I am a 35 year old female. At the age of 30 I underwent surgery to remove 3 AVM's from the right side of my brain as well as removing a brain tumor. Life since that day in June 1998 has not been the same. . . but life is good. I am happily married and have 2 incredible teenage boys. Life is grand. . . because God is good. . . ALL the time!
While At A Ball Game
12 March 1999
I am a 31 year old mother of two. Last June, while at a ballgame of my oldest son, I slipped in mud and fell, hitting my head against a telephone pole. After a few minutes, I began to lose focus and was going in and out of consciousness. I was taken to the emergency room, where I was told I had a concussion. I was given a CT scan where "something looked funny".
A neurologist was called in and I was told I had what looked like AVM on the brain. I was alone at the time. My husband had not yet arrived from work. I had no idea what AVM was. After I was given that news I was left alone for about 15 minutes, but it seemed like an eternity. I finally was spoken to by a nurse who I asked if she could please explain AVM to me. She did. I became extremely frightened.
Shortly thereafter, my husband arrived. He had recalled that term being used on a friend of ours , who had passed away one year prior. Now I was even more nervous. We soon met with the Dr. and scheduled an MRI. That proved the doctor's thoughts. He told us it was a fairly large malformation and suggested surgery.
Plans were made for me to undergo a 4 hour surgery. The surgery lasted 7 1/2 hours. Once in my brain, the doctor found not 1, but 3 malformations, and a tumor on the right side of my brain, near the part of my brain that would control my vision. The surgery was successful! No ruptures during the surgery and the tumor was tested negative of cancer!However as a result I lost 85% of my field of vision. This was in June of 1998.
I have not driven a car or been anywhere alone since that day. However I have taught myself to read and write to the best of my current ability! It is a slow process, but one I am determined to overcome.
I give God the credit for my life. Without him I had no hope! I have also suffered some memory loss problems and some problems communicating. But overall I am a survivor who is blessed to be alive! I would love to talk to other people who have dealt with AVM. I think we all have a connection. Even the best supportive families,(and I have a great one)! don't understand how we feel, so that is why a support group is important to me.
Thank you and God bless you.
Update: 25 Apr 1999
As you all know by reading my narrative, I lost 85% of my vision as a result of the AVM surgery. I had been to several doctors to see if there was anything they could do to help me. Time after time I was told "No Kelli, you will have to live with this. You are legally blind". With the support of my husband I kept pushing on. Otherwise I would have quit a long time ago. He would say we will go wherever we need to go and do what ever we need to do.
Finally the last time I visited my regular opthamologist, I was having a bad day and the tears started coming and I said "Please help me see, this is a brain problem and not an eye problem, so a regular eye doctor either didn't know how to help or wouldn't. " So my doctor said, "I will see what I can find out and I will call you. "
About 2 weeks later he sent me some info in the mail about these special glasses that were designed specifically for a guy who had lost his vision due to a brain njury. I was excited then I read the bottom of the note that said my doctor was not sure where to get these glasses or how. I was sad again, but he suggested I try the Medical College of Virginia. I live in Virgina I did. After about 5 phone calls and 5 explanations to what I was looking for someone said, "Oh I know what you mean and you need to call this number. " I did and met a specialist in low vision. That was 3 months ago.
Last week I went back to have The frames ordered for my miracle glasses. That's right, with these glasses I can see everything in the room, something I have not done for 10 months. So I call them miracle glasses. They have a prism in them that moves what I don't see over to what I do see. Amazing to me but I am so excited and so grateful to this doctor I can not express it all.
I have all the info for anyone else who may be interested. I have the name of the company who makes them so they could probably tell you where to find them allacross the country. I should have the glasses by May 10th. I will update you all then. I am so thankful to God for giving me the strength to continue on for an answer and my husband for making sure I did. If I can help anyone else with this info please let me know.
Update 17 May 1999
I went to get my "miracle glasses" a couple days ago. So far so good but it will take some time to get used to them as I never wore glasses before in my life and these are not normal glasses. They have the prisms in them but are actually pretty attractive and do not look too "different". I am very excited about how this will change my life and give me back my independence and security again. I lost those things after losing my vision.
The first thing I saw was my husband and I saw his whole face again for the first time in almost a year. It was very emotional and exciting. I cried of course, then I came home an saw my beautiful boys. I cried again. This is still amazing to me that these glasses can fix something that happened during a brain injury. I also read correctly, slowly but from left to right instead of backwards like I had taught myself to do. Using this computer is tricky with the glasses but it will all come eventually. I am believing that I will get better and better with these glasses and that even one day I will be able to drive again. The doctor says it is a real possibility. The glasses do not make my vision like it was before, but that is ok with me I will get used to it all and I just feel blessed to have came this far.
I give all glory to God. I know he provided the direction in which I found this great doctor and these special glasses. My life has changed so much this year, but I am finding that it is through these times that God uses our situations to introduce us to new people and new lives. I love my life and know that whatever comes I can handle it cause God promised nothing more than what I can handle. I hope to encourage others to never give up trying to overcome the obstacles that come after brain injuries and surgeries. It is with each day that we are given, that there is another day full of hope.
