hello this is my first time bloging here. i am a 26 year old male with 2 young children 5 and 7 years old, and a newly 26 year old, wife Angelica who is currently in the hospital trying to control her new found seizures with meds for the past 10 days or so. they are not constant seizures although she just keeps crying in pain saying she don’t like her brain anymore and that she wants to take it out. yeah i know right take it out? its like she is giving up and me i dunno if i have anything left. i am drained in every sense of the word. afte seeing her going nuts off the steroids they gave her last week to take care of the swelling after the embolization made me really question my whole beleif system. she is somewhat back mentally for the most part but mostly she is going through a tough time adjusting to her life now. if i could some up her state of being into one word it would be pain. i cannot even make myself go to work at night, i just keep using my f.m.l.a. leave even though i know i may be out of vacation pay substitute pay. and i am soo stressed out with her condition and my bills and life being on hold at home, i feel so helpless. our children are being watched by my parents, her parents are still in mexico and i must have an interpreter or her call them whenever i can long distance. each time i worry it will be the second to the last. the doc said he wiped out the a.v.m. in one ambolization, but he doesn’t know how long the seizures will follow, maybe for life. i seen a seizure once when i was little with my aunt who was born epoleptic. it scared me then and i hate to say as an adult it scares me now. God will this ever end and she ever be like she was before?
Todd, I’m sorry to hear about all the seizures. You are in the right place. Within a day or two you’ll have some responses from people who have personal experiences with seizures and can help guide you. You did the right thing in reaching out. We’re not doctors, but we’ve all been there with an AVM. Many of us have been there with seizures. Every case is different, but it does get better. Be there for your wife and we’ll be there for you.
Todd there is so much uncertainty in all of this that the only way to begin to cope is with one issue at a time , one moment at a time . I do realize that you are scared , confused and exhausted from these events . So is your wife and I admire your ability to still be holding on .
It is excellent tto read that the avm was “wiped out” by one procedure . It is horrible that she must contend with the pain . Perhaps a conversation between her , you and the hospital staff will prompt them to find a better means by which to aleviate the pain for her . Pain inhibits healing and must be controlled .
Ten days is such a short span of time , even if it feels like a million years , and she is working so hard in there to heal while you are working so hard out here to hang on . There is really no other means to contend with this situation other than one issue at a time in one moment at a time .
Seizures are not uncommon after such treatment/trauma and can be controlled effectively with meds but the temporary or permanent nature of them tales time to know .
There does come a time when manageability is more the order of the day than chaos , when pain lessens and fear is tempered by actions of being able to again live each moment . As you are both aware none of us knows the order of the days , not really . We plan , we “do” , we dream and usually we make it so . Every so often our worlds are knocked off their axis and out of our universe . That is when we must decide to begin a-mew . Before is before Todd . What you all have is now -this moment in this time . It is the incorporation of our experiences in the moments of our living of our lives that make us who we are from moment to moment . You are both different now , you will be diffeent tomorrow , next year and so on in this continuation of living your life . That would have been so no matter the circumstance . Your situation magnifies this process and brings uncertainty close to hand and that is enough to drive most of us a bit crazy . It is also enough to drive most of us to find strength , love , the will to live , learn , triumph , laugh , hug , kick , scream , cry , find solutions and hold on that we did not believe we had left in us .
Your bravery , strength , determination and love for her and your family are obvious Todd ; All those qualities show through your fears . Believe in you , believe in her . Nothing is impossible and the possibilities are endlessly there for all of you .
I am truly sorry for the troubles , worries and woes that you must suffer now . It;s a lot to simply breath…This is not a journey any one takes by choice-this is not a club we opt to join . It is as it is . That means that it WILL all change moment to moment the healing will come for all .
By the way , I can understand your wife’s not liking her brain anymore and wanting to take it out . That is how I felt about mine for a while . Please let her know that she is understood .
Todd you and yours are in my prayers and those of many more . You must be good to you and take care of you-for yourself as well as for your wife and children . You are important in the world . Get all of the assistance you can . Take all that is offered and do not be afraid to ask for more when necessary . No one kows what we need unless we tell them . Remind your wife of that…we can be a bit fuzzy for a time after these traumas but , remind her to tell evryone what she needs and remind every0one tp listen .
Positive thoughts, loving prayers and hugs for you and yours .
A lot of improvement happens after a treatment like this, and often it takes a while. The brain needs time to settle down and figure out that you haven’t hurt it.
You will want to be sure that an epileptologist is treating your wife now. This type of doctor knows a lot more about seizures than any other neurologist or neurosurgeon does, and can make sure she gets on the right medicine.
