My 15 year old son had an AVM in his left ocipital lobe, they did 2 emolizations and than a 15 hour open surgery to remove it in 2008. He lost his right visual field and is legally blind now, has reading and processing difficulties and memory losses, short and long term. Since his surgery and waking a different person, he experiences sever depression and sometimes talks about not wanting to live. Has anyone eles expereinced this themselves or anyone that they know. He of course is in therapy, but that doesn’t seem to make his feelings go away. He was the happiest go lucky kid before this. Loved life and all the challanges it had to offer, but thats not the case any more. Does this happen to everyone?? Im scared for him and what the future may hold. Any adivse would helpful>>>
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
I feel for you. Our son had two brain surgeries for epilepsy, but in his case, it was more successful. I understand your fears.
Depression is a very common side effect even when there are no deficits from surgery. Him getting therapy is a very good deal. Does your therapist know how depressed your son is? I would point that out to him/her just to make sure.
It’s very difficult to find motivating people, but my wife (had an AVM and a severe limp from it) went to physical therapy until she plateaued. When you stop making progress, you are done as far at the PT’s are concerned. We found a personal trainer that is 53% Angel and 47% drill instructor. She is the most positive person I’ve know. She did a lot of study in my wife case, even getting our permission to review her physical therapy files so she would know which muscle worked and which were gone forever. Then she built a program to strengthen those leg muscles that my wife had.
If you could find someone like that to work with your son on either rehab or memory improvement, that might help his life outlook. At his age, his body should be able to recover and improve.
You didn’t mention school, but if your son is going, get with the school or their social worker or ombudsman–anyone that will work through the bureaucracy to help your son. An individual education plan (IEP) is what they call it locally, and it is built through consultation with all the specialties at the school, including you.
Our son was in college when he underwent surgery. His seizures were a concern for his schoolwork. He walked into the disability office, and when he came out, he had access to tutors, someone who would attend all classes with him taking notes, a free pass if he had a seizure while taking a test (to take it later), and more time to test if he needed it. He really didn’t use much of it, but it was there. Oh, and the cost to him: ZERO!
I understand how your son might not see the opportunities ahead and how things right now seem dismal. But I know that people with worse issues succeed. And at age 15, who knows what medical improvements will happen by his age 40? When my wife’s AVM showed up in 1991, she was told to go home and live with it, cuz it was inoperable. Fast forward to 1998, after several embolizations, a couple of radiations, and two surgeries, her AVM is GONE!
I wish all of you well.
Ron, KS
Mary,
I have a daughter who’s had two craniotomies from a ruptured AVM. While my daughter was recovering, we met a fabulous young lady who was 14 when her AVM ruptured. She went through plenty of depression. I can’t blame any of them. AVMs aren’t fair. Brain injuries aren’t fair. Life-altering health issues shouldn’t happen to a 15-year-old. Period.
However, we have to move forward, take things a day at a time when things get bad.
My daughter is seeing a psychiatrist who prescribed something to help take the edge of the emotional outbursts. That has helped. She receives therapy four days a week from PTs, OTs and SLPs. There is a pediatric outpatient facility that caters to children with special health care needs, so that’s where my daughter goes. But there is also a brain injury facility near here and many throughout the country that would help your son realize he isn’t alone. Maybe give him a sense of camaraderie seeing that there are others in the same boat.
Maybe there’s a BI support group nearby that might give him some chance to talk to some people who have been there and understand the range of emotions involved in a brain injury.
I have seen many of these things in my daughter’s life. Teens are a tough group to “reach” anyway, especially one with a brain injury.
My heart goes out to you. Good luck!!
– Tina
Hello Mary and Son .
This is a journey that none of us chooses to take . There is no map to help us traverse this unfamiliar terrain in a foriegn land so we must find our own paths . And we do find them , one breath - one moment - one step - one task - one day at a time .
It is paramount to persue all of the assistance that is offered and can be found from family , friends , physicians , school …any and every where . This is a lot of work on every level every minute of every day . Survival is only the first step , then comes more work to re-acclimate as best one can and incorporate the existing with the new while learning to overcome obstacles that most people can not imagine so that one can relearn to function and move forward . It can make one weary …body , mind and soul . Therapy -physical , intellectual , emotional can be beneficial in helping us find means by which to contend with how we feel about / in a situation . No therapy makes any feeling go away . We can - as I see it - try to find new ways to contend with the challenges . Sometimes we do and as with everyone - sometimes we do not . We must continue to try , yes ?
