Sunday, December 28, 2008

What's Your Status?

So how long can I use the 'brain surgery' excuse for not blogging nearly enough? I am way overdue for a status update, right? Well, for starters, the Wii has officially kidnapped my children. They love the Wii Fit games and spend pretty much all waking hours learning new skills. We have all had fun playing the games, although, as you can imagine, I am banned from playing most of them for a great fear of disturbing the healing zipperhead!

Physically, I feel like my strength is returning with the passing of each day. Any pain in my head/neck can be taken care of with some Advil and/or a muscle relaxant if I am having a really tough day. But seriously, I just had brain surgery, shouldn't I be in excruciating pain? Nope ~ can't explain it other than prayers have been answered and I have a wicked high tolerance to pain ~ what a blessing! I am hoping to start driving this week, even if it's a trip around the block. I know that mentally I am coming around because I have started compiling lists of things I want and need to do already.

Many people have asked me if I can tell if my symptoms from Chiari are gone now and my answers are still a little on the vague side. It's hard to tell, but I can say that the vertigo seems to be gone and the crushing Chiari headaches. My short term memory seems to be returning, too. I think I am still existing in the decompression honeymoon phase. How do you go back to 'normal' after brain surgery? What is normal anyway? My main goal going into brain surgery was to survive ~ keep breathing ~ choose life. So, since I seem to have accomplished the basics, now what?

Wednesday, December 24, 2008

O LORD, you have searched me and you know me

I have found it particularly difficult to get into the Christmas spirit this year. All things considered, it's only been three weeks today since I became a zipperhead! This morning when I arose, it dawned on me ~ what is the real spirit of Christmas? The answer is painfully clear ~ the birth of the Lord's only Son ~ JESUS. Personally, I know if it were not for my faith and belief in Jesus I probably wouldn't be sitting here blogging today. Faith and prayers continue to heal me from the inside ~ out. Wishing you all a very Merry Christmas. May you have a renewing of strength and hope this Christmas season.

Psalm 139 New International Version (NIV)

1 O LORD, you have searched me and you know me.
2 You know when I sit and when I rise; you perceive my thoughts from afar.
3 You discern my going out and my lying down; you are familiar with all my ways.
4 Before a word is on my tongue you know it completely, O LORD.
5 You hem me in—behind and before; you have laid your hand upon me.
6 Such knowledge is too wonderful for me, too lofty for me to attain.
7 Where can I go from your Spirit? Where can I flee from your presence?
8 If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn, if I settle on the far side of the sea,
10 even there your hand will guide me, your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me and the light become night around me,"
12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,
16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
17 How precious to me are your thoughts, O God! How vast is the sum of them!
18 Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.

Saturday, December 20, 2008

By Your Side ~ Tenth Avenue North

The Christmas season is filled with every emotion imaginable. For some, it is a time of sheer joy and happiness ~ for others time of deep sorrow and despair. The song I posted above is a gentle reminder of the true meaning of Christmas. God sent His only beloved son to earth to die and rise from the grave so that we can live with Him in heaven some day.

If you are feeling a bit down and depressed during the holiday season, I pray that you find renewed hope in life. Know that you are never alone. Take a moment to listen to the song I posted above ~

Friday, December 19, 2008

Season of Healing

A friend of mine sent me a really neat e-mail message the other day that really resonated with me.  I have pasted it below. What really got me thinking was the metamorphosis of my zipperhead. If you've been reading my blog, you have seen the picture posted of my newly shorn head. It's been 16 days since my surgery and I have healed so well, my hair is growing back quickly.  I guess what I am trying to say is we all see things differently. 

An innocent web surfer who would stumble upon my picture might gasp in horror at the sight of my zipperhead. But to me, friends and family, who have walked along side me during my chiari journey might view my zipperhead differently.  To me, it's definitely a victory badge ~ a sign of the end of one journey and the beginning of a new, healthier one. A wise friend of mine referred to my scar as 'a line of strength and determination' ~ I really like the sound of that! 

There was an Indian Chief who had four sons. He wanted his sons to learn not to judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away.

