My name is Cindy Day and on July 28, 1998 my husband Gary was transported by ambulance from our home in Defiance, Ohio to Defiance Hospital at 11:30 p.m. He was then life flighted to St. Vincent's Medical Center in Toledo, Ohio. At 3:00 a.m. Dr. Patrick McCormick told me that Gary had a massive hemorrhagic stroke result of an AVM rupture. They rushed him into emergency surgery to evacuate the hemorrhage at 6:00 a.m. Three and a half hours later, they told me he had survived and that in a couple of hours I could see him.
Gary was not given very good chances of survival, there would have to be a second brain surgery to resect the AVM. I was standing outside of the recovery room waiting for the nurse to show me in and all of the sudden it dawned on me that it was our 3rd wedding anniversary. I kept asking myself how could this happen to a very healthy normal 34 year old man.
He spent 12 days in a drug induced coma and 5 weeks in a rehabilitation hospital and 4 weeks at home confined to a chair. Gary was completely paralyzed on the right side of his body and had very little speech. He developed blood clots in his legs and was not allowed to get up. The blood clots of course could not be treated because of the head injury but they did another surgery and implanted a Greenfield filter to prevent the blood clots from discharging.
On October 20, 1998 Gary was sent to Henry Ford Hospital under the care of Dr. Ghaus Malik and Dr. Patrick McCormick. He was getting ready to undergo the resection surgery. They predicted this surgery would eliminate Gary's chances of ever have a bleed again. His AVM was unusually large 5cm in diameter. After 12 hours of waiting they called me and told me he was fine. I went in to seen him at 1:00a.m. that day, I was so afraid it would be like the first time and he would not open his eyes, but as I walked in, he opened his eyes, squeezed my hand(with his right hand!) and smiled and said I Love You. That was the best day of my life. He has survived and he was going to make it.
It is now May of 1999 and with all of the tests and surgeries behind us, Gary is recovering. He still has limited use of his right hand, but his speech, right arm, and right leg are improving at an incredible rate. He will not be able to go back to work for 3 years, but he stays home and takes care of our three year old daughter, Allie and our German Shepard puppy, Lucy.
I think that he is an incredible man who has such a strong will to survive. I always remember what one neurosurgical nurse said to me when he came out of the first surgery, "If he wakes up and lives, he will never go home. He will have to live in a nursing home for the rest of his life." I would like her to know, he heard you when he was in the coma and everyday for the rest of his life he will prove you wrong.
Update 22 May 1999
Now that I have a little more time, I would like to expand on Gary's story and go into a little more detail about what exactly a normal human being with a good natured soul can survive. I hope this will help some of you.
After the initial details and 12 days in a coma...He officially woke up on a Thursday, I was on my way in from working half a day and a nurse walked out her name was Ann. She said "Cindy you need to come here right away." Of course my first instinct was "Oh, God, please don't let it be now, just a few more days, I just want to see him open his eyes and smile at me." As I walked into Neuro ICU at St. Vincent's, as dreaded walking around the corner, I did and there he was looking at me. He was confused and trying desparately to get out of bed. But when he looked at me, he knew who I was and he did smile and his eyes were open... Best news I had in a long time.
After 5 more days in ICU he was transfered to a step down unit. He spent 7 days there, trying to understand what had happened to him and being happy just to be alive. On his second day in ICU his son, my stepson, decided that he just could not handle all of the trauma and moved in with his mother. Gary has not seen his son since two weeks before the AVM blow out.
On the seventh day they moved him to Montpelier, Ohio. There is an excellent staff there who helped him tremendously. His favorite nurse was Kay. And if she ever reads this, part of Gary's recovery is due to the fact that she never treated him any differently than she would have a normal person. She was real not just a nurse but a genuine person with feelings not just statistics. After just 5 day in the rehab center Gary's mother, Linda passed away. Imagine the torture that his father and I went through having to tell him after all the progress he made. She got to see him with his eyes open 1 week before she died, but unfortunatley Gary does not remember her being there. He could not attend the funeral, and is still trying to grieve for her.
In November after the 2nd surgery AVM resection, Gary's favorite aunt also passed away. Her name was Eula and she was like Gary's second mother. It is so hard to believe that he has survived as long as he has and not had a complete breakdown.
Gary had no sight in his left eye. There was a vitreous hemorrhage when the initial bleed had happened. He just had surgery for that in April, Easter Weekend. For once, there was only success and no catastrophies. He has regained full sight in that eye and is doing very well.