What I found most interesting about myself was that after the brain explosion and surgeries I was exactly the same person I was for the forty-three years before - and as I am now- almost ten years later - only completely different . It is a conundrum inside of a riddle wrapped in an enigma . Such a paradox can be overwhelming and some days are not as wonderful as others …but they are our days to do with as we choose . The choices we make depend on how we feel in the moment . After such trauma and shock we do not always have the positiveness of mind to remember that .
Much of the information we recieve about the world is taken in through the eyes and processed through the visual pathways - even sound , smell and touch . It is a big hit to literally lose half the world and all that went with it . It takes time to find the means and mind to attend to such matters and it can be done .
There is an excellent book on vision that is an easy , interesting and informative read on the how and why we " see " and it contains exercises and tricks to help utilize what vision we have and perhaps maintain what vision we have .
" TOTAL VISION " by Richard S. Kavner & Lorraine Dusky 1978 ( I believe …) .
There is another book by Daniel J . Siegel , " THE DEVELOPING MIND " 1999 that I found interesting and informative that touches ( in simple terms ) on the how and why of who we are and may become . You and/or your son may find some interest in them .
Have you and your son played catch lately ? Tossed some balloons around ? Tried to walk a straight line with your eyes closed ? How about a memory game ? Or hide and seek ? Sounds crazy but these are vision/brain exercises …seriously they are and a good reason to laugh at yourselves , each other and everyone you can get to exercise with you . I highly reccomend dancing …also exercise for visual processing , balance and coordination and a reason to laugh …No one can afford to lose the laughter Mary , right ?
I am so sorry for the troubles , worries and woes that have been visited apon your son and you and yours AND there is hope for better days and with each day the " better " can be that much closer , it takes hard work , determination , strength , hope , love and all of the assistance that can be found . There are dark days and that is why dancing is so important …I found that knocking a few things or people over made me think about them and not me while I laughed .
Just remember that your son ( and you may have to remind him ) is amongst the bravest of the brave and the strongest of the strong as is his Mother . Mothers and sons are an unbeatable team .
May I ask if he is on any meds now ? Sometimes meds cause adverse reactions even when they are helpful and blood levels should be monitored also sometimes our blood levels change from what we’ve gone through and that should be checked .
Mary I know you’re scared and only progress and faith in both of you can help to get passed the fear and perhaps on to the next task . There is always another task and hopefully another reward in the accomplishment . You are amazing .
Be good to you . Take care of you .
Mary,
I’m so sorry your son is suffering from depression on top of the other physical changes. My first question is what medications is he on? Nea had difficulties from her anti-seizure meds and it took a while and a couple of adjustments to find a solution.
Beyond the meds, how is he sleeping? Nea has had difficulties with getting quality rest at night since her stroke. It has gotten better over the past 21 months. Some things that worked were establishing a night time routine (always difficult with young adults) where she would start shutting down for the night. Another thing was getting a spray bottle of lavender scent and spraying it on her pillow at night. The scent helps remind her body it’s time to sleep. I’m about to check into Tart Cherry concentrate becuase of the high amount of melatonin there.
Also, I think young adults have a particularly hard time coping with all this because it strikes them just as they are starting to experience their independence and seeing their future and then this is taken away and they are even more dependent on their parents than they were… and then their friends continue on the path that they can’t participate in. So I think it’s important to find a therapist who might specialize in teens with loss issues.
Another issue Nea struggles with is that she’s just not the same person… she’s lost the ability to learn and focus that she used to have. She does well enough in school, but it’s not the same and she KNOWS she’s not the same. And that she may never “get back” to where she was. A lot of time people approach survivors with the attitude that they (the survivor) should be grateful that they are as recovered as they are. I know as a parent I’m thrilled at how far Nea has come. But I need to remember that as thrilled as I am, SHE’S still greiving for her old self.
I know there are groups here for teens how have (or had) AVMs. There’s also groups on facebook. It might help him to connect with others, although this is something Nea has not been intersted in.
