Introduction

[wilsonKOP]

Hello everyone,

This is my story and how Cavernous Malformations entered my life and have since changed the way I wake up every day. I apologize if this is Too Long Didn’t Read (TLDR) but part of writing this is for myself.

I was first diagnosed with a Cavernous Malformation in 2009. My father had recently passed away from Glioblastoma and our family was on high alert. I had a constant headache (nagging but not detrimental) for over a week and decided to go get it checked out just in case. It was nothing I was told...simply a small growth, likely a cyst. I have been an athlete my entire life so to hear something was nothing meant just that, nothing. So much so that I had forgotten all about the 2009 incident.

My story changed in mid-February 2017. I was working out 6-7 days/week sometimes two a days. I often told friends that I was in better shape at that time than I was as a collegiate athlete. I learned from a young age the ability to listen to my body. This would come in handy, as I would explain to friends at the gym and coworkers that something wasn't right. I would get light headed after a Crossfit workout, sometimes seeing stars. I still continued to workout but the symptoms were getting worse, not better. It was a Wednesday evening; I came home from the gym, showered, and got ready for bed. I crawled into bed and remember telling my wife that the whole world was spinning (kind of like when you had one too many to drink and got the "spins"). She asked if I wanted her to take me to the ER. I told her no and that I would be fine. I woke up the next morning and proceeded to go to work. Sitting in my boss's office, I told him that I just didn't feel right. I felt like I had tunnel vision and that I was having a hard time seeing him. He told me if I didn't feel right to go ahead and head home.

The next morning, I was feeling better and excited to go on a weekend trip with my friends. I wanted to make sure that I didn't miss a workout, I went to the gym in the morning. After the gym, my friends picked me up and we headed to the ski resort for a weekend of fun. We all gathered at the annual meeting space and had a few beers. We unpacked at the chalet and hung out for a few more beverages. Since there was no snow at the resort, we decided an easy morning would be a great way to start the vacation. I woke up that next morning with a splitting headache. Did I really drink that much last night? No way, recounting the drinks in my head, maybe five over the course of five hours. I hadn't had a drink in a while and perhaps that is the root cause of the headache. I proceeded to the shower to rinse off the hangover and was exhausted to say the least. I crawled back into bed and slept for two hours. Rising from my unscheduled morning nap, I climbed the flight of stairs to the main level of the house. At the top of the stairs, I was again exhausted. I said good morning to my friends and immediately found the couch for a much-needed nap.

Throughout the weekend, my symptoms continued to progress. First, it was the exhaustion, then the headaches, and finally the dizziness. We called it a weekend on Monday and all headed back home. Luckily, I had gotten a ride from one of my friends and managed to sit in the front seat groveling on the way home. That evening, I went to see an ENT surgeon (lucky for me, they are a family member). Migraine Associated Vertigo was the diagnosis and a migraine cocktail was prescribed. The next morning, I woke up and immediately texted my boss. I will not be coming in today, I said as I lay in bed with a headache so bad that my head felt like it was going to explode. As I lay in bed, I am wondering what the heck is going on. Later on that evening, I asked my mother to take me to the ER. At this point, the pain was so unbearable that it felt like this was the only option.

We go to our local emergency room, 4 hours later, I get taken into the back room. A CT scan shows a small mass on my brain but again, nothing to be concerned with. It measures 6mm in size and is likely nothing. A stronger migraine cocktail was prescribed and injected IV. The headaches at this point crippling. Is this just stress?, I ask myself. I have an interview for a new job scheduled on Friday. As the week goes on, my symptoms continue to progress. By Friday, I can no longer stand up straight and cannot gain focus on anything without a few seconds of images bouncing. I ask my retired mom to drive me to my interview on Friday morning. During the 50 minute commute, I recognize the fact that even though I am trying to write with my hand, the signal from my brain isn't reaching my hand. I over-look this sign until hours later.

