Well, I really don’t know where my story begins. Over the years, I have been diagnosed with allergies, TMJ, GERD and just plain being a hypochondriac. I have always believed that I had none of these things.
I began having horrible headaches after taking birth control pills in 1971. After I stopped taking them, the headaches continued. It seemed that Drs. didn’t know what to do with me. I felt like they just kept passing me around. I got allergy shots, even though my tests showed that I didn’t have any. My symptoms presented themselves as sinus trouble and I was given antibiotic often .It got to the point where the symptoms continued, but there was no sign of infection. I just learned to live with it.
Looking back on it, every time I took an aerobics class or went to a personal trainer, I would be fine for awhile and then I would feel sick and just had a feeling of malaise that I didn’t understand, but I had to stop going. I did jazzercise for ten years but in 1999, I just couldn’t go any more.
That’s when things just started to get out of my control. I volunteered at my sons’ high school and there were days where I would get a sudden feeling of malaise and nausea. I never got sick, but I couldn’t get home fast enough .I just wanted to lay down. I would go for walks with my husband and the same thing happened .I needed to get home to lay down. I couldn’t pinpoint what was wrong, I just felt terrible and out of control.
For years I didn’t even mention a lot of my symptoms to my husband, because frankly, I thought I was going crazy. It got to a point, where I couldn’t hide it anymore.
In 2000, my husband and I bought a home in Tucson Arizona. I was very excited, but couldn’t shake the feeling, that something was very wrong. We moved in Jan. of 2001. I couldn’t shake the feeling that I was moving out there to die. Little did I know that I was moving out there to live!
The summer of 2001, our children came to visit us in AZ. I felt really weird and out of control, but I was able to hide it. After the kids left, my finger tips on my right side became numb. My husband’s cousin happened to live in Tucson and she is a nurse and her husband is a doctor. They thought that I was having a stroke (the right side of my face was also a little numb) and they sent me to a neurologist, who saw me right away. The Dr. ordered a cat scan that showed a bleed in my brain. The next day I had an MRI .The MRI confirmed this and I was told that I had a venous/cavernous angioma in my brain stem.
The neurologist really played it down. He said that the CCM had bled sometime in the last 2 weeks. I knew exactly when it bled. My husband and I had gone to a baseball game with another couple, 2 weeks before we went to Tucson. I was bending down to get my drink, when all of a sudden I just felt very weird. It was like my whole body just went limp. I really couldn’t tell anyone how I felt because, I really didn’t know. It was like I couldn’t move but I needed to lay down. I was taken to the hospital by ambulance. All my vitals were fine, but I was breathing funny, like I was out of breath. It just so happens, that I had gone for a long bike ride down at the beach with a friend that day. When the Dr. saw me she asked me point blank “Have you ever had a panic attack before?” I just wanted to smack her!
When we got back to Virginia Beach, I saw a neurosurgeon who ordered a cerebral angiogram to rule out an AVM. On the way back to the recovery room, the radiologist told my husband and me not to let anyone operate on me. He said that these young doctors think they can do anything. I kept those words with me and became proactive and moved with caution from then on.
That was my first documented bleed, but the MRI showed that I had had more. In many ways, I was relieved to find that there was finally a reason for all my feelings, and that I was not going nuts .I was told that my CCM was inoperable and learn to live with it, but I felt in my gut, that the neurosurgeon that I saw, couldn’t wait to get his hands on me .He also seemed irritated when I went to Dr. Rigamonte at Johns Hopkins for a second opinion. His opinion was the same, watch and wait. I also saw a neurologist who told me that I had a time bomb in my brain and that I just needed to learn to live with it.
When I was diagnosed in 2001, there was hardly any info about CCM’s and needless to say, I was petrified, but at least I knew that there was reason for all the weird things that were going on with me and I didn’t have to make excuses and hide how I felt. There was some comfort in that.
In 2003, I had another small bleed that I knew was going on and I insisted that the neurologist order an MRI. I was having horrible headaches that were coming more frequently and the migraine med. wasn’t touching. The doctor told me that I couldn’t have an MRI, every time I had the symptoms. I thought they wanted to document my bleeds. Anyway, I hated that neurologist and went to see one at Hopkins that worked with Rigomonte and he agreed to work with my family doctor. I told my family doctor that I was not going to anymore doctors and I asked him if he was comfortable prescribing and adjusting medication that the neurologist at Hopkins prescribed for me. He agreed.
In 2005, my husband and I were getting ready to leave Arizona and drive home. I remember getting a feeling of instant fear going through my body and before we left, I thought to myself, we should not be leaving here, this is where I need to be. I guess I hoped it would pass. It didn’t. I felt really tired and just blah. Again, couldn’t pin point anything. I was very anxious and just a feeling of general malaise. The feelings did not subside, they just got worse. I felt like I had no energy, I had trouble breathing and I felt very lethargic. I just felt like I couldn’t do anything and I was very scared and anxious. I also had reverberations in my left ear.
I went to see my doctor who told me that I needed to get in touch with my neurosurgeon right away. I did that and I really think that he was disappointed that I felt that I didn’t need to come to the emergency room I told him I wanted an MRI and he said that he would have his nurse set it up in the morning. At about 10:00, I hadn’t heard anything, so I called his office – his nurse didn’t know a thing about it and the doctor was in surgery. She and I set up the MRI and I had it done on a Friday.
