Cavernous Malformations:
Patti's Ongoing Journey

by Patti G.
(White City, OR, USA)

My journey with cavernous malformations, CM's throughout my brain began in 1987 when I presented with a first-time generalized seizure secondary to a brain hemorrhage from a CM.

Cavernous malformations also known as cavernous angiomas, are malformed thin-walled blood vessels and resemble a raspberry. While estimates vary, it is estimated 1 out of every 100 – 300 people will present with cavernous malformations, with symptoms of seizures, stroke-like symptoms, headaches and hemorrhages, often referred to as bleeds.

CM's are in the same vascular malformation “family” as the arteriovenous malformation, AVM, which affected S. Dakota Senator Tim Johnson and Jill Bolte-Taylor, Neuroanatomist and author, “My Stroke of Insight.” While different in structure, CM's and AVM's have a tendency to bleed, or hemorrhage. Once these lesions bleed, they will most likely bleed again.
 
Between 1987 and 2010 I have had 4 bleeds requiring surgery in various locations of my brain. My recent surgery of 3/9/10 was in my right thalamus (on top of brainstem). Because of the deep eloquent location, involvement and bleeding of this thalamic CM, I have met greater challenges throughout my recovery, including 2 weeks in rehab relearning to walk with a cane and coping with numbness and unusual sensations on my left side. All things considered, I am doing quite well, though recovery is an ongoing process requiring patience with myself and self reminders of accomplishments I have made in regaining the abilities to perform 'simple tasks' that are taken for granted when healthy and able bodied.
 
Neurosurgeons specializing in the treatment of CM's and AVM's are in a subspecialty within the specialty of neurosurgery and it is not uncommon for patients to go outside their geographical area as I have done for treatment @ Stanford University Medical Center, Stanford, CA.

Presently, surgery is the only treatment for cavernous malformations.

Because I have multiple CM's remaining throughout my brain which are considered familial, I will always be at risk for another bleed and require annual MRI's to be reviewed by my doctors.

CM's are among the unknown cerebrovascular disorders to the general public and many medical communities. As a 51 yr. old survivor of this often devastating and disabling disorder, I can only hope for more research, awareness and future treatment options, and try to live my life to the fullest. Doing the best I can within my limits one day at a time with my loving, supportive husband by my side.

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Patti's Ongoing Journey

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Jan 26, 2013
 To Carol & Family
by: Patti

Carol,
My heart goes out to you, your husband & family for all the changes that have come from CM's.
The brain is ever-changing & with time & possibly w/ assistance from good PT & OT, he may regain some of what he's lost.
Never give up hope!
Have you visited Angioma Alliance or AVM Survivors?
Take care & best wishes,
Patti
May 17, 2012
 LIFE CHANGING. BUT HOPEFUL
by: CAROL

MY HUSBAND DAVID HAD HIS FIRST BLEED IN 2009 AND WE LEARNED ABOUT CAVERNOUS MALFORMATIONS. HE RECOVERED IN EIGHT MONTHS AND LIFE WAS BACK TO NORMAL (ALMOST) IN AUGUST OF 2011 HE STARTED HAVING SYMPTOMS AGAIN AND AT THAT TIME THEY SAID IT HAD GROWN. IN FEBRUARY OF THIS YEAR HE AWOKE LOOKING AS IF HE HAD HAD A STROKE OFF TO BARNES WE WENT WERE WE LEARNED HE HAD BLED AND NEEDED SURGERY. HIS WAS LOCATED IN THE PONS AREA OF THE BRAIN STEM. ON FEBRUARY 15TH HE HAD AN 8 HOUR SURGERY AND OUR LIVES CHANGED. HE CAME OUT OF SURGERY WITH DOUBLE VISION, SLURRED SPEECH, UNABLE TO USE RIGHT SIDE LEG AND ARM. WE STAYED IN ICU FOR A WEEK THEN REHAB FOR 3 WEEKS AND THEN WE BROUGHT HIM HOME FOR ME AND MY SON TO TAKE CARE OF AND TO CONTINUE OUT PATIENT THERAPHY. THE BIGGEST PROBLEM HAS BEEN THE MOODS ANGRY, UPSET MOST OF THE TIME. VERY HARD TO HANDLE. SOME DAYS I FEEL I WILL NEVER SEE MY HUSBAND AS HE WAS BEFORE THIS AGAIN. DOES ANYONE HAVE ANY HOPE FOR ME?
Aug 05, 2011
 my son was diagnosed with a cavernoma malformation
by: Amie

My son was diagnosed with a cavernoma malformation when he was 4 months old. It actually was a complete accident and blessing that we found it. Our 11 year old was carrying him and she tripped and they both fell. She tried to cradle his head but he did hit it on the tile. After a while, I decided to take him to the hospital just "to be safe" . They did a catscan and X-ray and said he had a minor skull fracture and a bleed on his brain. They transported him to a trama hospital in our area and he was released from the icu two days later, as he had no complications. We had a followup catscan a month later and we were told by the neurosurgeon that it did not look like a bleed as it had not changed size or shape. He recommended that we see a pediatric neurologist and have an MRI. Long story short, it took us another 4 months to get a diagnosis as none of the doctors that we went to had ever seen this before. We finally found a doctor at Miami children's who has seen this and were given the diagnosis of a cavernoma malformation.

We had 2 MRI's done there and it didn't look as if there were any significant bleeds. When we first saw the doctor, he seemed a little more aggressive with treatment than when we saw him the second time. We decided to take him to children's hospital of Philadelphia and saw a doctor there that wants to do the surgery around the age of 2. (He actually will be 2 next month) the cavernoma is on his right temporal lobe, which is not the "best" place for it to be. He has had no symptoms from this so far, thank God. The doctor did recommend that we get genetic testing done to see if it is genetic, which would only.complicate matters more for our son, as well as our 2 older kids, one of whom is 7 and suffers from migraines. There are only a hand full of places in Florida that do genetic testing and our insurance does not cover half of them, so we currently are on a waiting list for one of the hospitals for the testing.

This has been such a long road so far, and I am sure an even longer road ahead. We have some difficult decisions to make, given the fact that he has not presented any symptoms, do we take the risk with surgery to protect him from ever having any symptoms, hopefully? Do we wait and monitor it, but have him live a restricted life? If we do have the surgery he is young enough that he wont remember, and if he loses anything, it may not be as difficult for him to re-learn? This is the toughest decision we have ever had to make. We received 2 different opinions from the only Dr's we found that had even seen this before in a child his age. We have never met anyone who has had this condition, so I was hoping to find a forum/blog to discuss this with people who are familiar. Any info/advice, anything would be helpful...

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