Hi, Mary. Hope you and Tim are well!
Just a quick question: Which doctor/who did you go see for Tim's vision in Atlanta, GA? Is he/she a neuro eye doctor, optometrist, or (regular) opthalomogist?
Phani said:
My wife is diagonized with an large sized AVM in her left inferior occipital pole of her brain. She had two embolizations and so far she is doing good but suffers from severe headaches. The doctor had warned us of losing right peripheral vision or loff od rtight visual field. My question is, did any one has the AVM in this location? and, what exactly happens when we loose right peripheral vision?
Thanks,
Phani.
Hi,
As a child, my daughter lost her right vision, meaning that center-to-the-right in both eyes is gone. Fifteen years later, she has graduated from college, drives a lot in her job, lives a very productive and normal life. From time to time she bumps into something on her right, but that's about the only time she notices her vision loss.
Hi Nancy, Im so sorry about your daughter inlaw.. I think the older you are the more devastating.. you've had soo much time being who you are, and than the world all changes. Tim couldnt be left alone his first 2 years after the surgery, with intense therapies for mobility and therapies to get him to relearnt he simpel things. Without fighting for those, because NO ONE wanted to help.. they just wanted to send him home to me. Im a single mom of 4, I quit my job.. cashed in my 401 and lived off the money until I could get him back up and moving. It was the hardest time of my life, but getting him labled legally blind and disabled did change alot when it came to intervention. I feel for you all, cause it is not an easy road!! Does she do therapies?? At first they gave him a walker so he could move without physical assistance.. I live in NY and they do not like to help here at all, but I got the governor & senator's attention and wrote letters, called and called and called until someone would answer me. I refused to take NO from anyone, and in the end, I got him alot of help. But you have to research and research all on your own, because No one will help or guide you...in someway they leave you as if you have a degree in medicine and know what to do. I felt LOST, Tim has come a long long way, but his life is a struggle, and his disablilites are a battle.. I hope you find the answers you are looking for. I wish you all the best, and will add you to my prayers.. Your doing the right thing by reaching out here.. this site has helped me in more ways than I can ever explain.. always ask questions!
Mary (Tims mom)
Nancy said:
My daughter-in-law's AVM is the largest her doctors had seen 20 - 30 arteries feeding into the AVM and is also in the left ocipital lobe, in 2001 she had the gamma knife procedure and embolization; neither procedure worked and nothing further was recommended. In 2009, she suffered bleeding and stroke like symptoms, in 2010 a different type of embolization was done using tiny coils which was somewhat successful. The after effects have really been devastating without complete recovery. She is unable to maintain her balance or walk without assistance, visual, speech and memory problems. The pulsing of the blood flow was audible and had stopped but is again audible. This is all difficult enough but the children just don't seem to understand the seriousness of this or even accept these changes. Worst of all, no one offers any solution. She was a talented nurse and now completely disabled. It is a heart breaking situation and we all feel very helpless. Her husband can't work, because she can't be left alone; I don't know where they can turn. We live 1000 miles away........i just found this site and was hoping to get any insight that would be helpful.
Hi Cindy, sorry it took so long for me to get back, His name is Dr. Gottlieb, he is in Stone Mountain Georgia.
His visual system is world reknown, and has changed Tims life dramatically and continues to do so.. Yes he is a neuro eye Dr. Thats why I seeked him out he works with the trauma to the brain (thru surgery, accidents) and than works with the visual loss. He is an amazing man!! This is his email, he has a great web sight also To contact Dr. Gottlieb, call (678) 417-9778. or email drdannygottlieb@gmail.com
If you contact him tell him Mary Peterson referred you (Tim Peterson's mom).. go to his web sight just google Gottlieb Visual Group Are you thinking about contacting him!! Keep me posted Cindy..
Cindy Phillips said:
Hi, Mary. Hope you and Tim are well!
Just a quick question: Which doctor/who did you go see for Tim's vision in Atlanta, GA? Is he/she a neuro eye doctor, optometrist, or (regular) opthalomogist?
Hi, Mary. Thank you SOOOOOOOOOOOOO much for the information. I have an appt. with a Double Vision Specialist in the morning to see if I can get some relief on this double vision that I’m still having. (This Double Vision Specialist appt. came as a referral I got when I went to my appt. (for double vision) with a very-well-educated neuro-opthalmologist at Emory Eye Center (which is part of the Emory Hospital facilities) in mid Jan. 2011.) I am sooooooooooo desperate for visual relief and am extremely tired of appts. with ‘additional appts.’ (AKA: told to come back for another appt. or referred to another doctor which means ANOTHER appt.) and no real/helpful ‘results/outcomes’ of the visit for the problem. I will be checking into this doctor either way… thank you SOOOOOOOOOOO very much!
