Epilepsy

Meeting The Reason Part 2: Cavernous Angioma

The brain. The human brain is one of the body’s largest organs, consisting of some 100 billion nerve cells that not only put together thoughts and highly coordinated physical actions but regulate our unconscious body processes, such as digestion and breathing. Weighing at 3 lbs., the cerebrum is the largest part of the brain and makes up 85% of the brain’s weight.

When a seizure occurs in the brain, the electrical system of the brain malfunctions. Instead of discharging electrical energy in a controlled manner, the brain cells keep firing. The result may be a surge of energy through the brain, causing unconsciousness and contractions of the muscles.

If only part of the brain is affected, it may cloud awareness, block normal communication, and produce a variety of undirected, uncontrolled, unorganized movements.

Involving an epilepsy diagnosis, most of the time the cause is unknown.

Involving my epilepsy diagnosis, the cause is in fact known. It is the result of what is known by many names. (Cavernous Angioma, Cavernoma, Cavernous Malformation, Cavernous Hemangioma, CCM)

The doctors I’ve met, favor the name Cavernous Angioma.

TiffBrain

(Above, is a photograph of my brain, indicating the location of my Cavernous Angioma. The markers indicate a grayish circular color which is a dried spot of blood on my brain.)

A Cavernous Angioma is an abnormal tangle of vein-like structures. These malformations have the potential to leak blood, leading to bleeding in the brain (hemorrhage). This can cause neurological symptoms, depending on the location of the cavernous angioma. Symptoms can include weakness or numbness in the face, arm or leg, unsteadiness, vision loss or double vision, and difficulties speaking or swallowing. Seizures are also a threat. Cerebral cavernous angiomas affect about 0.5 percent of the population worldwide.

In some instances, surgery can be an option to resolve the problem. In my case, due to the location of the Cavernous Angioma, surgery is not an option. Surgery would only lead to additional problems. It will be with me for the duration of my life. Epilepsy will also be with me for the duration of my life. Its my hope and prayer that as medicine advances, that options will become available to me and others in similar situations. Unaware of what the future holds, I have found some comfort in knowing that I’ve met the reason for my Epilepsy.

I am one of many reasons for Epilepsy diagnoses. All of us united, are on one journey. Seeking a cure for this condition that links us. United as one force backed by determination to never give up and all who love us cheering us on as we take this journey.

Fight on.

 

I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!

2 Comments

  • Eileen Hoowell

    Thanks for sharing.
    It is always good to learn more.
    Someone may learn something that may help
    them with there epilepsy that
    is why I feel we need to stick together!
    my facebook friends have taught me more than
    I have known in the past and I keep learning, a good thing!
    Eileen

  • Jo Lord

    Hi Tiff, I was so happy to receive a diagnosis and subsequent reason for my simple partial seizures and first tonic clonic when I was 19 in 1987 when the first MRI machine arrived in Australia. It has been a life of ups and downs with more and more CCMs discovered during each MRI I had. The doctors were never certain if the additional ones were found as a result of improved technology over the years or if the seizures were causing the formation of them. In 2004 one of my sons who was 12 at the time, became quite sick with morning vomiting, headaches and lots of sleeping. After 3 weeks and 3 visits to the Dr I refused to leave the surgery without a referral for a cat scan. Praise God we got in immediately and Jonathan was diagnosed with a blockage caused by a Ccm bleed and his csf (brain fluid) could not leave his brain through the usual route via the spinal cord. The Drs were not sure exactly what it was but after looking at the scan I was able to tell them it was a Ccm. I had been told that it was a possibility I would pass them on to any children because I had multiple angiomas. Jonathan and I were flown to royal children’s hospital in Melbourne that day. My boy was so ill that day, I thought I was going to lose him. They put a drain in his brain and 2 days later performed a third venticulostomy which is putting a hole in the third ventricle of his brain to allow the csf to escape. They could not reach the blockage as it was too deep in the brain. Jonathan is now 22 and has had no further issues with his Ccm. As you say 0.5% of the population have them but only 30% of those people ever have any issues. After Jonathan’s diagnosis I decided to have my other 3 children checked via MRI. My 3 boys all have multiple CCMs and my daughter is free of them. I researched and found Duke University in CA was doing a study of families with multiple CCMs. I contacted them to become part of their study. They sent me a blood collection kit and my four kids and I had our blood sent to the university. The boys and I all have a mutation on our DNA and my daughter does not. It is so interesting. I pray that my other two boys will never develop any symptoms. I have since had surgery myself but that is a story for another time as it is now 215am here!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.