Shelly Rohe's Story


From:"Shelly Rohe"
Sent: November 18, 2006

I was at work when I first had symptoms from the 2 Cerebral Cavernous Angiomas March 15, 2006. I was casting a film and the tension was a little high. I just didn’t feel like myself. My partner told me to leave the door unlocked when I said I was going to the bathroom. I felt faint, but not in a typical way-there were weird sounds, visual distortions, and a knot in my stomach. I did get sick and that’s how I was found, stooped over the toilet completely rigid and shaking. I came to in only a couple of minutes with 7 or 8 people surrounding me, including EMT’s. I told them I didn’t think I needed to go to the hospital. I just needed some water. But my friend persisted and so I went the 3 miles in an ambulance.

Shelly RoheI think I spent 6 hours waiting to be seen. I would be told later that I looked and acted so naturally the ER staff thought I must be there to be checked out after a car accident or work accident. Something just to prove I’d been checked.

My friends waited patiently with me, but there were a lot of worried looks and concern. I felt fine, but then again, I hadn’t witnessed the earlier attack.

Around 10pm they called me in and once again I listened as my friend described what had happened. I have spent 8 years working with people with disabilities and what was being described sounded like a seizure but my mind wouldn’t wrap itself around that thought. I was 34, who starts getting seizures at 34? And so the doctor ordered a bunch of tests, one being a CAT scan.

A little while later, while surrounded by 4 dear friends, the ER doctor rushed into my room and said “We found something”. I thought ‘great’ let’s take care of it so I can get out of here. She then said “Your brain is bleeding and you will need surgery in the morning. We are admitting you to the ICU”. I’m sure that I was in shock because all I could think was that I needed to be a good patient and cooperate. My friends were in tears. Only a couple of hours ago I was commanding a room full of woman waiting to read for a call-back with the director of a movie. Now I was being wheeled through a stark hallway on my way to radiology for an MRI.

I was then brought to the ICU, I had a smile on and said hello to everyone as I went by quiet rooms. All the nurses and hospital staff seemed to stop for a second to look at me. ‘What?’ I thought, ‘Why are you all looking at me?” It only took a minute with my nurse, Michael, to figure it out. He said to me “We aren’t used to people coming into the Neuro ICU able to talk, much less smile as they enter”. He asked me what was wrong and I recanted the ER Doc’s diagnosis.

Scared to death, but now on drugs, I really didn’t want to sleep that night. Michael talked to me to keep me calm. By the next morning, I was exhausted. The doctors kept coming and going. Finally one of them told me that if my brain had been bleeding, it had stopped but that during the MRI they had found another ‘Thing’. Eventually they came to the diagnosis of Cavernous Angiomas, one in my right cortex and one deep in my brain stem. They told me they didn’t need to do surgery immediately and since I didn’t have insurance at the time, they didn’t want to do anything more. They monitored me for 3 nights and then released me.

The doctor told me not to lift anything, blow my nose hard, fly, have caffeine, and a host of other ‘don’t’. I was also told I needed constant supervision. My mom had flown to California from Minnesota and decided to help me pack up my apartment and drive back to Minnesota.

Since then, I’ve spent days on the computer doing research, hours on the phone trying to get insurance/aid and finally with no real changes, I chose to come back to California. I had been given the name of a neurosurgeon over and over and he was at UCLA.

The nurse I met the first night in the hospital had kept in touch and he offered to fly to Minnesota to drive me back. What a strange twist of fate. He’s been such a great friend to me. We’ve tried the dating thing, but at this time, are just great friends.

I did get insurance and have gotten to see the neurosurgeon all the other doctors recommended. He IS willing to remove the growth. I had hoped he’d get them both out, since I want this problem to be fixed, but it seems the one in my brain stem has had no recent bleeds and is in too delicate an area to cut out. So, I will settle for getting the one out that caused the seizure. Since something in the brain stem cannot cause seizures, it is certain that the one in my right cortex is the culprit. I am thankful for the opportunity to have this surgery to remove it.

So far, I’ve had one appointment date pushed back by about a month. I pray this will not happen again. I will now have to repeat a couple of test because the dates will expire. I hated the angiogram and still hurt from it almost a week later. Other than that, I feel hopeful and anxious.

Most of the research I’ve done has stemmed from the Angioma Alliance site. I have read and studied so much, and since I minored in genetics in college, I have been fascinated. I will be a part of the Angioma Alliance’s biobank, which gives me a feeling of being able to do something. I am so thankful for them.

I’ve been so disheartened about life. I was used to traveling on marketing tours and working on film productions. It was a very fast paced lifestyle with so much responsibility and influence. I miss it. I miss my life. I miss me.

I’ve quit a couple of really great jobs-both within my normal capabilities. But right now, it’s been too difficult especially since my license had been suspended. I have sat around worrying and sleeping and trying to make things right again. I don’t know anyone, yet, with CCM’s. My friends have all been fantastic and my family is amazing. I have also had help and assistance from people I don’t even know.

I know that someday soon, I will return to a life of productivity. One in which I will be strong enough to fend for myself and work hard. One in which I will not have the threat of seizures hanging over my head. My ritual in the morning is still to wake in panic and break out in sweat until the reality that I’m still alive sinks in. I then go to the bathroom and look at my reflection in the mirror while touching my legs and giving myself a hug. Whatever comes next, I know that my spirit will fight. I’m not done doing what I need to yet.

Shelly Rohe