Mary Peterson said:
Hi Cindy, sorry it took so long for me to get back, His name is Dr. Gottlieb, he is in Stone Mountain Georgia.His visual system is world reknown, and has changed Tims life dramatically and continues to do so.. Yes he is a neuro eye Dr. Thats why I seeked him out he works with the trauma to the brain (thru surgery, accidents) and than works with the visual loss. He is an amazing man!! This is his email, he has a great web sight also To contact Dr. Gottlieb, call (678) 417-9778 begin_of_the_skype_highlighting (678) 417-9778 end_of_the_skype_highlighting. or email drdannygottlieb@gmail.com
If you contact him tell him Mary Peterson referred you (Tim Peterson's mom).. go to his web sight just google Gottlieb Visual Group Are you thinking about contacting him!! Keep me posted Cindy..
Cindy Phillips said:Hi, Mary. Hope you and Tim are well!
Just a quick question: Which doctor/who did you go see for Tim's vision in Atlanta, GA? Is he/she a neuro eye doctor, optometrist, or (regular) opthalomogist?
I am in the same position as your son. If you look on my page I have a blog about my AVM experience. Depression is common because we are upset that we are not who were used to be. My first AVM was removed when I was 13, and I had a hard enough time dealing with that let alone the pressures of high school. AVMs make us unique and therefore we become unfamiliar to those people around us. What really helped me get through was knowing that there were people out there who knew exactly what I went through. Is your son a member of this group? Maybe you should bring him to the AVM walk in California so he can meet us and begin to move away from his depression. Does he have a facebook? I can contact him directly if you would like. I like to affect change in the lives of our youth and I already have somethihg in common…
hello,
When is the AVM walk in California?
I imagine it’s even more difficult on a teenager. They’re so worried about how everyone sees them, and they want to be seen as just like everyone else. Short term memory loss and sight problems are a real pain - makes everything difficult. And it’s more difficult when you had it before, and now it’s not as good as it was. I have some struggles dealing with that sometimes. Can he find a way to use this difficult experience to help others? I wrote a book (Unstoppable Life) and I’m out doing seminars and helping others dealing with death or just wanting to have a better outlook on life. As much as I want to help other people (as I see just how precious life is after my experience), it was also selfish…I needed to feel that all this was meaningful and I could use it for good. Perhaps that would help him. Just a thought.
There was one last year. I am not sure for this year.
phanivas vemuri said:
hello,
When is the AVM walk in California?
WOW! I was thinking of doing the same thing. How did you get started? I wanted to focus on high school students because that is when I had my first AVM and it was so hard getting over the emotional effects of the surgery and the things I dealt with in high school.
Kat Sanders said:
I imagine it's even more difficult on a teenager. They're so worried about how everyone sees them, and they want to be seen as just like everyone else. Short term memory loss and sight problems are a real pain - makes everything difficult. And it's more difficult when you had it before, and now it's not as good as it was. I have some struggles dealing with that sometimes. Can he find a way to use this difficult experience to help others? I wrote a book (Unstoppable Life) and I'm out doing seminars and helping others dealing with death or just wanting to have a better outlook on life. As much as I want to help other people (as I see just how precious life is after my experience), it was also selfish...I needed to feel that all this was meaningful and I could use it for good. Perhaps that would help him. Just a thought.
I don’t kow if this helps, bbut you son’s experience sounds similar to my own. I am not male, but I too was very happy-go lucky before. Now I heel the weight of the world on my shoulders…My left side is paralyzed which doesn’t help my mood I’m sure!It has been almost 2 years since my rupture. I am just now begining to feel comfortable in my new skin*** Something very encouraging in my case is Vocational Rehabilitation is working to place me in a paid position to facilitate a career. More than anything I look forward to this new opportunity, A fresh start , you may consider contacting your state’s VR for your son to see if a career-path is available to him!
