Saturday, December 06, 2008

Got one...

Brain surgery means Christmas in Albuquerque for Carlsbad girl
From the Current-Argus

For one Carlsbad girl, Christmas this year won't be celebrated at home.

Keely Lujan, 12, will be spending her Christmas in an Albuquerque hospital following a four-day brain surgery scheduled to begin on Dec. 15.

This fall, Keely was diagnosed with an arterial vascular malformation (AVM), which is a congenital disorder of abnormal connections between arteries and veins in the brain and a lesion, which is an injury or pathological change in tissue in the brain.

Keely, a.k.a. "Keester," is a sixth-grade honor student at Alta Vista Middle School and an avid softball athlete. Earlier this year, out of the blue, she experienced temporary loss of peripheral vision in her right eye. A month later, she experienced the same vision loss but this time it was accompanied by a severe headache.

"I thought she was getting migraines so I took her to the doctor," said her mother, Amanda.

The episodes continued through the summer.

Keely's local doctor told the family she would have to see a neurosurgeon. He ordered an MRI (magnetic resonance imaging) and blood work and those test results were taken to her neurosurgeon appointment at the University of New Mexico.

For more on this story check this Web site later or look for the Sunday Living section in this Sunday's edition of the Current-Argus.
I got nothing else....

Friday, December 05, 2008

Got to do it...

Phil Collins - Against All Odds
I know she will never look at this.... but I have to.

Well nothing to say...

Good news for AVM suffers.
Bad news for me...
There have been no avm posts. Yeeee haaaa!
okay what do I do in slow times?
That's right....
youtube... gets posted.

Good nuff!

Tuesday, December 02, 2008

AVM News! and a bit of me too.



Update on Katherine Wolf by Jay Wolf (Her Father-in-law)

Jason and Katherine met with Dr. Gonzalez at UCLA for her 6 month check up. The visit prompted Jason to provide a recap of their faith walk through these perilous experiences. Let's keep praying, cheering and learning because we are on the front row of God's miracle!

Dear friends,
Last week, we had the privilege of meeting with Katherine's attending neurosurgeon, Dr. Nestor Gonzalez. We spent the night at Katherine's mom's apartment in Westwood on Wednesday night, and then walked over to Dr. Gonzalez's office at UCLA at 8am on Thursday morning. Katherine's grandmother, Amanda, also happened to be in town, so she and Kim joined us at the visit. This appointment served as a 6-month follow-up to Katherine's surgery on April 21, as well as a time to discuss some specifics about what happened that day.
Dr. Gonzalez has naturally become a very special person in our lives, not just because of the huge role he played in saving Katherine's life (though he gives God the credit for it) but also because of how Katherine's surgery and recovery have deeply affected him. As our visit began, we all embraced then sat around the exam room as Dr. Gonzalez began to lovingly explain to Katherine the details of her surgery.

Katherine's path first crossed with Dr. Gonzalez at the UCLA Westwood Emergency Room. Katherine was originally taken from our Pepperdine apartment to UCLA Santa Monica. There they performed a CT scan which showed a huge bleed in her brain. After stabilizing her there, she was immediately sent to the much more specialized unit of Neurosurgery at UCLA Westwood. At the time, we did not even realize that UCLA is considered one of the top hospitals in the country (#3 according to US News & World Reports) and is a world leader in the treatment of vascular brain injuries and stroke. Though we didn't know it when we first moved to LA, one of the major reasons God brought us out here was to be close to UCLA and to Dr. Gonzalez. Isn't it beautiful to look back at life and see the Lord's hand working in ways that we never expected.

When Katherine arrived at UCLA Westwood's Emergency Room, a procedure was done to release the incredible pressure that was building up in her brain. Then, an angiogram (the first of around 10) was performed by Dr. Gonzalez which revealed the cause of the bleed--a massive AVM in her cerebellum. One of the most disconcerting findings of the angiogram was that the very high intracranial pressure had created a major herniation in the tonsils of Katherine's cerebellum. In other words, the pressure from the bleeding was causing several inches of Katherine's cerebellum to be pushed down through her spine. Almost always, this type of herniation very soon after leads to the person's death.

