Home
Welcome to the Spinal Cord Cavernoma Support Group!
What is spinal cavernoma?
Cavernous malformations, commonly known as “cavernomas”, are abnormally formed blood vessels that can potentially lead to leakage of blood. These cavernomas are commonly found in the brain, but in the case of spinal cavernoma, appear in the spinal cord.
What are the potential causes of spinal cord cavernoma?
In most cases, cavernomas develop sporadically, without any true reason behind them. In some instances, however, they can be caused by specific chromosomes that were genetically inherited from one’s parents.
How can spinal cavernoma be detected?
Overall, the best way to detect spinal cavernoma is through the use of an MRI. In general, the two must successful types of MRI are the regular T2 and the gradient echo MRI.
How are cavernomas typically treated?
The most common treatment for cavernomas is surgery. Any cavernoma, whether it occurs in the brain or spinal cord, should be considered for removal by surgery if it is at all symptomatic and relatively accessible.
How common is spinal cord cavernoma?
Spinal cavernoma is an incredibly rare condition. On average, only .1-.5% of the general population suffer from any form of cavernomas, and even less occur in the spine.
My journey with a spinal cord cavernoma began in February 2009. I remember it well as we had just gotten back from a great vacation in Maui. It began as a very mild feeling of irritation under my arm. I thought it was nothing but a rash. I went to my regular doctor and asked her to give me a salve for my irritation. She looked under my arm and saw nothing. Thus began two years of mysterious symptoms. The “irriatation” began to feel worse. The pain extended to my back and down my arm. I went to my chiropractor. He had always helped me in the past. After several months nothing changed. Then I had occurrences of very high blood pressure. I had never had a problem with my blood pressure. I was put on many medications which did control my pressure but had side effects. The next symptom was numbness around my waist in my back. Finally, after prayer and asking for guidance I found a wonderful neurologist who sent me for a MRI of my spine. They found a cavernoma in the cervical area of my spine. I was relieved that I wasn’t crazy. All of these symptoms really had a cause. Then began the search for a surgeon. We went for three opinions and finally found a doctor at Rush University who had experience with cavernomas. I had my surgery on Jan. 6, 2010. I’m still recovering. I can walk without a walker or a cane, but I have numbness from under my chest down to my legs. I’m in the process of taking acupuncture treatments once a week and taking Chinese herbs. I’m having alot of movements in my legs and upper body. They tell me this means that the nerves are alive and responding.
I’d love to hear from any of you who have this condition. How are you doing? What is working for you? I believe that if we share our experiences, strength, and hope with each other, that we can all recover faster and better. Since this is a rare condition, perhaps we can add some knowledge that the doctors do not have.
I’m sending you all hope, peace, and joy in your lives.
– Myrna, Chicago
Do you suffer from spinal cavernoma?
If so, you are not alone. Many people suffer from this condition, and to learn how others are coping, please be sure to
in the forum.