Friday, October 31, 2008

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A Patient's Guide To Brain AVMs

If you or a loved one has recently been diagnosed with an arteriovenous malformation (AVM) of the brain, it can be a stressful and confusing time. You, as well as other family and friends, may have concerns about what the diagnosis means for the patient's long-term health and whether treatment is possible. To help alleviate these anxieties, this article provides answers to common questions about brain AVM.

What is an AVM of the brain?

An AVM of the brain (also known as a cerebral AVM) is a disorder of the body's circulatory system. AVMs occur when an intricate tangle of blood vessels directly diverts blood from the arteries to the veins. Though localized in the brain, cerebral AVMs can lead to severe neurological problems. Left untreated, a cerebral AVM can cause severe hemorrhaging, which may lead to serious complications or death.

How common are cerebral AVMs?

It is estimated that an AVM of the brain occurs in approximately 1 in every 200 to 500 people (less than one percent of the general population). Cerebral AVMs are commonly misdiagnosed, with most cases found only incidentally through the performance of CT (computed tomography) and/or MRI scans on the brain. Patients often complain of regular headaches and seizures before diagnosis.

Other neurological complications can develop including speech and visual difficulty, dizziness, memory deficits, confusion, hallucinations, dementia and difficulty with event planning. Physical side effects range from loss of coordination, numbness, tingling and spontaneous pain to permanent paralysis. Patients' symptoms may be directly associated with the location of the cerebral AVM with certain sites causing hydrocephalus. Hydrocephalus is caused by a cerebral AVM preventing the circulation of cerebrospinal fluid thereby causing fluid build-up in the skull.

How is an AVM of the brain diagnosed?

Brain AVMs can be diagnosed using a few methods, with the most non-invasive techniques being CT and MRI scans. Both scans reveal lesions while CT scans are particularly helpful in showing hemorrhaging. Three dimensional representations of cerebral AVMs can be detected by CT and MRI imaging.

A more intricate process in identifying an AVM of the brain involves angiography. A contrast agent, or water-soluble dye, is injected into the brain allowing an x-ray to deliver more precise images that highlight blood vessel structure.

How can brain AVMs be treated?

Brain AVMs can be difficult to treat and often require a multidisciplinary approach to therapy. The method of treatment performed should be thoroughly evaluated with the surgeon identifying the best option on a case-by-case basis.

Endovascular embolization is a minimally-invasive treatment option for cerebral AVM that involves the intentional closing of blood vessels. It may be done as the sole form of treatment or in preparation for microsurgical resection or radiation therapy. For patients with cerebral AVMs that cannot be cured due to the size or location of their lesion, embolization can be palliative. This means that the procedure is not a cure, but rather offers an improvement to the patient's quality of life by diminishing symptoms such as headaches, seizures or other problems.

If you'd like to learn more about treatment options for cerebral AVM and other vascular disorders of the brain, please visit:

Written By: R.L. Fielding
R.L. Fieldeing is a freelance writer who has written on a wide variety of topics, with special expertise in the education, pharmaceutical and healthcare, financial service and manufacturing industries.

Disclaimer: This article is for informational purposes and should not be considered a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any question you may have regarding a medical condition.

About the Center for Endovascular Surgery

The Center for Endovascular Surgery is a division of Beth Israel's Hyman-Newman Institute for Neurology and Neurosurgery (INN). The Center for Endovascular Surgery is a world leader in using minimally invasive techniques to treat vascular disorders throughout the body, including AVM , hemangiomas and cerebral hemorrhages.

Center for Endovascular Surgery

A Note from Jay

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, 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 hosptials 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 vegitative 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 invovled 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 innumberable 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 more rare 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 disenheartening, 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, undoubtably 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,



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Anonymous said...

I hate you

DelorumRex said...

so do I....