The first son went in the winter, the second in the spring, the third in summer, and the youngest son in the fall.

When they had all gone and come back, he called them together to describe what they had seen.

The first son said that the tree was ugly, bent, and twisted.

The second son said no it was covered with green buds and full of promise. 

The third son disagreed; he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen. 

The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfilment.

The Chief then explained to his sons that they were all right, because they had each seen but only one season in the tree's life. 

He told them that you cannot judge a tree, or a person, by only one season, & that the essence of who they are and the pleasure, joy, and love that come from that life can only be measured at the end, when all the seasons are up. 

If you give up when it's winter, you will miss the promise of your spring, the beauty of your summer, fulfilment of your fall. 


Don't let the pain of one season destroy the joy of all the rest. 

Don't judge life by one difficult season. 

Live Simply. 

Love Generously. 

Care Deeply. 

Speak Kindly. 

Leave the Rest to God. 

Happiness keeps You Sweet, Trials keep You Strong, Sorrows keep You Human, Failures keep You Humble, Success keeps You Glowing, But Only God keeps You Going!

Tuesday, December 16, 2008

Blessing In Diguise

OK, finally I was able to get upload images from my 3D CT scan of my head. How surreal is this to get this up close and personal?!!! My intention in publishing this beautiful pic of my head wasn't to freak any of you out, but from a medical miracle perspective.

The C1 vertebrae is the tiny one at the base of my skull. My surgery pretty much did away with that vertebrae, leaving the C2 to hold my head up on my shoulders. Remember how I mentioned that my C2 was freaky big? Well look at it ~ it's bigger than bot the C3 and C4 put together! Talk about a blessing in disguise. Clearly this is a birth defect that I had never known about or seen until now. In looking at the big picture, the fact that my C2 is mis-shapened and clearly overdeveloped, I have a good chance of avoiding the fusion surgery later.

Sunday, December 14, 2008

When Doubt Creeps In

Last night was the first night since my surgery that I can say that I got a good night of rest. When I awoke this morning, for a second, I totally forgot that I had even had surgery.

Shortly after awaking, I stumbled down stairs to make a strong pot of coffee. As I was filling up the pot with water a speck of red caught the corner of my eye. I peered out the kitchen window and saw the most brilliant cardinal perched on a frozen tree in our neighbors back yard. In an instant, I felt the hand of God on my left shoulder and the words, "It's going to be all right!". Then the words of Amy Grant's song, All Right. started playing in my head:
It's going to be all right, you give me what I need ~ That it's all right what may come. What strengthens hope my eyes will never see.
Just this morning as I was washing the misty visions of sleep away, the doubt was seeping in. Making me second guess my decision to have brain surgery. Why in the world would I put myself all of this pain and rehab? Couldn't I have lived with my symptoms forever, learn how to deal with it? And then, the vision of the cardinal ~ bold, scarlet, standing out in sharp contrast against the icy background, clear and inescapable. If you have been following my blog for a while I have mentioned the symbolism of the cardinal many times. Whenever I see them they send me powerful messages right on the spot.
ALL RIGHT ~ Amy Grant

Looking out to the hills
To the setting sun
I feel a cold wind
Bound to come
Another change
Another end I cannot see
But your faithfulness to me is making it
All right
I fall down on my knees
Tell me that it's all right
You give me what I need
Years of knocking on heaven's door
Have taught me this if nothing more
That it's all right, what may come
I've heard it said
When the river's running high
You get to higher ground or you die
Well muddy waves of pain
Washed over me
And it only made me see it's gonna be
When will I learn there're no guarantees
What strengthens hope, my eyes have never seen
But it won't be long
Till the faith will be sight
And the heavens will say
It's all right

Friday, December 12, 2008

Then, There Was Before Me An Open Door

Hi, my name is Lacie and I am no longer an addict. It's day two of no morphine and even though I still have a wee bit of the shakes my head feels so much more clear. I have been taking Advil for the pain as needed and it seems to be working. It's only been 9 days since my brain lift and I am already bored to tears ~ seriously!