I’m glad you found this group. There’s so many here who understand your feelings and can offer advice.
Dear Mary,
My AVM was in my left occipital lobe and it actually ruptured in 2008. It sounds as though your son’s AVM was worse than mine, although we have similar results. When it ruptured, I underwent an embolism, followed by cranial surgery. This all was a difficult experience for a mature adult to go through – I cannot imagine how it would affect a teenager – and the deficits left from this traumatic brain injury can be quite life-altering. The AVM rupture and subsequent surgery affected my speech (and of course, I speak publically in my work) and some cognitive processing, my vocal cords were damaged during surgery, I could no longer read easily (another bummer for my job – obviously a hardship for a student – although I hope he has a software program on his computer, such as “Natural Reader,” that “reads” text out load on the computer screen-- it is awesome and I use it at work); I can’t read for pleasure anymore, and I had some weaknesses on my right side that PT eventually resolved. Also, when I thought I was recovering I was struck by and battled horrible fatigue for months. But another primary factor you are encountering here – Let’s face it – your son is 15 – a very trying age for teenage boys (I have two sons and know what I am talking about). Now, to be 15 and be dealing with this AVM stuff is very tough. It is good he is in therapy – he might also need to be treated with anti-depressent medication (or if he is on one for a while and doesn’t seem to help, see if another formula might be more effective). He needs to improve his physical abilities with PT and exercise and also get through high school. I used PT to work on my visual field – this takes a long time but there is research that says the more you use your eyes after such an episode, the more likely it will be that some eyesight will recover. Check out the eyesight therapy at Johns Hopkins in Baltimore. Regardless, continue to let him know how much you love him and support him (as we know, teenagers hear their parents even if they don’t readily respond), find other family members and friends who can connect and support him and hopefully raise his spirits, help him understand that he will get through this and eventually he will be able to make accommodations for what the AVM has done to him, all the while acknowledging the challenges he faces and his grief over the losses he has suffered. Most teenagers can’t see life beyond high school (and this is the source of many teenage suicides) – the message here is this: there is life after high school and life will not always feel like a popularity contest. If you believe he is suffering beyond the normal teenage angst – keep looking for a doctor who will be a better fit for treating your son. It is good to both acknowlege the boy’s pain and that he has been dealt a bad hand, but also it is important to encourage him to work through this, know that you love him and admire his efforts to recover, no matter how long it seems to be taking, and that he will be better next year than he is today, and will be even better two years from now. It will be small and incremental but he will eventually have some improvements. Everyone needs hope. And since he is still growing, it is hard to distinguish if his mood, etc. is affected by his normal physical/mental development or his AVM. My boys both have ADD, and one had significant learning disabilities, and all became substantially worse when they turned 15. I really hope things get better soon and your child can climb out of this sadness and get back to enjoying life. I will keep you both in my thoughts and prayers.
Tim struggles as well with not being the same person . He sais more and more I just want to be who I was, it tears me to pieces. Tim sleep patterns are very bad, he says he can’t go to sleep, he sometimes will go two days without sleeping, the doctor tells us to give him ambien, that doesnt help either. I wrote down your routine that you do with Nea and am going to try it with him… do you get lavander spray just from a store?? I will look further into that, I had no idea scents can makes your senses realise things. He takes no meds at all, he was on Keppr for about 9 months, but they decreased it and finally took him off it. The therapist suggests no anti-depressants, she said that in her experience most increase the feeling of depression and adds suicidal thought in TBI patients. He does not see a regual MD either, I saw that in some responses people say they get regular blood tests// Does Nea, and should I be looking into a new Dr. that is more agressive?? His neuro-surgeon left the states, so I dont even have him to go to.
Getting help in the beginning for Tim was a challange, they didnt recognise Tim’s hemianopsia as a blindness and I challanged the state and fought in Albany and got him recognised, that was the beginning of tremendous help. His OT/PT and mobility through them changed his life!! He has alot of technology that assists him when he’s not fighting against having to use it… again his struggles with accepting his changes.