If you’re interested in a second opinion from another doctor, maybe to see if there’s a different way to address the pain, it is possible to have the hospital send a copy of your wife’s medical records to a neurosurgeon at another hospital that handles a lot of AVMs. (We use Chicago Institute of Neurosurgery and Neuroresearch, and Rush.) We never asked for a second opinion with the AVM, but a new doctor made a world of difference with my husband’s epilepsy.
About medical bills, here’s a link to info about your hospital’s discount program: http://www.advocatehealth.com/body.cfm?id=2138
I know you’ve been working at capacity and you’re completely overwhelmed, so I don’t mean to say that you should be doing more…being there for your wife is the best thing you can do. These are only a few suggestions in case you feel like you want more options.
We are thinking of you.
You have a lot on your plate right now, two young kids, and Jessica is going through hell right now, it probably seems like too much to bear. And it is, but I hope that with support, you’ll find the strength and support.
I had my brain aneurysm/AVM at age 34, and for me, the first six months was just a level of difficultly and devastation that I didn’t think was possible. Mind you my mom died when i was 25, my dad died when i was 32, so I had hit very rough patches before. But, I woke up and could barely move my left arm, and could not wiggle my toes, things were so bleak. It’s surreal to me now, I don’t honestly know how i dealt with it. I was a crying mess for two weeks straight, and then miserable but working hard with moments of fun and ‘meltdown’ moments for the next yr. No seizures back then, so i’m sure it’s even harder. Then things just started getting marketedly better (kind of night and day versus before) with each passing month. Finished my MBA, life got back to semi-normal. I got a seizure after taking an anti-mgraine pill (maxalt), so it increased my seizure risk, and am now on keppra which works well and has few side effects. I do have to do everything ‘super healthy’ which does kind of suck. I have to get 8 hours of good sleep, eat lots of protein, no junk food/etc), but it works but took me many months to figure it out. I just eventually figured out with trial and error that my brain needs me to treat it really well, and most days are pretty good now. I do think some days life just sucks and there’s no point denying it. But keep hope and just take it a day at a time and it will hopefully get better with time and effort.
With the brain, I find doctors just have no idea about so much, every answer is vague and they don’t know how to get the best treatment it’s a trial and error process. Very frustrating, but new therapies, treatments and knowledge are coming every month now. So hope is everywhere. You never know how far you’ll go unless you keep hope and keep working hard. but there is so much HOPE for all of us. The brain really is amazing in its ability to recover from injury and doctors only in the last decade have really realized it. For hope, check out Jason Crigley (sp?) story on PBS http://www.pbs.org/pov/lifesupportmusic/
and you can watch it online (if you have cable/DSL connection) at http://www.pbs.org/pov/lifesupportmusic/watch_the_film.php
I happened to catch this on PBS by accident) and even though my progress is considered ‘remarkable’, his really floored me. His progress at the end is just miraculous to me and I was so happy for him!!
If you’re having a crisis of faith, who wouldn’t? I know I did. I’ve only recently joined this support site, and have really gained strength and optimism from other’s journeys and their postings. It’s a very positive group and people show remarkable resilience which carries them forward. The AVM journey is unique for everyone, but please do not lose hope and you and Angela will both move forward. I’ve had a two steps forward, one step backwards cadence throughout my recovery journey, but now that i look back, i see how far i’ve still come.
best to you!
hang in there and stay positive the siezures can be controlled with medication…it may just take a little time to find a medication that works for your wife after my surgery i was having very servre siezires…they continued for a month or so while doctors found the right dose of the right medication for me and i am happy to say…i havent had a siezure since january…i ask that God gives you the extra strength you need right now to continue this journey…
My heart goes out to both your wife and to YOU. I am the parent of an AVM survivor who had months of surgeries and cyber-knife treatments for her very large AVM, and still had a hemorrhage that completely disabled her. Those first few weeks seemed like a complete nightmare, and there were times that my grief was so unbearable I didn’t know if I wanted to go on. And I wasn’t the one suffering the pain and the disability. At first my husband stayed with me at the hospital, but after 2 weeks he had to get back to working, or we would not be able to pay our mortgage or medical expenses. It was very hard for him to do it, but he had to do it. The weeks in the hospital and then the 6 months she was in the rehab hospital were also very hard, especially since she couldn’t talk, write or even coordinate her hands well enough to point to letters on a spelling card. So we used the sign language alphabet to communicate, which meant that I had to be with her ALL the time. But my husband learned to read the sign alphabet well enough that he could write down each letter as she signed it and then figure out what she was trying to say. I spent all day M-F with Lizzie, and every-other night, and Don spent the other nights with her, though we both were with her every evening so that we could have family time. I know that I was lucky to have my husband to lean on during that awful time. It must be very hard for you to be handling this by yourself. Thankfully I had two good friends who did also learned the sign alphabet so that they could stay with her for an hour or two at a time to give me a break. Those breaks from her were never what I would call blissful…I went home and slept a few hours, or did some laundry; or sometimes just went to the cafeteria and had lunch, or took a walk in the neighborhood surrounding the hospital. But the time away was at least some emotional and mental relief.