Dr. Gonzalez recounted that months after Katherine's surgery he presented her case to a group of UCLA doctors as a teaching, case study. He showed the CT scans and presented her stats from that day in the emergency room. He then asked his neurosurgery colleagues if they would proceed with the surgery, based on the given facts. The majority of the UCLA neurosurgeons said that they would NOT have chosen to do Katherine's surgery because of the herniation, massive bleeding, location/size/complexity of the AVM, and extreme likelihood of death or persistent vegetative state. The mood was somber because of the bleak prognosis for this anonymous patient, but spontaneous applause broke out when Dr. Gonzalez finished the presentation by explaining that not only did Katherine survive the surgery, but she had recovered so well that she was on her way to rehab. He said that in all of his years at UCLA, Katherine's case study was the first to receive applause.

We have always been so grateful to have been at a teaching hospital like UCLA that would take on more difficult surgeries like Katherine's. It seems that Katherine's case was even too much for UCLA, but thankfully Dr. Gonzalez was on-call and said that in his gut, he knew that he had to attempt her surgery. A resident in the ER even told him that the patient's husband was an attorney, which was a big negative in his decision to operate. In his words, he was also tormented by the fact that Katherine might not just die but could also very likely be subjected to the living hell of a persistent vegetative state or locked-in syndrome ("The Diving Bell and the Butterfly"). Despite the horrible odds and exposing himself to major liability, Dr. Gonzalez felt that both Katherine (though non-responsive at the time) and I seemed to be calmly and confidently delivering her life into his hands. He proceeded with the surgery.
Katherine was very close to death by the time she entered the Operating Room. A craniectomy was performed, removing the back right portion of her skull, as well as a laminectomy, removing several of her top vertebral bones to give her swelling brain a little more room to expand. The AVM took up over half of her cerebellum and was interwoven with many aneurysms. The bleeding had formed a large hematoma in the middle of that part of her brain, near her brain stem. The first half of the surgery went to the removal of the AVM and with it, over half of her cerebellum. Also, the collection of blood (hematoma) that had formed near her brainstem had to be removed, which required cutting through part of her brain to get to it. This portion of the surgery involved a lot of bleeding, so much so that Katherine's full blood volume was replaced 5 times (that day, Katherine used 10% of all the blood used at UCLA). The second half was dedicated to microscopically removing any possible remnant of the AVM from her brain stem and intracranial nerves. In order to save her life and prevent any future bleeds, Dr. Gonzalez had to inflict some damage on her intracranial nerves; though he said that only the 7th intracranial nerve (to the face) was cut because the AVM was literally wrapped around it. The 8th intracranial nerve (auditory) runs right next to the 7th, which explains the deafness in Katherine's right ear. The intracranial nerves are hair-like and have the consistency of butter, so any disruption or heat near them can cause damage, which is why the full extent of that damage is sort of unknown. Most of the end of the surgery involved the brain stem, where any amount of damage could have surely killed her as the brainstem controls the heart beat and breathing. At the end of this incredibly complex surgery, Dr. Gonzalez was shocked to see that 16 hours had passed. He knew that Katherine was alive, but he was not certain of any other outcomes.
BUT something very special happened less than 24 hours after Katherine's surgery. Dr. Gonzalez was awakened by an excited ICU nurse. Katherine had responded to commands and slightly moved the fingers on both hands and wiggled her toes. He rushed over to Katherine's bedside where he asked Katherine to squeeze his hands, which she did. This was beyond miraculous to the neurosurgery team and to Dr. Gonzalez who thought that not only would Katherine likely be in a coma, brain dead, or paralyzed, but that she would definitely be under for several days after her surgery. It was a moment that we would never forget, and neither would he. This was just the first miracle in Katherine's long road to recovery at UCLA and a gracious glimmer of hope from the Lord.
In the coming weeks in ICU and beyond, Katherine embodied innumerable miracles but also faced many, many obstacles, such as vasospasms, pneumonia, infection of the ventriculostomy tube coming out of her brain, weaning from the ventilator, high fever, etc. Dr. Gonzalez was quick to point out that despite all of these issues; Katherine was blessed enough to not have any new bleeding or any further brain damage beyond what occurred in the initial surgery. An angiogram soon after her surgery revealed that the AVM was entirely gone.
Dr. Gonzalez says that he cannot give Katherine a prognosis on her recovery because thus far, she has disproved every prognosis he has given her. He feels that in time, Katherine will be able to make a wonderful recovery. Katherine's AVM was the largest AVM Dr. Gonzalez had ever seen, in the worst possible location, with the worst type of blood drainage. To see her sitting in his office 6 months after the surgery, talking about her baby's 1 year old birthday, has to give Dr. Gonzalez such a huge boost. He put himself on the line when he took on her surgery, and this time, it paid off immensely.