Hellooo:)!! I’m 20 years old and just had the surgery done less than two weeks ago. I couldn’t imagine how scary that was for him to wake up from the surgery in those shoes. Bless! My AVM however affected my vision BEFORE my surgery. Where the arteries and veins are all tangled up in your brain; they have a big ‘drainer’ vein, draining all that building up mess. My AVM had Two of these big drainer veins; literally causing it to drain soo much, it was sucking blood from my right eye and about once a week I would go completely blind in my right eye for about five to seven minutes. This lasted for about two years. Anywhere I was. In class, at work. Going down the road. haha, No mercy. Of course, this is how I realized something was wrong. Other than my migranes. But being a young female, haha, I figured that could be the cause of a THOUSAND of different things. But thankfully I did have that 2nd drainer vein. Although it was very annoying for a couple of years, I would have never known anything about my AVM otherwise. I just had the open skull surgery April 7th, 2011 and it went wonderfully! POSITIVE THOUGHTS, prayer, and keeping faith are the most powerful things in the world, the mind is soo strong!! Your son is young his body is still sooo strong!!! I just know things will look up for him!!! He has already shown what a strong fella he is by what he has already been through!!! I am only encouraged to see and hear more on how he is doing!!! I would love to get to speak to him myself!!! But if this is something that he doesnt know that you wrote about I totallly understand that too!!! You are a wonderful mother Mary, keep me posted! The sun will peep over those trees you just wait and see!! =)
Hi Mandy,
Im sorry it took so long to get back.. I find when my life is overwhelming I tend to run away. Im so sorry for what happened and relieved to see that the surgery went well.. I would love for you to talk to Tim, his email is robotmascot08@gmail.com. Just tell him you are from this AVM websight. I talk about it to him alot, the people I have come to know and the information that I have found here that I havent any where else. He has recently been doing emotinally better, but his changes are an everyday struggle. I can not imagine just suddenly loosing vision thourghout the day with out warning, how very scarey for you. Funny though as a woman, we do contribute things that are wrong with us as a "female" thing... Tim suffered dibilitating migranes that did leave him with minimal vision but we were told that was normal.. Im not sure how loosing your vision for 3 days at a clip and not being able to move is normal, but thats what we were told. He attends a Culinary college in Rhode Island, and it has not been the greatest experience so far. Tim too is 20, and finds himself so different than his peers. But we fight to keep life moving forward. I think the depression and inability to sleep is the hardest. Heaven knows if you dont get rest how hard it is to function. The neuro surgeon warned us about this side effect and I have researched some natural ways to try to remind the body to rest... How is your vision now?? after your surgery do you have any physical challanges.. Tim lost his right visual field.. reading is all but impossible. We did get him to georgia for help and that has been a huge help... I hope that you continue to heal and do well. Keep me posted but again feel free to contact him.. I still feel that he would benefit from talking with people who kinda "live his life". He always feels like the freak.. and I keep telling him how much this sight has helped me to understand SOOO much! He is not alone!! Thank you for reaching out to me (us) Mandy, and I wish the best for you and will add you to my prayers! Your right postive thoughts and hope is a key in helping get through!! I have seen that sun peek over the tree tops, its just not ready to stay there :) but I never give up hope and I have enough of it for the both Tim and I and anyone else who needs it!!
Mandy said:
Hellooo:)!! I'm 20 years old and just had the surgery done less than two weeks ago. I couldn't imagine how scary that was for him to wake up from the surgery in those shoes. Bless! My AVM however affected my vision BEFORE my surgery. Where the arteries and veins are all tangled up in your brain; they have a big 'drainer' vein, draining all that building up mess. My AVM had Two of these big drainer veins; literally causing it to drain soo much, it was sucking blood from my right eye and about once a week I would go completely blind in my right eye for about five to seven minutes. This lasted for about two years. Anywhere I was. In class, at work. Going down the road. haha, No mercy. Of course, this is how I realized something was wrong. Other than my migranes. But being a young female, haha, I figured that could be the cause of a THOUSAND of different things. But thankfully I did have that 2nd drainer vein. Although it was very annoying for a couple of years, I would have never known anything about my AVM otherwise. I just had the open skull surgery April 7th, 2011 and it went wonderfully! POSITIVE THOUGHTS, prayer, and keeping faith are the most powerful things in the world, the mind is soo strong!! Your son is young his body is still sooo strong!!! I just know things will look up for him!!! He has already shown what a strong fella he is by what he has already been through!!! I am only encouraged to see and hear more on how he is doing!!! I would love to get to speak to him myself!!!! But if this is something that he doesnt know that you wrote about I totallly understand that too!!! You are a wonderful mother Mary, keep me posted! The sun will peep over those trees you just wait and see!! =)
Kat,
I feel at some point yes, Tim will help others. Wehn he was in the rehabilitation center for those 6 months, he was amazing with the other patiens. His two roommates had brain trauma injuries from car accidents, so though they didnt suffer and AVM, they had similar neurological issues, though Tim didnt remember much after his surgery he remembered how to play the piano, so he would sit for hours with the kids around him and play and show them what to do.. it was so wonderful, and hopeful that eerything else would come back to him eventually. I think for Tim he hasnt accepted his "new" self, and until he does actually reaching out to help others is too hard. It takes so much for him just to go to class and get through his day... Thas wonderful that you have done that, and as a mom who has lived this, I know how reaching out to others has helped me! Best of luck with your book, Im going to try to get it on my kindle.. and in no way its selfish!! I tell Tim that this happened for a reason and that he is meant to do great things... for you to reach out to help others is selfless!! Best of luck and keep us posted!!
