me that Thanksgiving is SO MUCH more than a day of eating and eating and more eating. It is a day to be thankful for all that we have been given. After so much suffering the early Americans enjoyed thanksgiving because they knew that God had brought them to where they were and offered them so much even in the suffering and death they experienced early on. Thankfulness is a perspective and I am learning to be thankful even in the difficult times.
This year has not been an easy one as I deal with illness and the chronic pain that comes along with it. I have had to put running on hold, and have had to not be so involved in ministry and friends because of the time I need to rest and deal with the issues. However, despite this I would term this as a year of learning to be thankful:
I have learned the bond of family!
I have learned how strong I really am!
I have learned I have some REALLY good and faithful friends!
I have learned new ways to cope in difficult times!
I have learned the new skill of knitting (hats, scarves, purses, sweaters)...who ever thought a type A personality like me could learn to knit and enjoy it...but even knitting I do with a type A mindset. HA HA!
I have learned that God is my every strength in times that are good and times that are bad.
I have learned that God never leaves us or forsakes us!
I have learned that God is faithful to provide in SO many ways!
I could go on and on and on but I think you get the gist.
I pray that each day of my life I will remember to be thankful in all things. I also pray that each of you can find that same peace that comes from the thankfulness and peace we gain when we are saved by JESUS CHRIST! "Jesus is the way the Life and the Truth!" In learning this in my life I have learned a new peace and thankfulness that I have never known in my life.
Thank you for your friendship and faithfully pouring into my life in whatever way that might be!
But thanks be to God!
He gives us the victory through our Lord Jesus Christ.
I Corinthians 15:57Posted by SaraJane Campbell at 7:46 PM 0 comments