God bless you all. This group has been wonderful to me. I still have things to overcome, but I intend to do just that. . . . OVERCOME!! I will keep you updated as to how the glasses are working. With much joy and reason to smile
Update 7 Jun 1999
It is with MUCH, MUCH EXCITEMENT that I send this update. It will probably be the most amazing update I ever send you. As you may recall I lost 85% of my vision due to the brain surgery I had and was blessed to find these amazing glasses that I have had only a short time, but they were doing great. Well here's the news. . . this morning when I woke up, I could see completely with no glasses! I know this is a miracle from God above. There is no explanation for it. I have been told over and over that I would never see again because that part of my brain is gone. Well any one in this group who knows what the Lord says, knows that we are to believe the Lord's report and not man's. If I believed man's report, I would not have even found the glasses. Now I don't need them! There is no explanation other than the fact that my eyesight has been restored by God Almighty! He is faithful to do all things!! I can not wait to call my doctor in the morning. I am expecting some doubt from him, but not worried. I know God heals! I am proof! I pray that your faith is renewed by this testimony of healing and that you all remember. . . God made our bodies, so who better to fix them? God bless you all and I share this only to encourage others that all things are possible to them that believe in the Lord!
I AM BLESSED, BLESSED AND BLESSED.
Update 21 Jun 1999
I would like to start by saying that this group of people is the best. I thank you all for the kind words and support you have all given me in celebrating my healing!!!!! It has been one year and 5 days since my surgery. I wanted to update on that day, but have been so busy enjoying my eyesight and on that day I celebrated. Last year was not so good, so this one was a celebration of life and family.
All in all I am in good health. I am enjoying my life and getting back to normal. That is something I was afraid was in the past. I am not the same but that is ok. I am still so very blessed and hope that I never forget that for one day. I have not been given the ok to go back to work yet, but hope that will come soon. I still take some medications and find that fatigue is still a big part of this recovery. I still have some memory problems but my communication problems are much better and not very noticeable at all.
I am doing so well and just wanted to encourage others that there is life after AVM's and brain surgery. Life can be good again. I am living proof of that. God takes care of me and I give him all glory and thanks for the life I am blessed with. Without him I would have nothing. He puts the joy in my life and a smile on my face. For those of you who may be discouraged or feeling like this is the end, I am here to say it is not. I felt like that last year on occasion, but I soon learned that yes, it is ok to feel down when these things happen to us. We are only human, but it is when we stay down that becomes the problem. If we all just take a minute to look around, I know we can find things everywhere to cause us to keep going. Family, children, spouses and the thought of a God who is as close as the mention of his name. Life is good. God is good. All the time.
Love to you all.
Update 1 Oct 1999
Hi everyone,well this update is probably not as exciting as the previous but I'm trying real hard not to complain or worry. For the last couple months I have been having terrible headaches. Much worse than ever before. I have had seizures and more and more times where I couldn't talk or communicate. I would get very disoriented and even forget where I was and what I was doing. My memory would also seem to be worse at times. Usually this would all occur during the bad headache.
CT scan revealed that I had swollen blood vessels in the same area as the 3 AVM's were before. I was put on a medication to try to reduce the swelling and told not to worry. Not easy to do. I was told I had a lot of scar tissue and that accounted for the memory loss, speech problems and communication problems and so forth. I was told I had a lot of scar tissue and that one part of brain had not healed quite like he had hoped it would have, being this long out of surgery. My skull is not back together quite like he hoped either. Actually there are some gaps that I can feel. My hair covers them but it sill feels weird. It hurts sometimes too in those particular areas. Especially when it is cold !!!
I had another CT scan done a month ago and went back to the doctor yesterday for my results. Same thing. Swollen blood vessels in this same area and was told that is why my head is hurting so bad. I was put on another medication of which I was told will cause me to gain weight. I had already started gaining from the last medication and wasn't thrilled with that news but was more concerned about why this swelling will not go down. The doctor says he is also concerned and is going to soon repeat the test but for me to try to relax and not worry. How can I do that??
I had also had an EEG and that showed seizure activity so my medication was increased and I was told not to be surprised if I had another seizure. For those of you that have seizures, you know how frustrating it can be. I hate for my children to see me like that.
My blood pressure was also high so that medication was also increased. I know that high blood pressure can cause headaches so I am hoping with all this new medication and changes in the old ones, that I will soon see a change in these headaches. I feel like I have taken two steps forward and one back. Has this happened to anyone else?
I am not one to complain or feel depressed about my situation. I know I am very blessed, but for some reason I can't help but worry about what will happen next. Each time I get a headache I wonder if it is another AVM. Yesterday I was alone when I got all this news and I felt like I was on the outside looking in. I just felt kind of numb. I know this is not terrible news, but I just thought that AVM was a thing I put behind me and that I was on my way back to being normal again. Now all of a sudden I feel scared again. I know I have no right to complain. I won't stay down. I made it before. . . I will again. I am so blessed and I will never forget that.
I was not released to go back to work and I don't know what the outcome will be but I know God has a plan and that I have to trust him. Just wanted to update the group. I appreciate all of you so much. This is a great bunch of people. I have made some wonderful friends that I hope to have for along time. I'll keep you all updated.
