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Living with Cavernous Angioma

International Cavernous Angioma Awareness Month has ended, but not your stories. We encourage you to send us your own at stories@angioma.org 

You can read more of our member stories by clicking here.

 

 

Lindsey Beck

“I can do all things through Christ who strengthen me.”  This verse has been my life motto since kindergarten when we recited it  each day before class started.  I graciously owe it to my teacher for instilling this in me as I never thought I would rely on it so much.  

I was twenty five when my journey to being diagnosed with cavernous angioma started.  It took multiple trips to my primary care doctor, urgent care, the emergency room, a neurologist and a neurosurgeon to finally solve the unknown.  I originally went in for numbness in my fingers and was told I simply had a pinched nerve and I should get a massage.  Months later I had incredible pain around my entire torso to the point I didn’t even want to dress or move.  I started to get weak in my legs and noticed more numbness.  The pain became unbearable and felt like my skin was raw with blisters.   MS was suggested as well as simply being told nothing was wrong as I was sent home with narcotics for the pain.  It became incredibly frustrating as I knew something was not right.  An MRI was finally taken and I was diagnosed with a cavernous hemangioma in my spinal cord at C3 and C4 with a second small lesion in the thoracic region of my spinal cord.  

I went in for immediate surgery to remove the lesion at C3 and C4 with the expectation that I may never walk again.  I spent 4 weeks in the hospital and was discharged to a year of full time physical therapy and occupational therapy.  In some ways, I feel stronger than ever as I push myself to improve with each day, month and year.  I still cannot feel the entire right side of my body and struggle with fine motor skills, pain and weakness in my left side.  But with all this said, I consider myself a miracle.  Yes, each day has its ups and downs of the unknown and fear of another bleed but I have beaten the odds of my prognosis and will be WALKING down the aisle at my own wedding this August.  

You can check out more of my story here:

Dance Coach Refuses to Let Medical Condition Keep Her From Her Team

 

 

 

Kristen Rentz Lewis

When I was nine months pregnant with my second child, my feet went numb.  The doctors were confident that the baby was pressing on a nerve and that once she was born, my symptoms would disappear.  But days after delivery I had lost nearly all function from the waist down.  I was nursing my baby girl as a neurologist pointed to my MRI image and said “tumors, operate and radiation.”  I felt hollow as the doctor spoke, thinking I would soon be leaving this world and my husband, infant and three year old son.  

We left that doctor’s office and went immediately to the emergency room where I was to be admitted and where the words “cavernous angioma” were uttered for the first time.  I was fortunate to have a surgeon that was familiar with the illness and took time to explain it to us, but all I heard was “not cancer.”  I would have a chance at life.  I had emergency surgery to remove a hemorrhaging lesion from my spinal cord and after extensive physical therapy I recovered nearly all of my motor function. I am left with extensive sensory damage and neuropathic pain but I am alive and I couldn’t be more grateful.   Subsequent genetic testing revealed that CCM1 is responsible for the multiple lesions remaining in my brain and brainstem.  

 I didn’t ask for this illness and I don’t want it, but having it helps me appreciate every moment I am alive.  I hold my kids tighter, I linger watching the ocean and I say thank you a lot.  Being a part of the Angioma Alliance board has been incredible.  I have met people with boundless courage, passion and strength.  I am witnessing the miracle that can happen when people have hope.  I am absolutely determined to see a cure for this disease and I will do anything I possibly can to help make this happen.

 

Tracy Brown

My 13-year-old son, Zach Brown, has had 2 brain bleeds since we discovered his angioma in October of 2011. It affected the left side of his body and the right side of his face.  He had to learn to walk again as well as lots of occupational therapy to regain fine motor skills of his left hand. He has had 5 eye surgeries to correct problems caused by the bleeding in his brainstem. He has facial paralysis on the right side of his face, which he continues to try to treat with different types of therapies, lastly a cross face nerve graft to reanimate his face. 

