Sorry this is so long, I often read stories and wonder how they got so long. Now I know, it is hard to condense a big part of your life.
After 4 years I am at a cross roads and ready to post my story. I have read and received inspiration from everyone’s story and only recently have signed on as a member of the Angioma Alliance and decided to put myself out there. I guess I have been afraid to say it out loud for fear of it being true.
My CCM story of my life begins in October of 2001. I have read a lot of people’s stories and it seems to be a common year for the first occurrence. I had attended a Halloween party the night before and the next morning I didn’t feel right. I was extremely dizzy and was bumping into walls because I was so off balance. I figured it must have been from the night before and shrugged it off for a couple of hours. The dizziness got so bad that I knew I had to go in. It was a Sunday so my only option was an ER. I hate to go to a doctor but I knew I didn’t feel right.
As always the ER is a long drawn out process and a doctor examined me. This was the first in a LONG list of doctors to look at me dumbfounded and say, ” I don’t have a clue, you must just be dizzy.” I tried explaining that it was different, it was like I would look around the room and it took a couple of seconds for the room to catch up to my vision. Trying to pacify me he ordered a CT. He said that he didn’t think that they saw anything abnormal and sent me home. He gave me Meclazine to control the dizziness. I went home and slept and when I woke up I had double vision. Everything I saw had one image vertically stacked next to the other. I called back the ER and they gave me the best line of this whole ordeal. “Obviously you are having a reaction to the Meclazine. If you don’t want double vision don’t take the Meclazine, if you don’t want the dizziness take the Meclazine”. Classic! Needless to say that was my last trip to that institution.
The Week After:
The next morning I woke up and my one eye had turned out. If I covered that eye, the other eye went out. I called my family doctor and he said it was time to go back to the hospital. I went to the next hospital and they sent in a neurologist. She examined me and said, “Wow this looks bad.” Another great start I thought. She admitted me to the hospital and ordered a MRI. From that they concluded that I had lesions in the brain but she didn’t know what would cause them. My first diagnosis was MS. I stayed there for 5 days and had several MRI’s, CT scans and a cerebral angiogram. After 5 days I was released with no diagnosis. Possible MS or a AVM or CCM was what I was given.
I had follow ups with a neuro-opthomlogist, ophthalmologist, neurologist, neurosurgeon and my family doctor. I still had my eye that turned out and nystagmus when I looked to the extreme left or right. All of these doctors for the next three weeks gave out differing theories for what was wrong. I had my neurologist and my neuro-optholmologist betting each other (literally) between MS and an AVM. I guess you run into all types of doctors with our illness.
The Year to Follow:
So, I was having a vain and depressed moment. It was three weeks since the hospital and I was going to be getting married in 8 months and I didn’t want to book a photographer because of my eye. I took a long hot bath and felt sorry for myself. I can’t believe it but I looked around and I didn’t see double. My eye went back in just like that. After taking many pictures, dancing and jumping up and down with my then fiancé and saving the candles and bubble bath I used, I called everyone I knew. The following year I didn’t see the doctors and still had no diagnosis. On a side note, I married an unbelievable man that year who would see me through this mess and comfort me along the way.
It wasn’t until I went to make an appointment with my OB to discuss my health and the possibility of having kids did I finally have a doctor who was alert enough to search for a doctor who would have a clue. She didn’t want to see me pregnant until she knew how they would treat me, and for the baby, if something were to happen. I am fortunate enough to live in the Midwest and have a lot of teaching hospitals to choose from and I got a great second opinion. I finally knew what I had. The neurosurgeon had ordered a MRI w/ and w/out contrast and finally ordered the most important factor with echo gradient imaging. I have a CCM in my pons with a venous angioma. My CCM abuts the 4th ventricle so I am not a candidate for surgery. He confirmed that I had had a hemorrhage the year before.
New Bleeds and a Beautiful Son Later:
I have had two bleeds since then. One was while I was pregnant, it was very minor, I had severe dizziness that lasted about two days. The second bleed was in July of 2004. I rolled over in the middle of the night and I felt like you do when you go down a big hill on a roller coaster. I sat up and looked around, no double vision, no dizziness so I thought I must have had a dream that made me feel that way. I laid back down and then I realized it. If I leaned my head down more than 45 degrees my vision became inverted. The top became bottom and vice versa. Needless to say it made me fall because I had no reference point. After two days it went away. On a side note I had a great, problem free pregnancy and delivered C-Section with no complications.
The Cross Roads:
I have always been told I am not a candidate for surgery because they would cause at the very least permanent double vision as well as any other complications that could arise. My last MRI was in December 2004. I have had what they call non-disabling symptoms. My nystagmus is back when I look extreme left or right, I have some funny things with my hearing (I lose it for a little bit and weird noises that come and go) and I have headaches pretty regularly. I was surprised when my neurosurgeon had said that if you have another bleed that results in double vision we will begin to look at surgery. My thought was why on earth would I do that? If I have double vision why would I have surgery to guarantee double vision and a whole mess of other possibilities? Then the words came. You are running out of “free space” to bleed, if we don’t do surgery the next bleed would be coma or death.
I can’t say it enough my family has been great and supportive. I have a very close-knit family. My husband has been everything I have needed throughout all of this and I know he will continue to provide that strength if I lose mine. I have now grown to appreciate each clear vision day and don’t dwell on if the world will suddenly go double. I appreciate the Angioma Alliance and your stories because it finally connects you to others who are going through the same thing. It is hard to be the “expert” in our little corners of the world. So often you go into a doctor or pharmacist and they see the history on your chart and you have to go into a 20 minute explanation on what you have because nobody has heard of it. The hardest thing is to have nobody to be afraid with. So often I feel I shelter my family from symptoms I have or things I read because I don’t want to scare them. Today is a good day, it is a clear vision day.