God bless you all.
Update: 9 Feb 2003
Hi everyone! I first want to thank all those that have kept in touch and wondered how I was doing. It's been awhile since I have written. . . so it's time.
Let's see. I have moved from the Virginia Beach area to Ohio. I am from here ,so although I miss the beach, this is home.
Over all I am doing fine. I still have some memory problems. I often wonder if that will ever get better but I deal with it. I think the speech problems I have are the hardest for me. Sometimes I will be just talking away and then all of a sudden. . . no words. I just can't seem to get them out. Very frustrating! I laugh at myself most the time. But sometimes I really get embarrassed.
I went thru a period when I was having constant seizures. Was hospitalized for a while. That was hard. I had no idea who a lot of my family was and where I was. It was scary. I have a wonderful husband,that never gave up and prayed a lot. I eventually, with medication and much determination and prayer got better and it has now been a little while since I have had a seizure. I find that I have more seizures under stress. More headaches too. I have accepted that, for the most part I will live with headaches and seizures for the rest of my life. So I still take the necessary medications and keep on keeping on!
I have a lot of skull pain from the metal screws and plates in my head. Being back in Ohio where it is so cold right now makes it worse. I am told that removing these screws is not an option for me though. My last angiogram says that I still have a lot of scar tissue but the 4th malformation has not grown or moved so no surgery in sight for me, and I am not complaining. My eyesight is still pretty good. No glasses needed. I have blind spots sometimes but find that is usually after a seizure or on those "killer headache" days.
I've had a lot of stress in my life this year. We lost our home and all we had to fire. Lost a family dog of 14 years in that fire. Lost grandparents and family members and a few friends to death. My oldest son has been having some kidney problems and only has one kidney. My dad has bladder cancer and has just had surgery. Life throws us curve balls all the time. For me. . . I thank God for the valleys too. I grow and learn thru difficult situations. Do I understand? No. Not always but that is not my place to understand. Just to trust that God is in the midst of all these things. He will never give me more than I can stand. So I lean on Him, rest in Him and count on Him and He is always faithful.
Over all things are great! I laugh and sing and pray my way thru life. I am so blessed and so happy to be where I am today. Yeah,life is different after brain surgery and I have accepted that but hey. . . . . the key word is "life". I enjoy mine. God is so good. . . . all the time!
So that's about it. I pray for this group everyday. You guys are awesome! Ya'll hang in there and keep the faith. . . it makes a huge difference!
Update: 08 Nov 2003
Hi everyone! I pray you are all well. Just wanted to kinda up date everyone. I have intended to rewrite my narrative several times but life gets busy. So here's the latest.
I am now a full time college student. . . yeah! Studying to be a special education teacher and I love it. It's hard work but as of now I have a 3. 46 GPA. I have a lot of aids that help me with reading and studying as I still struggle sometimes with memory and speech but I'm hanging in there.
Life has been pretty good recently. My boys are growing so fast. Oldest one joined the Army this summer and although it was extremely traumatic as a mom to see him leave, I am overjoyed with pride that he is choosing to serve our country. My youngest has just received his learners driving permit so he wants to drive every where we go. They are both the joy of my life. My husband is my biggest support ever. According to him I can not fail. He has every confidence in me. He's the best. So why I am writing?
Well...been having horrible headaches again...in fact worse then ever before or after my AVM surgery. I can not function with this pain. I vomit and sometimes get to the point where I feel I am going to pass out. I brushed it off at first...having one here and there over a few weeks time span...but then they started coming more often. I thought "ok...this is stress. Finals are coming up next week in college and I am just working too hard". Then the headaches were coming 3 or 4 times a week. So I finally decided to call the doctor. (I can be stubborn...haha). I might add here that I have also had what seemed to be an ear ache for a year now. Antibiotics have done nothing...yet I never have a fever and my inner ear is never red. Just always fluid there. So this really concerned the doctor and I am still not sure if or how it ties in with my headaches. All my pain is always the left ear...left side of my face even draws up sometimes and my headaches are on the left side. I have had 3 AVM's and a brain tumor so these headaces I am having now worry me. There's a 4th "something"...not sure if it is AVM or "scar tissue". Having a Angiogram Cat scan and an arteriogram soon.
God has been so faithful to me and He has kept me and restored me from this AVM business before so I am fully aware "if" there is a 4th...He can take care of things and I have faith He will. But I would be lying if I said I am not a little concerned. I am so blessed with a wonderful life and a great family. I guess I am hoping for a diagnosis of "Migraines"...although I am sure that is not fun either.
I am not one to complain usually and I'm not trying to now...just a little nervous feeling and wanted to vent maybe you could say, by updating and sharing with you all. I have some great friends in this group (all thanks to Doug Blouir who introduced me to this site)...who are encouragers and praying people...So...if you all could just add me to your prayer list, well I would appreciate it and I will keep you all informed.
Thanks for taking the time to read my update and thanks for being the best support group ever. God bless each one of you richly.
Discussion, comments, or questions: Kelli
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