With all of this, he has kept a positive attitude and hope for his future. Because of the brainstem location of his angioma, surgery will only be used if necessary to save his life, because there is no way to access it without causing some type of damage. What all of this means is that my son currently has no treatment options. We can only deal with the effects of a bleed. As a parent, I refuse to accept that answer, so I am organizing the Zach Brown Virtual 5K for Angioma Alliance to help raise funds for research.

 

 

 

 

 

April Biddle

It was in 2011 when my initial symptoms appeared, I had worked for two weeks thinking I was just having visual fatigue. Also, my right foot was dragging due to a suspected spider bite, all this in combination with my new work hours. I only went to the hospital after my primary physician told me to go. After going to ER, I was told I had a brain bleed. That was it, and they put me on extra blood pressure medication. This went on for three months and three more trips. A neurologist finally explained that the blood was not going away, and referred me to a surgeon. He informed me that I had something in my brain that was getting larger; he would like to do surgery to at least make me feel better — if not cure me. I said yes. A few weeks after my surgery, I was better in some ways but worse when it came to walking. 

In 2013, I was diagnosed with an inoperable cavernous angioma. My doctor explained that it wasn’t cancerous, but something I was born with. However, it is too deep and and would cause more harm attempting to remove it rather than leaving it be. A clean MRI three years later, and I finally know it is a cavernous angioma. I’m still having small bleeds…I now have half vision in my right and left eyes.  I endure headaches almost everyday; I can no longer tolerate the heat and had to move from Florida up to Kentucky.  I still can't do what I loved to do, which is renovate homes.

Looking back, I do remember having a bad seizure when I was in my twenties, yet an MRI wasn’t given.  I’m 49 now and happy to still be here to help my family and friends.


Lisa Albreada-Ponte

I first became aware I had cavernous angiomas at age 17, during my freshman year at college back in 2005. I remember talking on the phone with my father while walking back to my dorm room when I suddenly started forgetting how to say words and the names of places. I became nauseous and wanted to lay down because I had no idea why I was feeling this way. My father knew something wasn’t right when he was on the phone with me and called my swim coach to send some of the girls on my team to locate me. By the time they found me I had blacked out and was barely
responsive. I eventually 
suffered a grand mal seizure, waking up the next day in the hospital and totally unaware of what had happened. 

I had suffered a bleed in my temporal lobe. This is when we became aware we had the familial  form of the disorder. We knew at the time my mother had cavernous angiomas. She was diagnosed in 1992 after having a bleed and severe headaches. As a 10 year-old child, she was misdiagnosed as having had a seizure and suffered partial paralysis on the right side. Before my incident in college, we thought she was the only family member with angiomas. We now know that my grandmother, mother and I all have at least 15 cavernous angiomas in various locations.

I had been symptom free since my one seizure in 2005. However, in January of this year, I gave birth to my first child. Since her birth, I have had about seven simple partial seizures, but they seem to be slowing down now. When my daughter was born, we knew there was a 50/50 chance she would also have cavernous angiomas. She was born with what appeared to be bruising on her body and none of us previously have had the skin version so initially we did not realize her markings were caused by the same disorder (her markings have since faded some to what’s seen in the picture).  The doctors performed an MRI the day after she was born and they found 3-4 cavernous angiomas near her brainstem and spine. At this point all we can do is monitor and pray that she never experiences any symptoms and can lead a normal life. Luckily, up to this point none of us have had to have any surgeries to remove angiomas and our symptoms have been manageable.

 

 

Michaela Black

I am Micheala Black. I am 25, a wife and mother of three small children. On the outside I look like any ordinary young woman. But just below the surface I am not. When I was nine years old I had my first seizure. Since then I have had many bleeds, due to the multiple cavernous angiomas spread throughout my brain. After almost a dozen different medications and my seizures gradually getting worse, I had brain surgery in 2013. The neurosurgeons removed a lesion from the left side of my brain the size of a fist. I had only a few seizures after that and then they stopped.  