We had a wicked ice storm last night and I was awoken from sleep every hour with the crashing sound of falling limbs. Thank goodness we didn't lose our power. The sleet has changed over to snow this morning and I have to say it's beginning to work on my non-existent Christmas spirit already. I apologize in advance for a scattered blog, but the brain isn't firing on all cylinders just yet. So, apparently I blogged at least once while I was in the hospital. I remember writing, but have no idea what I said. The funny thing was the pulse-ox meter that was on my finger was beeping like crazy the whole time I was tying, because I was supposed to be still. I am still trying to unwind all the thoughts in my brain about all the experiences I went through over the past 2 weeks.

One feeling that was predominant through everything was a sense of peace and calm ~ completely. Prayers were definitely heard and answered. I knew I was being cared by the best of the best chiari docs and had no fear. Even on the worst days I knew that if I just kept breathing I would certainly get through it all. ~sigh ~ So, I can't officially wash my hair until 2 weeks post-op ~ next Wednesday, 12/17 ~ last night John and Mom managed to throw some plastic bags over my incision and were able to wash what hair i have left. The pony tail hair doo is beginning to get very fashionable around here. OK ~ need to lay down for a while ~ more later ~ thanks so much for all the comments and messages. Who knew I had such a big fan club. Love you all ~ send me some ideas to quench this boredom, please ~

Tuesday, December 9, 2008

Checking Out and Heading Home

Sorry for the lack of updates. The last day and a half has been very busy and without wireless access.

Monday morning we were hoping to get discharged from the hospital so Lacie could make her PT appointment on Long Island at 11 a.m., but things did not go quite as expected. Lace woke up feeling dizzy and sluggish and we weren’t sure at first if she was even going to get discharged. Dr. Stasi came by around 9:30 and looked her over. His thoughts were that this was a case of perhaps overdoing it a bit the day before combined with her also going off her steroid medication the day before. We hoped he was right. The hospital PT specialist also met with her and was very pleased with Lacie’s progress.

So, after a few delays, we were discharged a few minutes before 11 and we hustled over to the PT appointment. This took longer than expected as the directions were terrible and a 15-minute drive took almost an hour. By the time we arrived, Lacie was feeling quite nauseous from the drive and needed a rest. The doctor was quite gracious, helping her to lie down in a private room and talked to us about the therapy procedures while she rested. He took her blood pressure and it had dropped to around 60 so she needed some serious time to rest and get her blood pressure up while we waited.

We returned to Variety House for the afternoon and evening and she took a nap and slowly improved enough to eat a little dinner and watch a movie before an early bedtime.

Today she is doing much better. We are departing the Variety House around noon to return to Albany today. Please pray for a safe trip and for Lacie to feel well while we are travelling.

Sunday, December 7, 2008

Sunday Update

Things continue to go well. Lacie had her IVs removed overnight and is now running around completely wireless, which I imagine is a big relief.

Lacie's mom Sandy (pictured) departed late this morning to head back home to help out with the kids for a few more days before we return. She was a huge help while we were here as she and I often split time with Lacie so as to give one another a break. 

We are hoping to be discharged early Monday morning so as to make a physical therapy appt. here on Long Island at 11 a.m. Monday. TCI is now referring their patients to a local PT for one appointment with a PT that they are working with that is trained in Chiari-related therapy. This is great news to us because it seems that most (if not all) of our Albany-area PTs know nothing of Chiari syndromes and how to treat them. The idea is this guy treats her once, shows us what to do, and we bring that information back to our Albany PT to show them what to do. Hopefully they'll even give us some handout materials.

We may also drive back home Monday afternoon as there is some bad weather looming for late Monday night all the way through Thursday. At first they were hinting at a small blizzard, but now it looks like one of those snow/rain messy mixes. I'm sure it could change again depending on the storm track.

That's all for today. Giants lost. Bah-humbug! 