Im trying to convince him to join this sight with me, he always sais he is alone… and though his 2 freinds in his life are wonderfully loyal, they aren’t him, and since Tim can never drive, 19 and a young man not driving makes for a hardship I can not even describe. He describes himself as a freak… I think if he could get on here and see that he is far from alone maybe it will help. But … I can say the two roommates that he had during his 6 month stay in rehab, they had brain trauma, not from an AVM but had similar struggles, he was so close with but as time goes on he avoids them, always stating he just wants to be normal.
Thank you so much for replying, in the past 3 days I have learned so much, and for the first time in a long time feel hope, just knowing Im not alone, but more so getting him to see he’s not, that he can too reach out and seek advice and help within people who really understand!
Nea’s Mom said:
Mary,
I’m so sorry your son is suffering from depression on top of the other physical changes. My first question is what medications is he on? Nea had difficulties from her anti-seizure meds and it took a while and a couple of adjustments to find a solution.
Beyond the meds, how is he sleeping? Nea has had difficulties with getting quality rest at night since her stroke. It has gotten better over the past 21 months. Some things that worked were establishing a night time routine (always difficult with young adults) where she would start shutting down for the night. Another thing was getting a spray bottle of lavender scent and spraying it on her pillow at night. The scent helps remind her body it’s time to sleep. I’m about to check into Tart Cherry concentrate becuase of the high amount of melatonin there.
Also, I think young adults have a particularly hard time coping with all this because it strikes them just as they are starting to experience their independence and seeing their future and then this is taken away and they are even more dependent on their parents than they were… and then their friends continue on the path that they can’t participate in. So I think it’s important to find a therapist who might specialize in teens with loss issues.
Another issue Nea struggles with is that she’s just not the same person… she’s lost the ability to learn and focus that she used to have. She does well enough in school, but it’s not the same and she KNOWS she’s not the same. And that she may never “get back” to where she was. A lot of time people approach survivors with the attitude that they (the survivor) should be grateful that they are as recovered as they are. I know as a parent I’m thrilled at how far Nea has come. But I need to remember that as thrilled as I am, SHE’S still greiving for her old self.
I know there are groups here for teens how have (or had) AVMs. There’s also groups on facebook. It might help him to connect with others, although this is something Nea has not been intersted in.
I’m glad you found this group. There’s so many here who understand your feelings and can offer advice.
Dear Mary, Your Tim should have a primary care (PC) physician who can work with you to locate the appropriate specialists your son needs and who knows Tim and sees him periodically for checkups, vaccinations, or illnesses. A PC doc who is interested in caring for adolesents and patients with TBI would be ideal. Contacting local AMA office or treatment centers for recommendations is one way to find them. I strongly suggest asking for a meeting to interview potential PC doctors – sit down one-on-one with the doctor (without Tim) and explain what has happened with your child. I think you will instinctively know if the doctor has promise. Ask why he or she believe they could care for your son and what subspecialists they would recommend for someone who has gone through what Tim has (try to get actual names). And if Tim were under their care, what records and other info would you need to provide to them. Once you’ve made your choice of who you believe will be best for Tim, do so with the condition that if Tim doesn’t connect well with this doctor in a couple visits, you will keep searching for one that will. For even if Tim had never had this AVM, it is important for a teenager to have a doctor who knows him, monitors his wellness, and coordinates his care. I would certainly share with the PC doc the views on anti-depression medications expressed by the doctor who is treating Tim. A good PC doctor will help you find a new neurologist (he should see one every year even though the worse is behind him – I do and I always have ongoing questions and I still have pain in my incision area); a neuro-optamologist (I probably spelled that wrong - a doctor who specializes in eye sight that has been affected by neurological issues); and other subspecialties such as dermatologist or PT. The PC doctor should help to treat problems of sleeplessness (I have the same problem); and so forth. I found I had lost my concentration and ability to focus – but I had many years of experience to fall back upon. Teenagers don’t have that reservoir of experience and it is much harder for them to accommodate. The good news is that they are young and will probably get better and compensate faster than oldies. As for driving – I went through a driving rehabilitation program and was certified to drive again (nearly 6 months after my surgery) but I at least had many decades of driving experience. I also was given strong advise to modify my driving habits. Your child’s eyesight damage sounds more profound and so if driving will never be possible, he should be aware that many people can’t drive (epilepsy and other neurological conditions) and teenagers in that situation may have a support group of sorts available. And some kids just don’t want to drive but never discuss it. There are cities in this country where one can live, work, go to school, and have fun where a car is completely unnecessary. Depending on how low his vision is, its conceiveable that he might one day find his visual field has improved or techological advances will come along that will make driving possible – putting that notion out there provides hope for the future. I get from your post that this is not likely, but I know that at first my eyesight was so bad – couldn’t see clearly, poor depth perception,couldn’t read, couldn’t track on a page. In subsequent 2 years my vision has improved considerably, probably because I do a lot of written work on the computer, including editing documents written by others (it is a problem when the right side of a word is invisible!). I continue to believe that the more I challenge my brain to work with my limited visual field, the more it responds to create paths that slowly improve my eyesight.