Five years later they began again and they were worse than before. I fell to the floor every single time and had concussions from most of them that both my short term and long term memory was severely affected. I was put back on very strong medications that made my memory loss even worse, but had very few other side effects besides severe dizziness. I lost my license to drive for almost three years.  My children have become good at getting their father when they see me start to seize. 

For the most part, my childhood was happy, and adulthood has been enjoyable as well. But as anyone with this disease knows, it is always in the      back of your head: The worry, the fear, the constant reminder. This disease        needs to be more well known, to everyone, not just those of us who carry it      within us.

 

 

Shannon Ortiz

I was 13 years old on the day I was diagnosed with cavernous angioma. The day started off normal as can be— I woke up and went to school, but afterward I started twitching, and when I got to Cross Country practice I began to throw up. My coach wanted to call my mom to take me home but I refused because I wanted to stay and run.

This is when everything became a blur — I had started seizing. I was taken to the hospital in my hometown, but was immediately flown out to University of New Mexico Hospital. 

I didn't know why I was there until a neurologist came in and explained what was happening and why. The doctor informed us that a lesion in my right frontal lobe had bled, triggering the seizure. The decision to have brain surgery was made, and a month later my cavernous angioma was resected.

Since then, MRIs have revealed that I have six more lesions in my brain, but I am not having surgery to remove them since they are small, but I still have small seizures so I need to take anti-seizure medication.

My cavernous angiomas are the hereditary form, and comes from my fathers side. However, I'm the only one in the family with symptoms. I often wonder ‘why me?’ ‘why at this age?’ but I thank God every day that this happened to me rather than another family member— I pray nothing does, as I couldn't bear to see any one in my family going through what I’ve been through.

I’m nineteen now, and my goal in life is to help children who suffer from cavernous angioma, as I had no guidance from anyone who knew and felt what it’s like to go through something this big and life changing at such a young age.

  

Kristen Fowler 

Soldier strong, that's what Cavernous Angioma patients are. I've found this out by meeting a lot of these people at the Angioma Alliance. We've been to medical hell and we know what it looks like and come out the other side swinging. I've been to medical hell and it's torture, bloody, ugly, and it looks a whole lot like this 3T MRI scan of mine. I have the CCM3 gene. I've had paralysis, 6 brain surgeries, 3 major bleeds, too many cumulative bleeds to count, and too many Cavernous Angiomas to count. My name is Kristen Fowler.

They first found out that I had this when I was nine. I am now 32 and somewhat of a veteran. I have numbness, pulsating throughout my body, often cannot think straight, pain throughout my body, trouble sleeping, a cyst in my c-spine, dopiness, weakness in my body, different types of seizures ( not the convulsant kind as of yet ) such as out-of-body feelings,multiple types of headaches. Day to day I get a mix match of all of these and rarely barely any. This is made harder by the fact that if they go to take an angioma away via surgery, the angiomas grow back and sometimes multiply.

I say soldier strong because, even though I've been through the gauntlet, I can still do things that my doctors say that I should not be able to do. Such as making stained glass windows. It takes me longer for sure but I am able to do it. Dr. Awad went as far as to say that I must have taught the rest of my brain to work. I am using all of my brain that is possible and that makes me feel powerful. The rest of my fellow gauntlet runners have just as much or even more strength to keep living and thriving (pardon the Kaiser reference). I used to think that I would not let my MRIs define me. But, yet again, maybe they do. The brain is an amazing thing, and I beat the odds.


 

 

 

Michelle Waite

In October of 2002, I was diagnosed with an inoperable deep-rooted cavernous angioma located in my brain stem. One of my neurologists told me, “If you were my daughter I would tell you to live your life as you normally would because any one of us could die at any moment.” I have lived that motto even in the difficult years ahead. 