Anita Hopson said:
WOW! I was thinking of doing the same thing. How did you get started? I wanted to focus on high school students because that is when I had my first AVM and it was so hard getting over the emotional effects of the surgery and the things I dealt with in high school.
Kat Sanders said:I imagine it's even more difficult on a teenager. They're so worried about how everyone sees them, and they want to be seen as just like everyone else. Short term memory loss and sight problems are a real pain - makes everything difficult. And it's more difficult when you had it before, and now it's not as good as it was. I have some struggles dealing with that sometimes. Can he find a way to use this difficult experience to help others? I wrote a book (Unstoppable Life) and I'm out doing seminars and helping others dealing with death or just wanting to have a better outlook on life. As much as I want to help other people (as I see just how precious life is after my experience), it was also selfish...I needed to feel that all this was meaningful and I could use it for good. Perhaps that would help him. Just a thought.
That Is a very hard topic to deal with my left side has become partially paralyzed after my surgery and after one semesterof College I couldn’t handle it anymore because of depression. I partially understand how your son must feel. I can’t ride a bike or run, or what my real passion was in life hang lights in a theatre. I have days that those things get me down really bad and I just want to curl up in a ball and cry. But i’ve found that what I need to do is find other things that I love to do, such as camping or enjoying the stars or instead of hanging lights teaching other people about how to hang lights, its difficult, he may never be as quick as everyone else around him again, and that will be what will hurt the most is the feeling of not being able to live at the same level of other people. Just keep the communication channel open and have patience, if he says anything about being slower than everyone else, just tell him its ok, its ok, from one teenager that has had to deal with an AVM to the Mother of another just let him know its ok.
Hi Lena. My name is Renee. I am 37 and hbe an avm on my right lower cerebellum too late to operate. Thinking about cyberknife. Have you thougt about not doing anything at all? I fighting with it right now. I found out in march 2009 and have been around the gammut talking to different doctors. I’m jut not sure anymore. It’s been surgery, no surgery, gamma then surgery then go see another doctor. Then I her all the stories of people with their side effects. It scares me. Just wondering your thougts?
Lena Court said:
Bless you, I am so sad reading this, I couldn’t not reply.I can’t give you any advice, i am just starting out on this AVM road, only just diagnosed at 36, waiting for Gamma knife.
It’s heartbreaking how this has affected your son, I hope you find some information and advice. Sending you a hug. X
Hi Lena. My name is Renee. I am 37 and hbe an avm on my right lower cerebellum too late to operate. Thinking about cyberknife. Have you thougt about not doing anything at all? I fighting with it right now. I found out in march 2009 and have been around the gammut talking to different doctors. I’m jut not sure anymore. It’s been surgery, no surgery, gamma then surgery then go see another doctor. Then I her all the stories of people with their side effects. It scares me. Just wondering your thougts?
Lena Court said:
Bless you, I am so sad reading this, I couldn’t not reply.
It’s heartbreaking how this has affected your son, I hope you find some information and advice. Sending you a hug. X
Mary,
I apologize for just coming across this post but I wanted to write to you and let you know that neither you or your son are alone in this. I think we all go through bouts of depression due to the fact that our lives have been turned completely upside down. I'm currently 26 years old and my depression comes from the fact that I can no longer drive, am divorced, have moved back home, lost my job and have many other physical and cognitive limitations. All because of the onset of my AVM. I can look at these things as negative or positive and the decision on a daily basis is mine and mine alone. I am the one who controls how I feel. Not necessarily in control of the situations that make me feel but the way I feel is my own choice. I will keep you and your son in prayer. He has so much to live for. It may not see is he feeling emotionally and physically now? How is the therapy going? I hope well. Best to you and God bless.
Jessica
I am so sorry. I am 41 and have recently (June 24,2011) been diagnosed with an avm on my right frontal lobe. I am preparing for embolization, brain mapping, craniotomy and anteriogram…back to back. I am scared. I read your post and wanted you to know I will be praying for your son and your family. Any tips? I really don’t want to wait and then have an anurysm or worse…
Thank you Jessica for your thoughts and prayers, they are always welcome. Tim is better, therapy helped, but I think just coming to terms with himself and his limitations is h is personal battle. He has good days and bad, though good has out weighed the bad lately, so I thank god for those days, pray that they continue to out number the bad. I just try hard to talk him through his pain at the moment.
I think if he could get through college, which is for him a painful struggle. The professors and classmates arent always accepting… and it makes what is already a mountain climb a while lot harder. But he wants his degree and wants to work, so that seems to keep him fighting…
I wish you the best too, keep us posted. Its so nice to have this sight and to reach out to people who really know what your feeling and going through!
Bless you
Mary