Best to you and Tim. Hang in there!
I found the lavender spray at a store (chain) called Bath and Body Works. Not sure where you are located but they are online.
I hope this helps Tim a small bit. My heart goes out to you both.
Mary Peterson said:
Tim struggles as well with not being the same person . He sais more and more I just want to be who I was, it tears me to pieces. Tim sleep patterns are very bad, he says he can't go to sleep, he sometimes will go two days without sleeping, the doctor tells us to give him ambien, that doesnt help either. I wrote down your routine that you do with Nea and am going to try it with him.. do you get lavander spray just from a store?? I will look further into that, I had no idea scents can makes your senses realise things. He takes no meds at all, he was on Keppr for about 9 months, but they decreased it and finally took him off it. The therapist suggests no anti-depressants, she said that in her experience most increase the feeling of depression and adds suicidal thought in TBI patients. He does not see a regual MD either, I saw that in some responses people say they get regular blood tests// Does Nea, and should I be looking into a new Dr. that is more agressive?? His neuro-surgeon left the states, so I dont even have him to go to. Getting help in the beginning for Tim was a challange, they didnt recognise Tim's hemianopsia as a blindness and I challanged the state and fought in Albany and got him recognised, that was the beginning of tremendous help. His OT/PT and mobility through them changed his life!! He has alot of technology that assists him when he's not fighting against having to use it... again his struggles with accepting his changes.
Im trying to convince him to join this sight with me, he always sais he is alone.. and though his 2 freinds in his life are wonderfully loyal, they aren't him, and since Tim can never drive, 19 and a young man not driving makes for a hardship I can not even describe. He describes himself as a freak.. I think if he could get on here and see that he is far from alone maybe it will help. But .. I can say the two roommates that he had during his 6 month stay in rehab, they had brain trauma, not from an AVM but had similar struggles, he was so close with but as time goes on he avoids them, always stating he just wants to be normal.
Thank you so much for replying, in the past 3 days I have learned so much, and for the first time in a long time feel hope, just knowing Im not alone, but more so getting him to see he's not, that he can too reach out and seek advice and help within people who really understand!
Nea's Mom said:Mary,
I'm so sorry your son is suffering from depression on top of the other physical changes. My first question is what medications is he on? Nea had difficulties from her anti-seizure meds and it took a while and a couple of adjustments to find a solution.
Beyond the meds, how is he sleeping? Nea has had difficulties with getting quality rest at night since her stroke. It has gotten better over the past 21 months. Some things that worked were establishing a night time routine (always difficult with young adults) where she would start shutting down for the night. Another thing was getting a spray bottle of lavender scent and spraying it on her pillow at night. The scent helps remind her body it's time to sleep. I'm about to check into Tart Cherry concentrate becuase of the high amount of melatonin there.
Also, I think young adults have a particularly hard time coping with all this because it strikes them just as they are starting to experience their independence and seeing their future and then this is taken away and they are even more dependent on their parents than they were... and then their friends continue on the path that they can't participate in. So I think it's important to find a therapist who might specialize in teens with loss issues.
Another issue Nea struggles with is that she's just not the same person... she's lost the ability to learn and focus that she used to have. She does well enough in school, but it's not the same and she KNOWS she's not the same. And that she may never "get back" to where she was. A lot of time people approach survivors with the attitude that they (the survivor) should be grateful that they are as recovered as they are. I know as a parent I'm thrilled at how far Nea has come. But I need to remember that as thrilled as I am, SHE'S still greiving for her old self.
