“You never know how strong you are until being strong is the only choice you have.” – Bob Marley
Two years ago I was diagnosed with a Cavernous Malformation on the lower right pons of the brainstem. I recently joined the ‘Angioma Alliance‘ group to learn more about this condition and others experience. I have never posted anything about this publicly but now I feel ready to open up and share my experience to hopefully help and learn from others.
It was January of 2016 when I realized the new year was bringing an unwanted change to my health. I was experiencing frequent headaches which were somewhat alarming to me because I had never gotten headaches in the past and medication didn’t seem to take it away. However, I thought maybe it was hormonal as it was around ‘that time’ of the month.
What started as a slight headache had progressively grown worse and I would wake up crying a few nights in a row as the pain was so bad. In the morning I would wake up hopeful that it was gone, and then be severely disappointed when I got out of bed to realize it was still there. My ears were very sensitive due to the migraine, even the shower/fan in the bathroom seemed so loud. I was miserable. One day at work the headache became a sudden excruciating migraine, but I continued to work through it.
In February 2016 the muscle spasms began. At first, I thought anxiety, or maybe I overexerted myself during exercise. I went to Dr. Google and became more anxious as I re-learned all the signs and symptoms of Multiple Sclerosis. I had learned about MS in college and I was always worried I would have it because I ‘fit the profile.’ So by now I was convinced that I had MS.
Next, I began to notice some weakness on my left side. I particularly noticed the left forearm when I went to dump a pot of spaghetti into the strainer and I was too weak to hold the pot. Eventually, I could hardly lift my left arm above my shoulder without the feeling that something was ‘pulling’ it back down. This made it difficult to wash my hair in the shower or style it. I thought maybe I did some damage to my shoulder. I was also experiencing severe neck pain so I associated the weakness with a ‘pinched nerve.’
Finally, one morning I got up to get ready for work. I felt very nauseous. Got into the shower and my left arm was weaker which scared me. I felt sick so I hurried up and got out of the shower. I sat on the toilet because I didn’t know how I was going to be sick, and all of the sudden felt I was going to lose consciousness. I called my boss from the bathroom and told her I was not going to make it to work. I stayed at my boyfriends house at the time while he went to work. I felt better as I slept but when I got up I noticed my smile was asymmetrical. I took pictures to send to my bf and he agreed, it was subtle but there was obviously something going on.
I was so nervous and terrified at this point I wanted him to come home and take me to the ER. By the time he had gotten home I was ready to walk out the door when he told his family where we were going. His mom somehow calmed me down and convinced me not to go to the ER. I called my PCP’s office for advice/referral to neurology and was told to make an appointment. That night I woke up with severe “spasms” in my left leg- mainly the hamstrings and left arm. The spasms felt like giant contractions that lasted too long and were uncontrollable. I immediately sprung out of bed and tried walking around but could barely move my legs. At the time I was living with my brother and he was thankfully home from working the night shift. I ended up in the ER by 1 am. My muscles were going crazy- only on the left side. My BP was elevated. They drew labs and that was it. I was told that I had low potassium (hypokalemia). They gave me some potassium to drink, which tasted awful. Gave me some pain medicine for the headache, some zofran for nausea, and I believe benadryl. I left the hospital around 3:30 a.m. with D/C papers to follow up with PCP and Neurologist. I somehow woke up for work although the combination of drugs still hadn’t worn off and it was hard to keep my eyes open. I felt like I was in a daze on my way to work and it was very hard to stay awake that entire morning.
After finally finding a neurologist that could see me in weeks versus months, I explained my symptoms, he performed a small neuro exam to test my strength and he agreed that the left side was weaker. I was told all of those symptoms were the result of a “complex migraine.” An EEG was ordered which came back normal. I was not satisfied with the answers I received. I know my body and I was certain that something was not right. Finally, the Neurologist ordered an MRI to ‘put my mind at ease.’
By March I went in for the MRI and they gave me a CD before I left. I took it home, opened it on my computer, and I had no idea what I was looking at but I saw a white circle in my brain that I was sure was not supposed to be there. I thought I had MS. The whole weekend I was so full of anxiety. Finally, I get a call while at work. “This is your doctors office. He would like to see you as soon as possible. Please give us a call back and do not take any aspirin.” WHAT DOES THAT EVEN MEAN?! Cue panic attack.
I immediately called and they wouldn’t tell me anything over the phone. Finally, I was sitting in a room when the doctor walks in. He says “Why is your brain bleeding?” I had no idea what to even say. He was so upbeat about the whole thing. Said he never suspected a brain bleed as I was walking and talking just fine. I was surprisingly relieved and asked- “so I don’t have MS?” He assured me that I did not, but I was trading one difficult diagnosis for another. He referred me to a neurosurgeon, who then referred me again to a surgeon who specializes in cavernous malformations.