He still has to take dilantin everyday. The doctors have now placed him on Celexa, which is an antidepressant, but our doc uses it for pain control. I think that finally the scar tissue is starting to grow nerves again and it is a very strange and painful feeling. So far so good, no bad side affects. His moods vary, but generally he is a very happy man. He is very thankful to be alive and with us, but his one passion is playing the guitar. Right now that is not a possibility, but I suspect that in the very near future he will play again. I cannot imagine a God that lets you win, and lets you live to take away a talent that he gave you.
He is starting to get bored, not enough to do. I am creating projects around the house for him, painting, porch needs refinished, lawn needs mowed, car needs an oil change, and so far he has accomplished every task I have asked him to do.
One thing I can say, is that I would not go back. Not for anything. This event in our lives has proven us all to be better people. He is a better husband and father and friend. I am stronger and happier with him now than ever before. Our daughter is a very happy smart child who adores her dad and encourages him every chance she gets.
Now mind you, Gary has not had any memory loss or personality change at all. We all just appreciate what is good in life, us. I think that in every day life, we get caught up in the go to work, come home, have dinner, read, go to bed scenario. We take advantage of every day we have, every minute. Because we know, like all of you, your whole entire life can change in a split second.
All of you keep fighting, that is Gary's motto, and I will check in again after his next appointment in July with the neurosurgeon.
Update 9 Jun 1999
Wanted to let you all know that Gary picked up his guitar today and played a little. He mowed the lawn and drove the car up the driveway. He is doing extremely well. He wishes all of you luck in your recoveries and we will chat in July or when the next "big, new" thing happens. God Bless all of You.
Update 18 Aug 1999
Well, here I sit after a very grim weekend. We went to see the neurosurgeon on Wed Aug 4 for an EEG (Gary decided he wanted to stop taking the dilantin) and went back on Aug 11 for the decision. Doc said that Gary has epileptic activity in his brain and will never be able to stop taking anti-convulsants. Which is OK, Gary has never had a seizure in his life, we go on as normal. We are talking about a man who has learned to walk and talk and function as a normal human being. He has started to gain his independence back - he is starting to rely on himself rather than others...until Sunday.
I was making coffee in the kitchen and walked out to the living room to see if he wanted breakfast and he was sitting in the chair shaking and called 911 and he stopped breathing and blood was running out of his mouth and he was choking and there was absolutely nothing I could do but wait. After the EMS arrived - I found out that Gary had a grand mal seizure. How can a person fight so hard to recover and then be trapped in his own life by epilepsy? Will he be able to drive? Can he go back to work? How can I leave him here alone? with our daughter?
He found himself a trainer - he is determined that he is going back to work (at something) and now will he be able to? The bad thing about this is there are no answers, I can not find any help. IF ANYONE HAS ANYTHING TO OFFER PLEASE, PLEASE WRITE ME. He is so tired today - he just sleeps and sleeps...I would hate for him to get depressed about this - but it is so unpredictable. I will write again after I find out more. God Bless everyone of you and keep fighting (we have to)!!
Update 12 Oct 1999
Finally some good happy news again. Gary is doing very well. (hope it lasts) Since the last update, he has dropped to the bottom of the canyon, rolled around for a while, hated everything and has started his climb back up. I have always thought that when people say, "Clinical depression" that it was a bunch of crap. Let me say I have witnessed what it can do to a human being and a marriage, and it is not crap. Depression is a scary thing that sets in and you don't even see it. We have had 6 very very hard hard weeks. This is worse than waiting for him in the hospital, but he (we) have turned a corner and are headed back to the right path now. We have not had a cross word in 7 days and we are happy.
He has started to deal with what has happened to him and go on with life instead of waiting for it to happen to him. He is creating projects for himself around the house and really making an honest effort to take up the slack. I have not done housework in over a week!! That includes laundry, vacuuming, bathing our daughter etc... He seems to have perked up more over the last week, than he has in the last year. He is going to the YMCA to work out about 4 days per week. Allie started pre-school this fall and he can not wait until Feb. 15 when he starts driving again, then he can take her to school. He has become a better "housewife" than I ever was! We have turned a corner to a better life.
They did inform Gary that with his deficits and the epilepsy, he will never return to work again. That was a hard pill to swallow, but he seems to be handling it better everyday. I just told him how lucky he was to be retired at 36. I will have to work for the next 25 years before I could even think about that. Now he can do what he wants with his life, instead of busting his butt for someone else. He has decided that when his guitar playing gets better, he is going to give lessons to kids that can not afford them. I think that is the best idea he has had yet.
All of you keep fighting and trying, because dreams really do come true and it really does get better.