I enter the office where I am supposed to be interviewed. Steps leading up to the second floor look intimidating to me. I think to myself, how and the heck am I going to climb those steps. Sure enough, the interviewer comes down the steps and my balance is challenged. I focus as hard as I can, this job means a lot to me and I can't let something silly like vertigo prohibit me from getting the job. I nail the interview, excited to tell my mom all about it, I get into the car.

I tell my mom, I just need a minute, and that my head feels like it is going to explode. As she starts to drive away from the interview, I lean the passenger seat back. She asks if we are entering the highway in the right direction, as I look up I ask her if there are two red trucks, followed immediately by, are there two road signs. Oh no, double vision. My speech slurs a bit as I frantically I ask my mom to take me to the nearest hospital.

We arrive at the hospital 35 minutes later and my mom drops me at the front of the ER. Figuring that I will have to wait, I can get registered while she parks. I get into the ER and it is empty. Literally within minutes, I am in the back rooms. My mom hasn't even come inside from parking the car. Getting back from a CT scan, I find that my mom is in my room waiting for me. I call my wife and ask if she can bring me some comfortable clothing...probably going to be here for a while.

With my wife and mother in the room, the ER doctor enters. As I tell people in person this story, I typically sidebar to "You know it's bad when the doctor comes in, closes the door, and sits down. Typically in these situations, the doctor pops in for a moment to tell you that you are going to be okay, put your clothes on, and immediately heads to the next patient." "We have found something on your CT scan that is concerning, don't be alarmed but we believe your brain is actively bleeding, there is an ambulance waiting for you to take you to a different hospital." My mother and I have gone through this before and calmly agree to the free ride. My wife, on the other hand, loses it.

I'm at the new hospital, multiple doctors, blood tests and an MRI. Could this be Lyme? The ER doctor here tells me that the growth in my brain has increased in size from Tuesday from 6mm to 11mm and that the cause of my symptoms is in correlation with the test results. A diagnosis of Cavernous Malformations looks likely but the head Neurosurgeon is not available until Monday. A resident arrives to tell us that I need to be admitted to the hospital. Wait, What? No thanks. If the head surgeon can't see me until Monday, I want to go home.

I am miserable all weekend. Bedridden, I feel like my body is fighting gravity. Every time I roll from one side to the other, my head crashes down onto the pillow. I sleep the better part of 20hrs each day. On Monday, I call the office to schedule my appointment. "What are you doing calling me," the nurse asks? I was told to call you this morning I explain. "No, you are supposed to be in our ER. It says here you were unruly and demanded to go home. I giggle in my aching head, thinking that stubbornness runs in the family. I once again employ my mom to take me on the hour drive back to the hospital I was in only 48hrs earlier. An additional series of tests including an Angiogram were conducted. For those still reading, unless absolutely necessary, in my opinion, the worst test ever and not necessary.

A diagnosis of three cavernous malformations, two of which are in my brain stem. I spent the next three days in the hospital. Sleeping mostly but also under supervision. I cannot walk and my balance was shot. At the end of the three days, I am able to walk with the assistance of a cane. The next few months were challenging for me. The risk of surgery currently outweighs the symptoms. Treatment will include physical therapy twice a week to work on the nystagmus and balance issues. A course of medications is prescribed to help with the vertigo, nausea, and headaches. A follow-up meeting is scheduled for the next week to determine the next steps. No driving for the next three months and a request to come back in six months to receive an additional MRI.

At the six-month mark, my friends and family are asking when I am going to get a scan. Although the dizziness is all but gone, the daily headaches persist. Finally after nine months past the initial diagnosis (12/2017) I return for my follow-up MRI. The findings are not great. An additional CM is found in my brain stem, bringing the total number to four. Three of which are present in the brain stem and one in the right cerebellar hemisphere. Of the three initially diagnosed, two have grown in size. Looking for the silver lining in the diagnosis, one has decreased in size.

