My name is Gail Tanner - I am now 46, married to Richard and have 2 children Matthew (14) and Emily (12). I was a market research analyst before my AVM bleed, an avid reader and a HUGE Cleveland Indians fan. I enthusiastically worked out (running, step classes, strength training) and was also a volunteer leader with a middle school youth ministry. I'm still a reader and a volunteer but other activities like work and working out have been put on hold for now.
In the early evening of Sunday ,January 31, (Super Bowl Sunday) my family and I were packing up boxes of old clothes, books, toys and games for the Vietnam Vets pickup the following morning. As I sat on the floor packing, I felt a strange tingling sensation around my mouth as if I had just been given novocaine. 30 minutes later I went to the kitchen to get a glass of water and was talking and noticed my speech was slurred. The sensation was so unusual I said to my husband Rich that I'd had this tingling around my mouth a half hour earlier and now my speech was slurred and asked him if he thought I could have just had a stroke. Immediately he said we have to get to the hospital; I did not want to go to the hospital. I was sure whatever it was, maybe a migraine, would just pass but when I sat down to put my shoes on I could not use my left arm.
By the time we got to the hospital, I could not walk. I wanted so desperately to stay calm and in control, so I began to meditate on a Bible verse, that had always been a comfort to me in the past. "Whom have I in heaven but thee? And there is none upon earth I desire beside thee? My heart and my flesh may fail but God is the strength of my life and my portion forever." Psalm 73:25-26.
Emergency personnel were running in and out of the room asking all kinds of questions - a neurologist was called in, and then a neurosurgeon. They said it could be a stroke or a bleed in the brain - and only a CT scan would tell for sure. After an hour of questions and initial examination, I was taken for a CT scan which confirmed there was a bleed in the brain. By the time they did the scan and told me it was a bleed, I was pretty disoriented. It felt like I was there listening and then it seemed like I was waking up when something else would happen. To determine where the bleed was, they had to perform an angiogram, which from what I could understand was shooting dye into your brain through an artery in the groin. Meanwhile, Rich was making phone calls to my sisters, parents and later to members of our church fellowship group and others so that they would pray for us in the next few hours.
When they did the angiogram, I was told I had an AVM about 6-7 cm into the brain. I had never heard of this and had no idea what anyone was talking about. Dr. West, the neurosurgeon, calmly explained what a malformation was and that the AVM had ruptured and they would have to stop the bleeding. He said I would have to have brain surgery immediately to remove the AVM because I found out later, if they didn't do the surgery, the pressure and swelling of the brain from the bleed would be fatal. I also found out later that the angiogram had been performed to determine precisely where the AVM was and that if I had become unconscious before the angio, they would have done the surgery not knowing where it was exactly because time was so critical.
By the time I went to surgery 6-7 hours had gone by since we had arrived at the hospital. I am certain that God was the One providing me with calm and assurance as we waited for each procedure to take place. I was scared and I kept thinking and asking about my kids. As I was being wheeled to surgery, I even asked the neurosurgeon if I could go home and talk to my children about what was happening and maybe come back the next day and have the surgery. He probably thought I had lost my mind, which by this time I probably had!! Obviously I wasn't given this option. I was still praying, but afraid, contemplating brain surgery. I kept thinking about my children and what must Rich, my husband be going through? I tried hard not to think about the risks of anesthesia, the risks of brain surgery, the fact that you could wake up and not be you anymore. I also kept thinking of my parents who had lost their only son, my brother who had had 2 brain surgeries and died from a brain tumor.
Before I went in to the O.R., Rich, my husband, Carol, one of our church pastors, my sister Marylee and a friend came to be with me briefly. My sister read a Psalm and Carol prayed for me and for Dr. West. Rich let me know that my other sister Karen was with our children and that my parents were reached in Naples Florida and were on their way. The last thing I remember was the anesthesiologist talking to me.
I then had the surgery and awoke in intensive care, very disoriented, but my first thought was it's still me and I knew that everything was going to be all right. My thoughts were still my thoughts (I thought about my kids and my poor husband who had had to watch and wait - to me a much harder task than what I'd experienced). I also felt that God was supplying me with an assurance that could not have come from me.
In the morning, the neurosurgeon had another angiogram performed and was very excited to report that the AVM was successfully removed. The way he said it was that everything that shouldn't be there was gone and everything that should be there was still there. With my sister and my husband standing there, he asked me to raise my left leg and to open my left hand - though I couldn't feel my leg, I lifted it and it went up easy and we all cheered! But the hand wouldn't open until the doctor took my hand and told me to do it with my right hand simultaneously and it worked. He also asked me to recount the night before and what had happened at the hospital; I was able to tell him most of the procedures and the names of most of the doctors. By asking these simple questions, Dr. West made me feel confident that I was going to be okay.
I spent a week in intensive care and by the second day I was asking my husband for my briefcase and my planner so he could cancel appointments, make phone calls, pay bills. I was so grateful that I hadn't lost my memory or my cognitive thinking. The worst experience I had in ICU was when they came to take the staples out of my scalp from the surgery. There was no local given; they just pulled the staples out with what seemed to be pliers. I couldn't believe it! But I was so grateful the staples were coming out because it meant they could wash my hair! ICU was also hard because it's so difficult to sleep there. By the end of the week, I was able to sit up in a wheelchair, even though I couldn't feel my left side. After a week in ICU, I was moved to the Rehab unit where patients with rebuilt joints, strokes, etc. stay for inpatient rehabilitation.