Saturday, December 6, 2008

Walking Tall

Well, as you can see from the picture, at least some of us are walking tall! But seriously, Lacie is doing great and has been out walking laps around the NSCU twice today, two laps the first time, and three the second. She got a sponge bath late this morning and was able to put some regular clothes on, which I think was a big relief. Her mom also combed out her hair and gave it some newfound style.

We are still waiting for a transfer out of the NSCU, which is supposed to occur later this afternoon. The NSCU is short-staffed today and they are justifiably giving more attention to some of their other patients - some of them are in pretty rough shape and most are older or elderly. There is one guy whose head is practically entirely wrapped in gauze - poor fellow! Fortunately, Lacie's nurse today, Linda, is one of the better ones, and she has been in good hands while we wait.

Friday, December 5, 2008

Friday Night Lights

So, as you saw, Lace was feeling well enough to get online for a while and do a brief post as well as review all of your comments. My blogger account does not have permission to post the comments, so they've all been pending for a few days. Sorry about that!

Earlier today Lace was out of bed and walked around the room and out into the hallway just a bit with a walker. She did real well and probably could have gone further but they are being conservative with her because her sodium levels are still a little off and they want to get that corrected before going hog wild with the activity. Also, because her levels were still not where they want them to be, she will be spending tonight again in the NSCU. But we expected 2 days here from the beginning, so no worries. She continues to make good progress and is looking pretty chipper this evening. I am optimistic she will be out of the NSCU tomorrow and she will likely also lose her catheter then and be walking the halls. So, that is a preview of tomorrow.

Also, below are some pics of Lace. The shot of the back of her head is from the day after surgery when they changed her bandage dressings. The other two shots are from today and that is the ace bandage "turban" they've had her wearing all along. Kind of looks a little like Bert (from Sesame Street) meets I Dream of Jeannie with her hair tumbling out the top!!!


Just a quick post to let everyone know that John has been reading all of your wonderful comments to me and it's cheering me up a bit. I was incredibly sore and stiff this morning. Pain killers setting in so I had better sign off ~ more later, pressing on ~ Lace

Thursday, December 4, 2008

Wrapping Up Day 2

It's 9:30 p.m. and Lacie is tucked away sleeping next to me in the NSCU. Looks like the staff here has a pretty loose protocol on the visiting hours so I am planning on staying the night. There is a chair in the room that reclines, so it shouldn't be too bad and I hope to maybe get some shuteye myself.

All in all it was a pretty good day for Lacie. She was up out of bed twice and sitting up in the chair (now my chair!) for an hour or so each time. Also lots of neck stretching and massaging throughout the day. She's still not eating much but hope that picks up tomorrow. Nausea has not returned, so that is good. She's very tired as she apparently did not get much sleep last night in the noisy one-room PACU, so I expect her to sleep long and hard tonight.

Not much else to report. I did want to share an odd tidbit with you. I'm sure most of you have seen "When Harry Met Sally," which takes place in the NYC area. There is a scene where Harry is talking to Sally in bed and he mentions a certain cookie. Remember? Mallomars. As a pseudo-Texan, I had never heard of it. I even looked around for them in several upstate grocery stores some years ago and still seem to look for them in passing as the thought of the movie always makes me grin. Well, last night I was in a Long Island grocery store and lo and behold, there they were. And not just a few boxes, mind you, but an entire pyramid-style end cap display full of them! I couldn't help but chuckle a little. They are made by Nabisco, so I don't know why they are not more widely available. But according to Wikipedia, they are sold only in the colder months and likely in more northern regions for reasons so that they do not melt. For those of you who don't know, they are kind of a snobby version of a smore ~ graham cracker bottom, big dollop of marshmallow on top, and the entire thing is dipped in a chocolate shell. Sounds pretty good, huh? 

Good night, and enjoy your milk and cookies.

The Morning After

Sorry, but I did not get a chance to do another post last night. She looked good when we visited her in the PACU again from 7:30-8 p.m. After that we were told we could not see her again until she was transferred from there to the NSCU (NeuroScience Care Unit) the next morning. So we packed it up and went back to Variety House for the night. I had a couple errands to run for Lacie, picking up a special pillow and some drinks so I did not get "home" really until after 10 when I hurriedly made a few phone calls to family and scarfed some dinner before turning in.