I could not believe what I was going through. I never expected for anything to actually come of this. Nothing ever did before. A few years prior, I had similar problems, seen a neurologist, had an MRI which came back normal and was told to follow up with PCP. All of my symptoms were relayed to ‘generalized anxiety’ which I was prescribed medication for, but I am not one to take medicine so I decided that this was something I could conquer without meds. In a way, I was relieved to have a diagnosis that explained my symptoms and to know that it wasn’t all in my head. No pun intended.
So anyway, sitting in my Neurosurgeon’s office I began to cry my eyes out as he told me about the possibility of surgery and the associated risks. Due to the location, the surgery would be a high risk and not an option at this time. If surgery is ever an option the one thing he was confident that would happen would be losing my hearing on the right side, as he would have to drill through my Eustachian tube. Other complications could be blurred or double vision, facial weakness, and the worst possible outcome- a feeding tube as I could lose my ability to swallow. Oh, and death. Taking it all in- in disbelief, I could not maintain my composure. Hearing this at just 24 years old was life-changing.
More tests were ordered to verify that it was indeed a cavernoma. First, another MRI with contrast. Second, CT scan of the brain, which makes you feel like you’re peeing yourself. Finally, a cerebral angiogram where they puncture a catheter through your groin (or wrist) and check out the blood vessels. This one was fun. I got some drugs, had them play reggae music and drifted into a twilight. I was aware but there was no pain. I felt peaceful, actually. Once he finished and they were about to take me back to my room in the hospital for observation and he said “there’s your brain,” pointing to a giant white screen with my brain all lit up, and I stared at it in awe. It was actually quite beautiful to see.
So it was finally confirmed in April of 2016. Cavernous malformation of the brainstem, right pons. No AVM, no fistula, no anuerysm. Just a low flow cluster of capillaries that didn’t form properly and one day decided they were going to let a little blood leak out and see what happens.
I had a second opinion at U of M who also confirmed that I am not a candidate for surgery at this time because: 1) size. They would like a bigger challenge. No, the real reason is that it’s too deep in the brain. If it were bigger it would be easier to access. It’s not worth the risk to pull it out unless it grows or bleeds again and causes symptoms. 2) location. Again, it is right on the brainstem deep down in the brain. Even an experienced surgeon admits that scares him and he wants nothing to do with it if he can avoid it because there is a 50% chance of having some complication whether it is minor or major due to its location and all the brain they’d have to go through to get to it. 3) Asymptomatic. They cannot make me better than I already am. Although I have minor symptoms, they are not significant enough to consider surgery right now as my quality of life is still good.
So now I live with the anxiety of another bleed or this thing growing over time. It is known that if your cavernoma bleeds once, it is likely to bleed again. I do believe the chances of a recurrent bleed decrease significantly after two-five years from the first one. But there is really no certainty on this, and that is what kills me- the uncertainty about cavernomas in general!
I wake up almost every day and look at my smile in the mirror. Not to start the day positively with a smile. But to make sure it is still symmetrical. If I go out and have a few alcoholic beverages I get anxiety that I will wake up with another bleed and feel guilty about drinking. I worry constantly about the possible effects this cavernoma could have on my physical appearance/ability to do things independently/cognitive function/life in general. It is a tough diagnosis to live with. I have had many dark days, but try to keep them mostly bright.
As I end this post after waiting to publish it post ‘annual follow-up’, I was hoping to share good news. There was some. The brainstem cavernoma has not grown since it was discovered and there was no evidence of a recurrent bleed! The bad news- there was a new finding. I now have one on the left temporal lobe and have to watch out for aggression, speech and memory problems, and right-sided symptoms such as numbness and tingling, etc. This means I likely carry the gene and could develop many more. I will now go see Dr. Awad at the University of Chicago to establish myself with an experienced, highly rated neurosurgeon- just to be prepared.
As I continue to read other people’s stories in the Angioma Alliance group they give me hope. Most people go through a rough time at first but the story doesn’t end there. Most are uplifting success stories. The ones I’ve read about going through with surgery have shown me strength that one could only understand being in a similar situation. It’s all about mindset. Maintaining a positive mind will lead to a positive life. There’s no doubt about that. “What you think, you become.” – Buddha.
To be continued…. (or not, hoping this new finding and the original finding cause no more issues and nothing more is discovered so I can move on with my life and never look back).