Our appointment ended with a silently, tearful embrace between Katherine and Dr. Gonzalez. This man has saved Katherine's life, but in some ways, Katherine has also saved his. He has told us several times that experiencing a case like Katherine's has pointed him to the Lord because what has happened with her can only be attributed to the Lord's intervention. It's a rare occasion in life when you get to thank another person who has literally saved your life. It's even rarer when that person gives the Lord all the credit. I ask for your prayers over this amazing man. He is truly an instrument in the hand of God being used to change so many people's lives.

Many times the slow pace of Katherine's recovery is so disheartening, but as we are able to revisit the beginning hours and days of this new life, we are given such encouragement. The simple truth is that Katherine should not be here today. As we are reminded how far Katherine has come, we know that no matter what hard days are ahead, undoubtedly that hardest one is already over, the victory has already been won. The God that has conquered death is the same God that remains now and continues to restore us back to life.

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." (Ephesians 3:20-21)

God Bless,
Jay Wolf III
Go stop by... (click the from)

I work today... I need a sale! So pray for me....
I know that it ain't the best time to buy a hot tub... We got snow on the ground and delivery is a bit of a bitch. And the economy is bad. (real bad)

Okay, I've got to go.... have a happy day.
buy something.



Sunday, November 30, 2008

AVM News

My Daughter's Cerebral AVM--Osler Weber Rendu (HHT)

Usually I just post pictures with a little information about them, today I'm feeling a little more serious and thankful. One year ago my daughter, then 6, had surgery to remove a cerebral AVM. It's a really long story...but we had her screened because she has Osler Weber Rendu. It's a good thing we did. Her AVM was in the left frontal lobe in her speech area. I guess I'm hoping that if you're out there searching the internet, like I did, for others who have been through this maybe you'll happen upon my blog. We are one of the lucky ones. Emalyn's AVM was found and fixed. Usually you don't know until something happens. There are other options to surgery--gamma knife and glue. It's strange but the decision on what to do was left to us. It was a very hard decision but her surgery could not have gone any better. We went to Phoenix to the Barrow's Neurological Institute, what a wonderful group of doctors and nurses. Dr. Spetzler performed Emalyn's surgery. The grading scale for AVMs is named after him. It is the Spetzler-Martin grading scale. Here we are one year later with a very healthy, happy, bright and loving little girl, I'm so very thankful.
Pay him a visit...
My Day so far...
Day after Work.... Booo It seems that I don't get good ups... or could it be i CAN'T SELL.
I only had 1 up... but it was a two-legged one. I did not work on a be-back... I tried to close them while they were their. (but honestly when they left I thought they would be back.)
So far a have had 3 ups... I sold one tub. That's 30% it has to be a larger number. And it is becoming Holiday season. Holiday season is crap when it comes to Spa sales.

Oh well.... Time to go...
Be good,