I know there are groups here for teens how have (or had) AVMs. There's also groups on facebook. It might help him to connect with others, although this is something Nea has not been intersted in.
I'm glad you found this group. There's so many here who understand your feelings and can offer advice.
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 Phani,
They told me Tim would loose just his right peripheral vision too, but lost his entire right visual field. Which means he lost the right vision in both eyes, giving him only 1/2 his vision.. to explain the best I can, hands on the wheel at 10 and 2 he can see the center and left side of the car, center and right is missing, a blank, this means he can never drive and reading is near impossible, for a student is like living in hell as he says. If she looses just her peripheral vision it means just what is on the side, put your hand to your ear and bring it forward, she wont see it until its an elbow length out.. you can function normal, drive and it doesnt seem to affect balance like Tims has.. I hope she continues to do well. The headaches are awful TIm suffered with them too. Keep me posted, any question I can answer I will. I wish you both the best and will add you to my prayers!!
Mary
Depression is a common side effect, so is grieving for the way we/things/our life were prior to the AVM. From my own experience, sometimes one just gets so flustrated with the 'deficits' and 'new life' that we feel it is useless in trying to get our 'normal' life back (AKA: 'spinning our wheels and getting nowhere') - we choose not to 'just accept' but yet, we feel defeated. For me, I was essentially still me (mentally) and yet, physically I wasn't. I was trying to recover and still hold on to "me" (= I didn't want my AVM 'ordeal' to change me nor my life but it does and I had absolutely no 'control' nor 'say so' over that) and that was and still is a huge emotional struggle/battle.
There is also something called "pseudobulbar affect (PBA)" (AKA: "Emotional Incontingency/Incontinence") where a person can not control their emotions (for example: uncontrollable crying or inappropriate laughing or crying) that is also a normal 'side effect' from brain injuries/brain surgeries/etc. From what I've read, there is no 'cure' for PBA but antidepressants were found to help in some cases. Here's a (current) link about PBA: http://www.npr.org/templates/story/story.php?storyId=130982805 (info. & a new drug being introduced) that may help you gain some insight on the emotional aspect for him.
Because everyone's AVM situation is different, ALWAYS check with his doctor and do 'research'. Hope he finds some relief, as this is an aweful 'emotional rollercoaster' that seems to be never-ending most times.
Hi Cindy, Im sorry for what you too are experiencing.. but you hit the nail on the head, Tim sais to me all the time, you made the choice to do this, you never asked me what I thought! OK, Alls I can say is as a parent you make the choice to save and perserve the life your child has, there wasn't an alternative, for Tim at that moment the alternative was far worse. I have gotten him a new doctor and we in the last few weeks of being on this sight have learned and gotten more answers that our regular Dr. ever gave us, we no longer have that Dr. and we changed therapists too. I always relied on my research, it's what got me fightring for him and the things we did get in place becasue NO one guides you, your just left your own. I dont understand why ( the neurologist, rehabilitaiton center, and the phsycologists) forgot to tell us this part of the surgery, the aftermath, the coping with the rollercoaster of life, the changes for Tim were far far more than loss of vision.. For the first time we are talking about antidepressants, and Tim is receptive, and I told him about this sight and all the wonderful people> I've read so many of the responses to him and he's listening, cause he's talking again. He's so not alone and not a freak.. this sight has been a blessing and all your input a gift!! I wish you the best, keep us updated. I hope he can too freely come on and join here, I think talking with people like him rather than people who really have no clue would benefit him and he would see there is soo much support and wisdom out here to help him. Thanks so much for responding and for sharing!!
Thank you, Mary. I am so happy that you were able to switch doctors and therapist and things are looking brighter/better for him!