In August of 2009, I had a massive fall which triggered numerous neurological symptoms (i.e. cold water running through the left side of my head and pain with tingling on the left side of my face). My neurologist sent me home with a prescription — he said I was having facial migraines. 

Months later, I sought out a new neurologist as I felt my mine wasn’t listening to me, but only sending me home with more medications for my symptoms. My new neurologist immediately ordered an MRI. He called me in to tell me that there was evidence of three bleeds, and apologized that they were unable to help me due to the lack of technology and knowledge for my cavernous angioma.

 

However, I was recommended to Dr. Gary Steinberg at Stanford Medical Center, a mere five hours away. I had initially declined surgery. Yet, if I wanted to live to raise my six year old twins, I had no choice but to try.

On August 10, 2010, I underwent a lengthy but successful surgery to remove my brainstem cavernous angioma. Through the grace of God, all the prayers, and the incredibly talented Dr. Steinberg and his staff, I am here today. Recovery was difficult, yet I have persevered and have very few physical limitations. I do suffer with CPS (chronic pain syndrome) 24/7, limiting what I am able to accomplish. I also have an extreme hypersensitivity which has changed multiple facets of my life. 

With all that said, I live day-to-day with optimism and love in my heart for my kids, my family, and my friends.

 

 

Marlo Glavan

Like most of us affected, I had no idea I had this little cluster of blood vessels waiting to bleed in my brain until, well, I had my first hemorrhage at 25. I am and was a healthy, active woman. I didn't smoke, but I was often really stressed. 

During this time, I went to college and worked for a property development firm. It was while I was sitting at work that I had a sudden onset of what seemed like a horrible migraine. I touched the back of my head, because I was sure I was shot or hit with a bat. Then my vision went blank, and I threw up bile. I proceeded to the nearest hospital where I waited for 8 hours. My scans showed a cavernous angioma. They immediately life flighted me to Cleveland Clinic where the team of neurosurgeons were debating a method of treatment.

Due to the location of my lesion, on the top of my brain stem, I believe in the thalamus. My doctors suggested  brain surgery was far worse than just leaving it and treating my symptoms. I stayed in intensive care for the weekend, and then was sent home.

I had another bleed just 6 months after. Luckily each time I do not have serious neurological deficiencies. Since then, I have had one more, and that was during the first trimester of my pregnancy, back in 2011. At this point, I am a healthy 33-year-old with a healthy three year old son. I try not to think about my diagnosis, but do pray that it never bleeds again. I am blessed to have found Angioma Alliance for support!

 

Rhonda

Our story begins in late October 2013. One Wednesday, my son started to complain about lower back pain; I didn't think too much about it as he had been planting trees with scouts the Saturday before. That Friday, he was still complaining so I took him to his pediatrician to see what the problem was. She thought that it was most likely a muscle strain, so we returned home. The next day, his right leg started tingling. When Monday came, he was unable to move his right leg at all. That’s when I took him to the ER. They took him in for an MRI and later transferred us to the Hershey Children's Hospital. There, he had numerous MRIs, a spinal tap and an angiogram. Over the next few days, he became paralyzed from his waist down.

We learned that he has 2 cavernous angiomas in his spinal cord, and that the larger of the two had bled. He started physical and occupational therapies to learn living life from a wheelchair - we were told that he had a 20% chance of ever walking again. After nine days, he was transferred to the Rehab Hospital where he continued with PT and OT services. Just before Christmas (a little more than 4 weeks) later he was discharged!  He continued with outpatient PT/OT and one day, I picked him up and saw him walking with the parallel bars. It brought tears to my eyes to see my boy walk AGAIN for the first time. He is able to walk short distances now without a walker though his legs are slightly bent at the knee. He has come a long way. Despite the fact that he still does not have use of his bladder and bowel, I feel so blessed and thankful for all of the progress that he has made. He will see the neurosurgeon June 17th, and will have another MRI to see if there is any change to his angiomas. Surgery has not been an option so far.