I know the doctors and nurses will tell you that you need to take time for yourself, and that will feel impossible to you, and I know exactly how that feels. I never could take the time to get a massage or go to a movie or any of those other things that people think will help. They mean well, but they don’t understand how agonizing it can be every minute you are away from your loved one who is suffering. I used to feel like yelling at them and asking them just WHEN was I supposed to do that? But with friends taking time with Lizzie, even if it was just for an hour, I could get little tiny breaks.
But if you are a member of a religious congregation of some sort, you should be able to call on that community for support. Usually, all it takes is a call to your pastor/rabbi/etc and they can organize the “troops.” I suspect that, as a man who works outside of the home, that you are probably less connected with the network of friends (most likely the mothers of your children’s friends and classmates) that your wife has become a part of. But I would be very surprised if one of them wouldn’t be willing to organize a support group of people who would bring you meals at the hospital, visit you and your wife in the hospital, or, most importantly, stay with your wife to give you a break. That break might just involve you going to your parents’ house to spend time with your kids…just being with them can often give you a big lift. But PLEASE let those people who are willing help you. If it’s hard for you to ask, just find one person to ask and ask them to ask everyone else. For my husband and me it was a very humbling experience. Very hard for me to ask for help…I’ve always been much more comfortable GIVING help than receiving it. But I had to get over my discomfort and simply welcome and appreciate the help. Trust me, you can actually help other people to feel good by letting them help you. And perhaps your parents could swap some time with you, staying with your wife for a few hours while you have time with the kids. So many possibilities
My pastor wisely told me that it was “OK to get mad at God…he can take it.” It’s hard, it’s not fair, and it sucks. But the fact that my entire church was there for us definitely helped me to keep up my faith during the really sucky times. And even my daughter took comfort in her faith, simply asking God to give her the strength to get through it. Not asking for a cure, or a miracle…just strength. When she would get into the “why me” mode, or the “what did I do to deserve this?” mode, she would think about it and say “why NOT me? Should it really be someone else?” and think about how no one “deserves” to be ill or injured…sh*t happens!
Hang in there, and know that even if you sometimes give up on God, God never gives up on you. You WILL make it through this because, really, there is no other choice. I will keep you, your wife, and your children in my thoughts and prayers.
I’m sorry to hear about your wife. Hope she is better real soon. All of thes stories are scaring me soooo much. I haven’t heard any good success from treatment with even Gamma Knife which would be my only option. Just keep hearing about strokes, seizures and bleeds which makes me not want to even go for treatment. I haven’t had any of these nor do I want to start. I know a bleed could cause it but by seeking treatment, I could be making all of this start when maybe it will never happen. I am 44 and heard that after 50 it is not likely to bleed or cause problems. Not sure what is true as there are so many different opinions with AVM’s it seems. I am praying God will help me know what to do. This is like a nightmare, wish I would wake up
Todd, so sorry you are going through this. You are so new in this process, give it all time. I know you’ve heard this before, but it’s worth repeating. The brain is an amazing thing. Unbelievable the gains I have made since my bleed! I continue to make little progresses all the time. But that’s the key, time. It takes time to heal these wounds. I feel such sympathy for you, I see my husband in you. He was with me every moment, even when he should have been working. We also have 2 young girls who were scared out of their minds! How he and you are able to cope is amazing to me. Keep going, your girls need you to. Ask for help, you’ll find it. So many people are willing to help, you just have to make yourself ask for it. Good luck to you and Angelica. Tell her she has a huge group of people who are wishing her the best and praying for a great recovery.
Hi, this is my first time on this site as well. I am an avm survivor. I had a 10 + cm on my right parietol region. I know that the first year is the roughest. Once she gets out of the hospital, she will be tired all the time and this is normal. In the mean time, they are probably trying to find a medicine that works with her body. For me it is Tegratol (generic is very cheap to buy) and it not only helps with seizures but also headaches. Hang in there and just give her lots of love. I will be praying for you and your family. Sherry Hall