I completely understand Tim's self protrayal of 'freak' (as I too made the same comment about myself) and his 'living like this' concept & comment. (At one point, I was angry that the decision to save my life - no matter what 'deficits' or 'challenges' I may have to face and try to overcome- seemed to be a selfish act on behalf of my family members. At times, the emotional struggle (to accept me & my life a little different now versus the me & my life prior to my AVM) was too much/overwhelming and I wanted to give up. Despite his comments, Tim REALLY and truly does NOT want to die. As time passes, that viewpoint should change after Tim 'grieves', which can last a short time or a long time. Here is what you have to hold in your heart and mind (for YOU): you (rightfully & lovingly) 'fought' for Tim's life when he couldn't and you are continuing to 'fight' for him now (during his recovery), so he can 'fight' for himself. It's not an 'easy' battle but he can do it... and as I see it, we really don't have a choice in NOT recovering the best we possibly can since we are still alive!) Even though we KNOW we aren't freaks, we are not exactly the same as we were; therefore, we do feel 'odd' (AKA: freakish) now. It took me awhile to join this site because I didn't really want to discuss my 'AVM ordeal' (perhaps it was a 'self-perservation tactic', sort of like 'don't ask, don't tell"). (Subconsciously, I was 'running' - unaware of the real/underlying reason behind my 'hesitation' - but the truth actually boiled down to me subconsciously thinking if I talked about my 'ordeal' then that meant I was accepting it and would succumb to the 'new limitations' - and that would somehow make it 'real' or 'more real' (and surrendering myself was NOT something I would 'allow'.)
This site would benefit him (in many ways); however, he will have to be the one who 'wants it' (sort of like 'leading a horse to water but you can't make him drink'). Keep doing what you are doing (researching and reading the messages to him - it DOES and WILL help)! He WILL come (in his own time). In the meantime, know that what you are doing for him (researching, seeking information, giving & getting quality care for him, etc.) IS GREATLY appreciated (& needed) by him (whether he tells you that now or not)! Keep your head 'high' and continue to love him with all your heart and soul... let the 'sad comments' he makes during this time 'roll off your back' as you keep perservering forward - fighting for & promoting his health & well-being.
I absolutely agree that the professionals (doctors, nurses, medical staff, etc.) should provide us (patients/family members/etc.) with more info. than they do, as we do feel so overwhelmed and lost in all this. Hang in there and take this one step at a time... you... Tim... we all will get through this in time! My thoughts are with you and Tim and I am happy to talk to you and/or Tim anytime, so please do not hesitate to inquire. Take care and both of you: 'just breath' and take it 'one step at a time'!
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.
mary,
i am really sorry to hear about your son. I hope he gains strength to accept this. my wife is slowly recovering and its been 10 days after the surgery. her right field vision is cut and she is not abel to read clearly. she used to be a software engineer, now I wonder what she will be. it is very very tough for her to accept this. we were told about right field peripheral vision loss, now they say its the right field loss. But I ask my self, if they had told us that she will be blind, wouldnt we have gone ahead with teh surgery? we would have gone for it as it was a very large, life threatening AVM.
1.when did your son's surgery take place?
2. when you say short term and long term memory lapses, could you elaborate more?
3. the doctors say taht due to the swelling in brain (due to surgery), the memory, speech and vision functions will be disturbed as teh swelling seems to affect the parts of brain that handles these functions. I think he might also be having tough time with basic math. for example calculating 12*11 without a pen.
4. what kind of therapy is he going through?
Mary Peterson said:
Hi Phani,
They told me Tim would loose just his right peripheral vision too, but lost his entire right visual field. Which means he lost the right vision in both eyes, giving him only 1/2 his vision.. to explain the best I can, hands on the wheel at 10 and 2 he can see the center and left side of the car, center and right is missing, a blank, this means he can never drive and reading is near impossible, for a student is like living in hell as he says. If she looses just her peripheral vision it means just what is on the side, put your hand to your ear and bring it forward, she wont see it until its an elbow length out.. you can function normal, drive and it doesnt seem to affect balance like Tims has.. I hope she continues to do well. The headaches are awful TIm suffered with them too. Keep me posted, any question I can answer I will. I wish you both the best and will add you to my prayers!!
Mary
phillip s sharp said:hello avm.its a long recovery and a hard road.after20years i still have trouble thinking. sometimes a have just a blank thought.and i am i different person! from what i hear i was a very mean person.i cant think of me that way now.i just cant remember it no matter how hard i try.i have forgotten most off my past.