What has been most overwhelming to me is how God worked before, during, and after this bleed. I learned later if an AVM bleeds the patient may have a severe headache but most commonly has a stroke and often dies. A day does not go by that I am not praising God for sparing my life, for saving me physically, for allowing me to see my children grow up. It is difficult for me to even sit here and write this without crying - my heart is so welled up with gratitude to Him. His hand was also over me the entire week I spent a week in ICU. I attribute this to so many people praying not only at my church, but all over the country.
One of the many miracles I saw after the surgery was that large motor skills returned to my left side almost immediately. I was able to walk within two weeks of the surgery and through intense physical and occupational therapy began to exercise my left arm within 4 weeks. Dr. West, my neurosurgeon, repeatedly told me my recovery was remarkable, when he would come to Rehab. It was a miracle to me because I found out that the malformation was located and the surgery took place in that part of the brain that controls the motor skills on the left side.
Of course, it took (and is still taking!) somewhat longer for the fine motor skills and coordination to return on the left side, but after weeks of physical and occupational therapy, putting pegs in holes, using weights and therabands, I could finally pick up a penny. And I could feel a filament on my palm. I had a lot of speech therapy too to help with my face, speech and tongue.
The support and encouragement I received from my husband and two children, my parents, sisters and friends, from so many of the people at our church and across the country was overwhelming. There were so many people praying, sending cards, sending flowers - friends and co-workers coming to visit throughout my stay in Rehab - my small fellowship group and many members of our church, neighbors and my children's friends' families making meals and coming to stay with me at home my first two weeks out of the hospital. I will always be grateful for the love of Christ in these people and the power of prayer during this ordeal.
Because I lost sensation completely on my left side, it took a long time to learn to be aware of my left side, where it was in space and what was near it. While I got some of the sensation back within the first few months (eg., the ability to feel hot and cold) , 8 months later my left side is still very numb. I can feel moving touch, something hard, like walking into a chair; I don't feel my eyelid or ear or side of my face or shoulder, arm, hand, hip or foot.
Actually it's difficult to describe, the side just feels dead and numb, which is weird because I can walk and this summer I swam and even rode my bike. (Only had 2 bike accidents and that's because I fell trying to get off the bike - it's a coordination/balance problem because I can't feel the left side). The foot is the absolute worst - most of the time I feel like I am dragging around a concrete block - I sprained the left ankle this summer just walking down the stairs because I can't always feel where I'm putting my foot.
So, 8 months later, I continue to try and write with my left hand (because I am left-handed) and it's still quite horrible. My face is much more symmetrical now; you can only tell there is a droop when I smile. I still do physical therapy on my left leg and foot. But while the therapy seems to help with coordination and muscle tone, it does nothing to relieve the numbness.. I have started acupuncture, hoping it will stimulate the nerves so that I will get back more sensation.
I am still quite tired which I know has nothing to do with the brain surgery anymore. I wish I knew why. I think it has to do with having to work so hard to get my left side to ccoperate with daily tasks, like taking a shower, folding laundry, etc. It's like your body has to work extra hard to compensate for the part that isn't working correctly. It is a mental exhaustion that starts to become physical in the late afternoon. If any AVM survivors know what this is, I would so appreciate hearing from you.
I have worked hard to get this much of my body back and there is still a big piece missing. When half of your body feel like it has had a novocaine shot, it is very tiring but if this is all I have to live with, I am grateful. Compared to what many people have gone through and have to live with in the stories I have read here at Dr. Maples' site, I am incredibly blessed.
For me, these past 8 months have been a time in getting to know my God in such a deep personal way, that I would never trade this time for anything. Sometimes we are allowed to go through tumultuous life-changing events, like an AVM, so that God can reveal what our true purpose is. I think we are created to know Him and love Him and be one with Him. I truly believe because of my personality I never would have known the love, grace or presence of God like I do now if this had not happened to me. I would never have taken the time to just sit in His presence, being still and knowing He is God. For all of us who have asked "why me?" I leave you these words from a daily devotional that is 100 years old:
"If you are going through a solitary way, read John 17. It will explain exactly why you are where you are - Jesus has prayed that you may be one with the Father as He is. Are you helping Him to answer that prayer? The purpose of God is not to answer our prayers, but by our prayers we come to discern the mind of God, and this is revealed in John 17. There is one prayer God must answer; and that is the prayer of Jesus - that they may be one, even as We are One." Are we as close to Jesus Christ as that?
God is not concerned about our plans; He does not say - Do you want to go through this bereavement; this upset [this AVM]? He allows these things for His own purpose. The things we are going through are either making us sweeter, better, nobler men and women; or they are making us more captious and fault-finding , more insistent upon our own way. The things that happen either make us fiends or they make us saints; it depends entirely upon the relationship we are in to God. If we say "Thy will be done," we get the consolation of John 17, of knowing that our Father is working according to His own wisdom. Jesus has prayed nothing less for us than absolute oneness with Himself and God will not leave us alone until we are one with Him." (from My Utmost for His Highest, by Oswald Chambers)
God's precious peace and presence be with you all. - Gail Tanner