Update 14 Oct 1999
Boy it never fails, as soon as I post good info BOOM! We went back to the hospital tonight. Gary had his second seizure. How does this happen when you take drugs to keep it from happening? Well, this time was not as bad, definitely not as much shaking. He did bite his tongue (yuck). We are handling it different this time. It just happened, I guess. No point in freaking out. Tomorrow, life as usual. One step forward and two steps back.
I want to thank everyone for their support and kind words of encouragement. I don't think I could have made it without you all. I have to call a neurologist tomorrow and they are going to adjust his medicines. I will update again when I have more good news.
Thanks again, and remember AVM survivors are the best kind, because they never quit.
Update 21 May 2000
Where do I start? It has been a tough tough year. After the last happy update in October, Gary decided that he was a doctor and stopped taking his anti-depressants. He did ok for about the first four weeks-then wow! What an all time low. He was unbearable and mean. Two days before my birthday he told me he wanted a divorce and that I was better off without him. All we did for six months was fight-everyday and I don't mean just normal marriage fights I mean bad fights. I finally talked him into counseling - did not help. Gary had become very good at masking his feelings and actual attitudes to the public. Only two people other than me got to see how he really had become. He had become horrible to everyone and lazy.
What made it bad for me was that his friends and family thought I was crazy. I would call his sister or his dad and tell them how he was and they would come and see him and he would act the complete opposite. He quit doing everything and started smoking again. (BAD) He would get up in the morning and sit in the chair and when I got home from work he would still be there. It was like he was living in a bubble and did not care what he did to anyone else as long as he was happy. In January we started to see a neurologist and they switched his medicine to Depakote and took him off the Dilatin completely (over a period of time). After that he would have one or two good days instead of all bad days.
I started to feel bad - I was sick all the time, had headaches, couldn't sleep, couldn't eat - I just felt bad. So in April I went to the doctor and he diagnosed me with depression. What a blow to my ego. I thought I had handled all of this so well and now they tell me I am depressed. But I did learn some important things about depression. The brain is like a muscle and when it is over worked it will get fatigued just like any other muscle. My brain is on overload. So I started taking anti-depressants and what a difference. My moods improved and everything that Gary was doing and not doing, did not seem so tragic.
Well, then he felt bad and went back to the doctor. He began to finally see what he was doing and had noticed some other functions of his life were not functioning so well. He went back on his anti-depressants voluntarily and has been on them for about a month. HUGE difference!!! The bubble that he lived in for the past year finally has a hole in it and he can see the outside. We have not had one single arguement in three weeks. I got it through his thick head that smoking is bad and he has been smoke free for six days. Not sure how long it will last, but I keep praying.
All in all we have turned that big corner for the last time (I hope). I have learned that AVM survivors not only have to survive - but that families become survivors as well. I just want all of you to know that in the long run, it is worth it. When you stop and look at the big picture, life, money, homes, cars, careers, families, babies, mother-in-laws, etc. none of it is worth it without love.
Gary is back in therapy now and doing well. He had two more seizures in March so it will be a whole year before he drives, but he is running now. Not great but he is doing it and he is starting to feed himself with his right hand and play his guitar a little. He is learning to set goals and remember to think about the feelings of others.
We are making our big move to Columbus, Ohio next weekend. A bigger city will give him a little more freedom. I have a better job making more money, which always helps and our daughter is going to get to attend a great school. My goal when we leave here is to leave all the bad things here and close the book on this chapter of our lives. Gary is a survivor and he is starting to act like one, instead of being a disabled person. We attended a seminar about financial issues the other day and someone asked him what he did for a living and he said, "I am retired." I think my husband is finally returning to his life. I missed him so much.
Just remember no matter how hard it gets, if you are willing to work at it - anything is possible. God Bless everyone of you.
Update 3 Aug 2000
At the end, Gary had become a different person. He had gained about 40 pounds and was smoking almost 2 packs a day. I just refused to believe that he was not who I thought he was. He had not worked out in almost 5 months and refused to do anything. He was not being a good father or husband. Gary walked out of our lives on July 3. He is living in KY right now with his Dad and rest of his family. He does not call to talk to Allie or try to fix things. I filed for divorce last week and we go to court at the end of August.
I want all of you to know that I still do believe that love conquers all, I still believe in faith and goodness of all people. I still believe that anybody can overcome any possible thing that happens to them with the support of family and friends. But both parties have to be willing and both parties have to sacrifice and deal with the ordeal. Please keep believing in the person in your life that has suffered a major brain trauma - as long as they believe in themselves and you. It works both ways. Everyone keep fighting and I will pray for all of you.
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