Mary Peterson said:
Hi Phani,
They told me Tim would loose just his right peripheral vision too, but lost his entire right visual field. Which means he lost the right vision in both eyes, giving him only 1/2 his vision.. to explain the best I can, hands on the wheel at 10 and 2 he can see the center and left side of the car, center and right is missing, a blank, this means he can never drive and reading is near impossible, for a student is like living in hell as he says. If she looses just her peripheral vision it means just what is on the side, put your hand to your ear and bring it forward, she wont see it until its an elbow length out.. you can function normal, drive and it doesnt seem to affect balance like Tims has.. I hope she continues to do well. The headaches are awful TIm suffered with them too. Keep me posted, any question I can answer I will. I wish you both the best and will add you to my prayers!!
Mary
Hi Phani,
Tim had his surgery January 16th 2007. After the initital swelling went down, and 9 months in house therapy Tim recovered his speech, but it wasn't easy. Reading was and still is his biggest challange. Tim scans books, etc and his computor reads to him, reading takes him for 1 page in a book about 55 minutes. He used to read 500 page books in 3 hours.. he hates reading now. As for long term, he has wholes in his child hood, when you show him pictures he has no clue who the people are, even siblings. To this day you can bring up a memory from 7-14 theres not much there.. all his accomplishments, musically, academically and just family fun is gone.. he sais sometimes he has these odd dreams, and if he can remember them they appear to be blips of his past in dream form. They say he will not get that back if he hasn't by now, I always hold onto hope.. that maybe he will, I think it would help fill the void. Tim used to play the piano, by ear he taught himself when he was 5 and had played for ten years, so beautifully, was in the Jazz band and was teaching piano to 1st and 2nd year children, NOT any memory... he sits in front of the keys for hours and tries and it just doesnt come to him. As for short term, he can be in a lecture for college, and when he gets home he can not remember what was discussed, he has equipment he takes with him to record the class to go back to and that helps him immensely. He can tell you something and than 10 minutes later come and tell you and have no idea he did, we stopped telling him he just told us, his frustration was becoming toture to him, we just relisten.. its sometimes nice to see him be excited that much! There are days when his short term loss doesnt happen at all, they can not pin point what makes it come and go.. so we go with the day.
As for therapy he does follow up mobility, speech and memory.. though it was 3 times weekly he does it 2 days a month as refresher classes, we tried not to do them, but he seemed to regress to much, he does much therapy weekly on his own to keep up too. he had visual therapy, and I got him involved with a Doctor in Atlanta Georgia who works specifially with field loss, he changed TIms life with intense training and prisims glasses which work with the brian and expand his visual field (illusion) when the glasses come off hes blind again. So far this has been the most imparitive part of Tims recovery, it changed his abilities in class and in life. Now he goes to physco therapy, and we are in the middle of changing all of this cause after being on here I do not think his therapist was helping at all...
I wish the best for your wife and you. She's just beginning her journey, fight for all and any services that will help her move forward, and never take the answer "theres nothing more we can do", becasue there is sooo much out there to help. Coming on here is the greatest step of them all. I wish I had when it all began!! I dont know where you live but I got Tim connected with the Commision of the Blind, they didnt acknowledge "field" loss as a blindness, because if you have any sight your not blind. I fought with all I had and changed that rule, Tim's best services and support have been through them. I don;t know what I would have done without their help and guidance. WIth a full field loss you are legally blind, and that is a life changing challange all on its own. My thoughts and prayers to you both!!
Keep in touch
Mary
phanivas vemuri said:
mary,
i am really sorry to hear about your son. I hope he gains strength to accept this. my wife is slowly recovering and its been 10 days after the surgery. her right field vision is cut and she is not abel to read clearly. she used to be a software engineer, now I wonder what she will be. it is very very tough for her to accept this. we were told about right field peripheral vision loss, now they say its the right field loss. But I ask my self, if they had told us that she will be blind, wouldnt we have gone ahead with teh surgery? we would have gone for it as it was a very large, life threatening AVM.
1.when did your son's surgery take place?
2. when you say short term and long term memory lapses, could you elaborate more?
3. the doctors say taht due to the swelling in brain (due to surgery), the memory, speech and vision functions will be disturbed as teh swelling seems to affect the parts of brain that handles these functions. I think he might also be having tough time with basic math. for example calculating 12*11 without a pen.
4. what kind of therapy is he going through?