As I sit here and finish this TLDR novel, it is September 3, 2018. The headaches are still a daily occurrence. Some days better than others but still each and every day I wake up with them. I’ve finally decided that I need to talk to others that are living with CM’s. I take 50mg of Nortriptyline and 400mg of magnesium chloride every night to help with the headaches. They don’t work but I continue to take them with the hope that someday they will work. I also have noticed recently that my vision is starting to get blurry. I am blaming this on my contact lenses but fear that if I go see a doctor, the news I will receive will be negative. I am choosing not to go to the doctor until I absolutely have to go. I find myself blinking two or three times to get focus on an object, words, or picture.

If you are still reading, I appreciate it. I would love to hear from others that are living with daily headaches, what they are doing to manage these headaches. Do you wake up every day with the thought that today is the day that your world will start spinning again (pun intended)? I look forward to learning from this group and sharing stories of the daily struggle that comes with having Cavernous Malformations.

Best,

WilsonKOP

[Elizabeth]

Welcome,

I'm sorry. Your story is fairly typical. Mine was a lot like that at the beginning, except all the doctors I saw said my cm was not causing my symptoms...I was young and healthy...all my symptoms were in my head...ugh!!! Anyways, I had that dizziness...feeling drunk without drinking. I tried to exercise it away and exercise made it worse. My vision was really messed up..I had to stop driving for about two years cuz I couldn't see well enough to drive. I had headaches as a child, teen and young adult, but none after like 28 ish. I ended up only having one and it was big and bleeding. Even though it was in a difficult location, it had to come out. I was progressively deteriorating and I was 36 at time of diagnosis. The experts suggested surgery everyone else said surgery was too risky. I was lucky I only had one. With multiples I changes things and obviously makes it harder. The general recommendations are no blood thinners of any kind, no scuba diving, no roller coasters. Listen to your body. I don't have headaches, so I can't help you with what to take. If you're on Facebook, you might want to check out our group there. From what I hear, it's more active than this forum these days. You should also register with our patient registry...there is ongoing research for a cure and the patient registry is an important part of the research. You are not alone! Take care.

[PattiG]

Hi & welcome, WilsonKOP.

Wish you didn't have to join, but glad you found us.
As Elizabeth said, your experience is fairly typical.
I too have multiples, though mine are throughout my brain. My brain stem CM has fortunately remained 'quiet' and uneventful.
As for headaches, I used to have occasional migraines, but fortunately they stopped after my 1988 surgery in the parietal lobe (a less eloquent location).
If you've not already visited the main site, without overwhelming yourself you may want to check it out @ http://www.angiomaalliance.org/pages.aspx?content=60. Also, you may wish to consider sending copies of your MRI scans for review to specialists @ Centers of Excellence http://www.angiomaalliance.org/pages.as ... 482&id=422.

Wishing you the best,
Patti

[wilsonKOP]

Patti and Elizabeth, thank you both for sharing and the words of positivity. I’ve joined both the FB groups, and have been in contact with the registry. I’m not sure why I waited so long or what drove me to start looking but I am glad I am finally here.

Have a great weekend.

[Elizabeth]

Hi, I hope you are doing well. I got this email today... Not sure if you're interested.

https://angioma.patientcrossroads.org/i ... =component

[Feelgood]

I was diagnosed January 2017. Had surgery April 5, 2018 and I had therapy for 5-6 months (kinda hard to say because of insurance problems.) My cavernous malformation was “big” according to all the doctors I saw. My big symptom was imbalance but when I think back on it headaches were apart of it. Anyways I’m still dealing with this, the big one is out but there’s one more small one they said doesn’t need to come out yet.
Sorry if this is kinda all over the place, I didn’t want to make it long.

[Elizabeth]

Feels good,

Welcome! I hope you have a continued smooth recovery.

[Feelgood]

wilsonKOP,
After the surgery my eyes too were seeing double, more so when I look to my left. Try some eye exercises to stretch and strengthen your eye muscles, this probably won’t cure it but it should at least help. I totally get what your saying about going to the eye doctor but for me right now it’s really about the money.