What is a Cavernoma Malformation?

A few weeks ago I had to go to Covenant for a doctors appointment.  A gentleman in his mid 50's was already on the elevator when I got on.  Right away he asked me if I was from Washington, IA.  Confused, I responded no.  He explained that he saw the W on my shirt and had gotten it confused with his home town.  I laughed and told him that the W stood for Wonder Woman.  He smiled big and I could tell he was about to make a joke out of it so I quickly blurted out that my good friend had gotten it for me as a gift after I had my stroke.  And just like that, the questions started flowing.  "You had a stroke?  I can't even tell.  What caused it?  How old are you?"  He even lifted up his sunglasses to get a better look at me.  I didn't want to be rude so I engaged in the conversation. I told him I was 32 and that I had the stroke in October when I was 15 weeks pregnant.  I explained that I had a cavernoma malformation in my brainstem that had bled; that it was something that I was born with.  He was amazed by my story and continued to compliment me on how well I looked.  He offered me prayers, which I always appreciate (the more I get, the better).  Then, to my surprise, he told me that his brother suffered a stroke two months earlier from an aneurysm and the entire family was incredibly worried about him.  We exchanged some more pleasantries and as we parted he shook my hand and thanked me for giving him hope for his brother.

Like I have said a million times before, God doesn't do anything by accident.  We were meant to ride that elevator together that day.  I gave him hope for his brother and he gave me the gift of encouragement.

Why did I tell you this story?  Because I have at least one of these types of conversations a week.  They don't always end like this one did, but they usually begin this way.  People are always shocked that I have had a stroke.  They always ask why.  I realized that I talk a lot about my CM and my condition, but have never really explained it.

So, let's go to med school.

I have a cavernoma malformation in the pons of my brainstem.  I shorten this to CM, others say CavMal.  So what is that?  Cavernous malformations are abnormally formed blood vessels that have the appearance of a small raspberry in the brain or spinal cord.  They may be hereditary or they may occur on their own.  CM's may leak blood, leading to bleeding in the brain.  Repeat hemorrhages may occur soon after the initial bleed (weeks) or later after the initial bleed (many months or years later), or repeat hemorrhages may never occur. 

My CM is located in the pons of my brainstem.  The pons is small; approximately 2.5 centimeters.  My bleed was 2 centimeters, so the blood from my stroke filled nearly the entire cavity of the pons.  Subsequently, it did a lot of damage!  The pons serves as a bridge between various parts of the nervous system and connects the upper and lower parts of the brain.


The twelve cranial nerves travel through the pons and connect information between the brain and the spine.  Each cranial nerve controls a different bodily function.  These include smell, breathing, vision, hearing, balance, eye movement/function, sensory and motor function, facial function and sensation, biting, chewing, and swallowing, reflexes, sense of temperature and pressure, heart rate control, taste, and muscle control.  My deficits included balance difficulties, slight hearing loss in my left ear, right side facial drooping, loss of sensation on my left side, and significant decreases in left side fine and gross motor functioning.  I was very lucky that my bleed did not effect my breathing, swallowing, or heart rate regulation.

My most substantial deficit has been in my right eye.  After my stroke I suffered from severe double vision and nystagmus (lack of eye movement).  Although my nystagmus is gone, I still have double vision and my eye remains slightly off center.  My bleed caused these deficits, but they are the last to resolve, and most likely permanent, because my CM sits mainly on the sixth cranial nerve.  The sixth nerve, or Abducens nerve, controls lateral eye movement and centering of the pupil.


CM's can be present anywhere in the brain.  Many people have more than one and some forms are genetic, or familial as they are called in the medical world.  I only have one CM and it has been determined that my form in not familial.  Some people have CM's and never know because they never bleed.  Others have CM's that bleed often.  Once a CM bleeds, it is considered "active."  Once it is active, it is often said that it is not IF it bleeds again, but WHEN it will bleed again.  Brainstem CM's are more active than CM's in any other area of the brain and more likely to bleed numerous times.  Obviously, my CM is now considered active.  Each subsequent bleed is usually larger than the last and presents more deficits to the individual.  They are exceptions to this, though.  AND, just because a bleed is worse, it does not mean that it can not be recovered from.

CM's located in the brainstem, like what I have, are the most rare.  Only 0.1%-0.5% of the general population have them.  They are also the most serious.  The brainstem is a small, compact area so CM's are very hard to resect without damaging healthy tissue.  Furthermore, the brainstem controls bodily functions so patients who undergo brainstem surgery can experience a wide range of symptoms.  Any deficit you can think of can happen.  The most common that people in my support group have experienced are difficulty breathing, unable to swallow, failure to control heartbeat, facial, eye, or body paralysis, confusion, and short term memory loss.  For this reason, many surgeons consider brainstem CM's inoperable.  However, in most cases, deficits resulting from surgery resolve over the course of time.  Any permanent deficits after surgery are usually from the bleeds prior to surgery.

So there is my condition defined in a nutshell.  Many people see how well I am doing and think that my hardship is over. Unfortunately, it's not.  My CM is still in my brainstem.  It could remain stagnant or it could bleed again at any time. If that were to happen, I would start all over.  Unless I have surgery to remove it, it will never be over. There will always be that constant worry of another re-bleed. I will always have that constant worry of what another re-bleed would do to me since the first one was so massive.  It is so frustrating to worry all the time.

I remember when the most frustrating part of my day was figuring out what I was going to make for supper.

A lot can change in seven months.