We arrived at the NSCU at 10 a.m. when visiting hours "officially" start. She was pretty groggy and nauseous from the anesthesia when we arrived but that quickly improved. Dr. Verma visited us first and changed her dressings and showed us how to stretch, massage, etc. to increase her mobility. Dr. Kula came by shortly after that on rounds. He is the neurologist from TCI. He seemed pleased with how she was doing. They gave her something more for the nausea and that passed shortly thereafter. 

Around noontime they moved her out of the bed and she is now sitting up in a chair and getting more active. She is now working on an exciting lunch of Coke and cherry italian ice. 

All to report for now.

Wednesday, December 3, 2008

A visit to the PACU

FINALLY, at 5:30, they called us to the desk for a brief visit to see Lacie in recovery in the PACU. 10 hours after she went in for surgery. She looks great. She was asleep when we arrived but quietly talkative in a few moments and in good spirits, all considered. Compared to her last surgery, she really does look great. Last time she had a terrible allergic reaction to the tape they put on her face and that combined with her laying face down for the surgery, she was quite puffy for a couple days. But this time she is showing only a minimal amount of swelling so they must have done something different. She will be very happy about that come tomorrow. She can then spend more time fussing about her hair instead!

We will get one more visit tonight between 7:30-8, which is general visiting hours for the PACU. She will be staying there overnight (with no visitation allowed) and tomorrow morning she will be moved to a "step-down" room for the next two days which is a private room where she'll have more care than in the regular part of the hospital and we will get to see her as much as we want.

I'll give another update later this evening after the next visit.

For Lacie

Good news from John! We all continue to pull for Little Lacie, for a successful surgery and a full and speedy recovery.

I'm starting to get names and thoughts for Lacie on the "" email address. Thank you all! I started a group for Lacie in Facebook - if you have a facebook account - go join it!

Some have suggested hats or hooded sweatshirts. I think both are great ideas! Let me know if you are interested!

God Bless, and lets keep the good Lacie vibes coming!

Report from Dr. Milhorat

Good news, Dr. Milhorat just came out to the waiting area and spoke with Sandy and I about the surgery. The hard part of the surgery is now over and they are just finishing stitching her up. She should be out and ready to see in an hour or so.

The surgery went very well. They did not have to remove as much material as originally anticipated. In fact, they left her c2 pretty much intact, removing primarily a section of c1 and portion of the skull. he also cauterized the cerebellum tonsils a significant amount. All in all, he felt like her CSF flow from the spinal column to the brain has been very much improved and is very optimistic about her recovery. Thank God for these good blessings! And thank you everyone for your continued prayers!

There is still some concern about the cranial settling that is caused by her Ehlers-Danlohs Syndrome, but since her recent low bone density scan prevented her from having the spinal fusion done, all we can do is wait and see. It may be fine he said, only time will tell.

I will post another update around mid-afternoon after the surgerical procedures have officially ended and we have seen Lacie.

The long wait

So. Here we are. There's really not much news to post, but figured I owed y'all at least an update. Lacie is currently in surgery. We (Lacie, me and her mom Sandy) arrived at the hospital bright and early at 5:30 a.m. Surgery was scheduled to start at 7:30. Everything pretty much went to spec with the nurses shuffling Sandy and I out of the pre-op area at around 7:15 so they could get Lacie into motion.

We checked into the surgical waiting area and here we wait. The waiting room is really nice. Last year it was under construction so we were in an older space, but this year the new space is open and everything is comfy and new. Carpet. LCD TVs. Wireless. PC available. Free coffee. We were issued our pager at around 8 a.m. (they page you shortly before the doctor comes out to give you the update after surgery) and we went downstairs for some breakfast and a stretch of the legs.

Not much else to report other than we expect her to be out of surgery sometime around 2 p.m., so check back sometime shortly thereafter for an update. Keep those prayers a comin'! Compared to last time we were here, both Lacie and I were remarkably at ease with the situation when she went into surgery. Prayers are working. And we know she is in good hands.