I did not hear from the doctor by Tuesday and I left messages. I went down to the hospital and picked up my MRI and the report, which showed an active bleed. It was 9 days before the doctor called me back. He left a message on my answering machine saying that he needed my other X-rays to compare the MRI to and that he would be happy to see me in his office that Wednesday. Well, my husband and I went to see him on Wednesday only to find that he was running 2 hours. Behind – would we like to reschedule – needless to say – we were pissed.
I felt pretty bad most of the summer. I couldn’t hide my feelings from anyone .My husband and I were supposed to go to a dude ranch with some friends in September. I just couldn’t do it. That’s when my children and my husband decided that we needed to do something. I couldn’t enjoy my grandchildren or my children. I just felt so bad that I pretty much didn’t do anything.
That’s where Dr. Spetzler comes in. I knew about Dr. Spetzler the whole time. I always knew that he is who I wanted to do my surgery. I heard about him through a friend of a friend of a friend. He operated on a navy admiral and the navy did the research and got the very best. Dr. Spetzler’s name kept popping up in all my research. As a matter of fact, the neurosurgeon, that was not happy about the second opinion from Dr. Rigomonte, he practically got in my face and said “what did Rigomonte say, go see Spetzler?” I knew right then, that Spetzler was my man!
My husaband and I were going to Tucson for 2 weeks in October. I decided that it was time to see Dr. Spetzler for a third opinion. I called his office and told them that we would be in town such and such a date, is there any chance of seeing Dr.Spetzler. To my surprise, they said yes.
I sent my x-rays out ahead and we saw the doctor that Thursday. His opinion – operate. He gave me a 90% chance of being fine. We came home and after much thought, I made up my mind to have the surgery. I called to set it up and to my surprise the receptionist said “what day would you like it?” I was shocked! I set it up for Jan. 10th.
At that point, I knew I had to get things in order and get myself in tip-top shape. It’s strange, but I wasn’t nervous. I felt like it was my only chance to have a normal life, even if I had a deficit. At least I would feel good. Actually, once I made the decision to have the surgery, I never thought about anything going wrong .Michael and I drove across country and got to Tucson Xmas day. We had 10 days of long walks and playing golf. Then came the big day!
We stayed in the hotel across from BNI. My children and my best friend came to be with me. We got to the hospital around 5:30 in the morning and I had been pre-admitted the day before, so everything moved pretty fast. I kissed my family goodbye and the next thing I remember is waking up in intensive care on Jan. 12th.
I had decided before my surgery that I would check my fingernails to see how long there were .I knew that there was a possibility that I could be in a coma and by checking my nails, I could tell how long I was out. To my surprise, they were the same length, and I also felt that I had all my hair – my first thought (and I said it out loud) G D it! They didn’t do the surgery. I also, had no bandages. I was in ICU for 2 days.
When I was moved to a private room, I realized that my whole right side was numb. I also had double vision. It didn’t bother me too much because I knew this could happen and I also knew that it could be temporary. Although my side was numb, I could still move it, but I found out that I was unable to walk. I needed a wheel chair.
I was at BNI until Saturday morning, when I was taken by ambulance to a rehab hospital in Tucson. My husband was sent to get some clothes for me. He came back with nothing but pajamas. The nurse told him that I needed real clothes because I wasn’t going to spend anytime in bed – and she was right!
I was given a shower and my hair was washed the 1st day. I did not have staples or stitches. My incision was glued back together. I couldn’t believe it and neither could the nurse.
At 6:45, it was up and adam! I took a shower (with a little assistance). It was occupational therapy. The bed was made while I took my shower and you were not allowed back in it until after dinner. I quickly found out that I didn’t have time to get back in bed. You had to sit in a chair – for me, my wheel chair, then I was taken to physical therapy. I got back in time for lunch, then, off to occupation therapy. Then dinner, then I could get back in bed. I knew that I had to do everything the therapists asked me to do – it was my ticket out of there!
By Wednesday, I was using a walker and by Friday, I was discharged. I used the walker for 2 days. Then I was on my own. My husband made sure that I did all my physical and occupational therapy every day as soon as breakfast was over. I did outpatient therapy for two weeks. My double vision lasted for 3 months and I was able to drive after 3 months. I also set a goal for myself and I met it. After 6 weeks I was able to walk 3 miles – the walk that my husband and I do everyday when we are in Arizona. I was able to play golf (not very well), but I tried!
Today, two-and-a-half years later, I am able to do everything that I did before. I am still numb on my right side and still lose my balance sometimes. To look at me, you would never know I had brain surgery.
I found that the hardest thing to get over was the anxiety that something was going to happen. It took 2 yrs. to get over that feeling. Dr. Spetzler told me that if I had the surgery, I would be rid of my CCM and never have to think about it again .He was wrong. I think about it everyday. I think about how lucky I was to find him and how truly blessed I am to have so many people that care about me in my life. When I was diagnosed in 2001, there was very little information about CCM’s . I can’t thank Connie Lee and the Angioma Alliance enough for providing the information that I needed to make to make my decision. I am forever grateful.