Our Journey through Arnold Chiari malformation surgery and the unknowns we faced and dealt with.
Friday, July 31, 2009
Photos Finally!!
"My Neck Hurts"
Lunch for David has been ice chips with a topping of ice chips. It seems he has a new favorite food as well!
We are still looking at spending the night in ICU before moving into a room for another few days. I was hoping to post a picture, I will add it soon.
Recovery
It appears that medication has made him a little nauseated, but he is moving his legs and arms which is good news. It will be another hour or so before they take him to ICU where we can see him.
Almost Finished
No News is Good News
First update
Now We Wait!
After changing into the 'comfortable' hospital gown he decided he needed to use the restroom so he had a funny little sideways walk down the hall holding his gown. The nurse assured him that was the last time he would need to do that for a while because they will be putting in a catheter once he goes to sleep. I am sure you can imagine how happy that made him!!
They wheeled him into the room for anesthesia at 6:30 am and surgery started at 7. I am in the waiting room doing what people do in there.....waiting! Waiting for the promised update which should come around 8:30. As soon as I get it I will update the blog. Until then, you get to wait with me.
Thursday, July 30, 2009
Count Down
From what we understand the surgery will last anywhere from 4 to 6 hours. They are supposed to come out and give me an update after an hour and a half. I will update the blog as soon as I know anything!
Please keep him in your prayers.
Sporty New Jewelry
He was able to charm the lady at the hospital out of a little bit of information. We learned that he will be either the first or second surgery of the day which means we will be at the hospital tomorrow at either 5:30 am or 7:30 am. Sounds like a night without much sleep and with a lot of apprehension. They also said that he will be in the hospital for 3-7 days depending on how things go. We are planning on 3!
So many of you have shared your love and concern and offered to assist us in so many ways that I can't keep track. Thank you all so much for everything!
Wednesday, July 29, 2009
What does the doctor have to say?
"I have explained to David that I would recommend surgery to do a suboccipital craniectomy, a C1 laminectomy and a dural graft to see if we could get more room for the spinal cord to circulate at the cranial cervical junction, and thus reduce the likelihood of the syringomelia getting larger. It is not a 100% chance, but it gives him the best chance we have got, and this is what most doctors would recommend. Why? Because if the syrinx just continues to get bigger, it is going to cause numbness, disassociation of temperature and weakness, and ultimately paralysis. The goal is to try to divert some of that fluid around the spinal cord instead of through the spinal cord, and hopefully that dilation and fluid-filled space might collapse down, or at best, not get bigger. Sometimes they continue to get larger and you have to do a shunting procedure to try to reduce spinal fluid pressure."
What does that mean? They are going to make the opening at the base of the skull larger by 1 cm. They will also use some of the lining of David's skull to create a sling to support the cerebellum as well as to create a patch which will hopefully allow the cerebro spinal fluid (csf) to circulate normally.
We do not know what time surgery will be on Friday. The hospital will call us Thursday afternoon and let us know, so until then we wait.....
In the meantime, Minnie is home and resting. Her surgery went well and we hope she will soon be barking at the doorbell again.
Monday, July 27, 2009
Surgery anyone?
Sunday, July 26, 2009
Now that's a haircut!
Yesterday, my sister Darla took it down to the scalp before heading back to Ohio. David wanted to have his hair cut prior to surgery so he didn't have a reverse mohawk shave.
Thanks to Mike and Darla for using their expertise to help us ease into this new 'do'.
Finding Chiari
David had a continual ring in one of his ears for nearly two months and after this length of time, he could stand it no longer and decided to go see the doctor. Upon inspecting his ears he could find nothing wrong and David was referred to an Ear Nose and Throat Specialist (ENT).
Again there was nothing wrong with his ears to identify what could be causing the ringing. After much deliberation, the ENT decided to send David in for an MRI to eliminate the chance that a small tumor in the brain was putting pressure on the nerves and causing the ringing.
The MRI came back and the phone call from the ENT revealed good news and bad. There was no tumor, in fact his ears looked very healthy. However, there was something called an Arnold Chiari Malformation identified at the very bottom of the MRI. This means that the cerebellum was formed with a segment at the bottom which grows out of the base of the skull and puts pressure on the spinal cord. This pressure had, over time, created a syrinx in his spinal cord. A Syrinx is a fluid-filled opening in the center of the spinal cord where Cerebro-spinal fluid (CSF) had been forced to collect or pool as it tried to find an alternate path around the spinal cord due to the cerebellum putting pressure and blocking the flow of fluid.
After a visit with the Neurosurgeon and a follow-up MRI, surgery has been scheduled. There has been limited information given on what the recovery from surgery will be like and from all the postings we have found, recovery differs greatly from patient to patient.
We feel extremely blessed that David has not experienced any loss of motor function. Any damage to the spinal cord has the potential to cause paralysis. We were told by the neurosurgeon that the damaged area in David's spinal cord would cause paralysis to his organs and breathing function. Once you get this news you really realize how fragile the human body is and come to a quick understanding that the Lord is truly in charge.
Our intentions for creating this blog is to allow family and friends to stay informed on David's recovery as well as to provide information for those coming behind who may have the same questions we have. Today is Sunday and surgery is scheduled for Friday, July 31st 2009. This week we are trying to keep busy to keep our minds from running away with us.
It is not hard to keep busy this time of year. School shopping and preparing our home for an exchange student and church activities are all welcome distractions.
Thanks to all of you for your prayers and support. I will begin updating this blog daily later on in the week!