Tuesday, December 2, 2008

Update from Lacie ~

The last couple of days have been a whirlwind! On Monday morning, I had about an hour of MRI’s followed by pre-op stuff at the hospital. In the afternoon I had a couple of appointments at TCI. I have been feeling the prayers ~ keep them coming. I am seriously humbled by the effect of prayer. I have felt totally at peace, no nerves what so ever. I am actually feeling a bit giddy ~ finally I have arrived for brain surgery and I am looking forward to getting this all behind me.

We were in and out of TCI in a record hour and a half ~seriously wonderful. After my nurse practitioner took my vitals she walked me in to meet with Dr. B. It was so nice to sit down with him and chat about my surgery. I really haven’t spoken with him since my initial visit back in May of 2006. He answered all my questions and outlined how the surgery would go. Seeing pics of my 3-D CT scan were really cool. Something Dr. B pointed out to me was that I have freakishly large C2 ~ can you see my shocked expression? Anyhoo, having this large C2 is a great advantage, because it will help hold my head up after the decompression. Dr. B decided to go ahead with the invasive cervical traction to see if I could benefit from the fusion in the future.

So, I was instructed to not have anything to eat or drink after midnight on Monday. When I got to the hospital at noon for my same day admission they couldn’t find my name on the list. After a couple of phone calls my docs were located and my procedure was confirmed for 1pm. As I was getting into my oh so stylish green hospital gowns the fire alarm went off. The nurse came over and said not to worry, there was smoke located in the building, but thankfully not in our area of the hospital. So, I walked down to the OR, when I got there they had discovered that the bed didn’t work and were in the process of switching it out. I answered a bunch of questions with the anethesiogist while he was putting my IV in. Once they were ready to go I got some Twilight put into my IV and I was unconscious for a couple of minutes. When I woke up they started putting weights on the traction unit. Basically I had two screws in my temples with a big bucket handle attached. It took about 25 lbs of weights before I felt any relief in my headache. So, that said, I have cervical cranial instability and would benefit from the fusion surgery at a later date.

Thanks so much for all of the e-mails and well wishes, I had no idea what a big fan club I have! John will keep you posted as the day progresses tomorrow and I will be back on line as soon as I can type. See you on the other side of decompression.

Monday, December 1, 2008

And... we're back!

Hi. John here. Just wanted to do a test post and make sure this is all working fine and dandy before the big surgery Wednesday.

Not much exciting news to report, which I guess is a good thing! We drove down yesterday afternoon and stopped and had a really nice lunch with Darla and Bobby, our new fellow Chiarians from the New Paltz area. Darla had her mini-PFD and spinal fusion about a month ago. She looks great and is doing so well ~ she is truly an inspiration to us. Her spirits are great and it is so invaluable to both Lacie and I to have found a new friendship in this strange but wonderful bond we have through the Chiari community. 

The traffic was utterly horrible on the way down. Note to self (and all readers!) - do not attempt to travel the NYS thruway south on the Sunday after Thanksgiving if it can be at all avoided. I think there were more license plates on the road from NJ, CT, & PA than NY! After getting off at Newburgh exit for our lunch get-together, we took a tip from Bobby and cut East on I-84 to I-684, which takes you down to some other highways that eventually patch you into I-278, which brings us into Brooklyn where we had a relaxing supper with the Dawsons, who were also kind enough to put us up for the night. Thanks to Bobby for the driving tips. Other than one bottleneck at the end of 684, it was pretty smooth sailing.

I'm currently in the Pre-Admission Testing area where Lacie is doing paperwork and other pre-op related stuff. We had the MRI earlier this morning. After this, we are off to check in at Variety House, then a quick lunch and over to TCI for an afternoon appointment. If history dictates, TCI will likely suck up the rest of the day like a nail in an expiring radial tire. Any of you who have been there before know that they always seem to be understaffed and behind in the daily schedule. I think we waited over 3 hours there the first time. But it is worth the wait, and we thank God that He has led us there.