 

Allison Ruggles

As a nurse, wife and mother of three young girls, Allison Ruggles had the perfect life. In 2004, a trip to a neurologist for back pain resulted in a terrifying diagnosis of brain cancer. When an MRI instead revealed a cavernous angioma, Allison was relieved. She couldn’t know then what the lesion would do to her and her family.

Initially, her doctors recommended a “wait and see” approach. But, over time, the repeated bleeding of her cavernous angioma made intervention inevitable. Her surgery was considered a success. Doctors completely removed her lesion, and hemorrhaging was no longer a worry.

However, instead of returning to her old life, Allison woke from surgery permanently disabled. Her legs would no longer obey the command to walk. Her hands could no longer write or button. Her face was sunken with facial paralysis, leaving her unable to kiss her husband, smile at her children, or close her eyes to sleep. Instead of caring for her family, was caring for her.

April 4, 2014 marked seven years since Allison’s lesion was removed. She has endured five eye surgeries and facial reanimation surgery. yet, Allison knows the alternative to surgery might have been worse.

“I’m not going to pretend my recovery hasn’t been challenging. But I haven’t missed any of my daughters’ birthdays or graduations. For that, I’m very grateful.”

Allison reaches out to those who are newly diagnosed or struggling.

“I know not long ago my surgery was considered too complicated. I also know there are others out there who are not as blessed. I continue on for those who can’t.”

 

 

Myrna Sarowitz

My story started six years ago. It began with a feeling of irritation under my right arm. Over the next several months it progressed to pain under and down my arm. The doctors diagnosed it as my rotator cuff.  Then I began to have episodes of high blood pressure with a feeling of a band around my head. I had always had low blood pressure. After 8 visits to the ER they admitted me. They gave me a cocktail of meds to adjust my blood pressure. The next symptom I had was numbness around my waist. Finally after two years, a doctor at the University of Chicago diagnosed a cavernoma in my spinal cord.

     I had surgery four years ago. I can walk by myself, but I have extensive            numbness from my waist down. I still have the pain in my arm. However I        am grateful I can walk. I am also grateful to my husband, three children,          and six grandchildren for their love and support. I am looking forward to the      day when we will have a drug to treat our disease.

 

Calvin Broderick 

This is our son, Calvin. He is 14 now, but we found he had genetic cavernous angiomas when he was only three years old after having a seizure in the bathtub. He had brain surgery at the age of four to remove a superficial lesion, but currently still has three lesions. His cavernous angiomas are considered inactive at this time.

Calvin does suffer from headaches and his other lesions are much deeper, in the white matter of his brain. We are very fortunate that he has not had any additional bleeds and has been able to live a fairly normal life of a child. However, with a disease like this you just never know when the next shoe will drop.

We want other families who have children with this condition to know that it is scary and it scares him sometimes but a happy life is possible. The best advice given to us in the beginning was from a fellow mom, Liz, who was         going through the same thing. She told me, "Live today for today, and               cherish every moment." She was my saving grace 10 years ago and her kind     words continue to help us today.

 

Heather Abramovic

I was diagnosed with a cavernous angioma after waking up with pins and needles down my left side. My right thalamic angioma had bled for the first time when I was 22 years old. I saw countless neurosurgeons and all said to leave it alone due to the horrible location in my brain and I was overall doing really well, I was running 3 miles a day and was a full time college student. My angioma bled again 6 months after the first and I was directed to have gamma knife surgery on it.  

After my gamma knife surgery, my angioma bled again a month later, and yet again two months after that! It was one angry angioma! In total, I had five bleeds in eleven months. The fifth and final one was so severe it paralyzed my left side. 

I had my resection surgery almost 18 months ago. It was successful and all post MRIs show nothing remains of the angioma. I am now running again and getting married in five months! I still have some left sided hemiplegia and some vision problems but still working hard at it! I'm young and resilient so this can’t and won't hold me down!