I’m almost ready to start freaking out. I found out my son had an avm 2 years ago at age 10, at the time he had a rupture. He has had 2 gamma knife treatments. When we went in for his 6 month post gamma knife follow up MRI an aneurism was discovers. He had an embolization to the area of the avm that was weakened due to the gamma knife. We have his next 6 month follow up in 4 weeks, his avm is 4cm by 3cm and sits at the base of the brain up agains the brain stem. I am a nervous reck, why do parents of patients and surgeons have to always have this love hate relationship? I love them but hate to go, it seems like we never have good news followed by good news.
Lisa, I am sorry that your son has not had a quick or easy journey with his avm. And he is still so young. It may be helpful to get a second opinion from a top pediatric neurosurgeon. Have you joined our Parents' group? If not, click on "Groups" to find it. It is a great place to get support from other parents who have been in your shoes.
Hi Lisa, I'm sorry to hear that your son has had a difficult time, but please don't freak out. You should get another opinion; our pediatric neurosurgeons at Children's Hospital in Detroit, MI are excellent. Stay strong, we've been there.
Lisa, I am so sorry about all your son has gone through.... Great idea to join the Parents Group.
Also, perhaps post a Discussion to get more advise on other great pediatric neurosurgeons available for him!
Best Regards,
Louisa
I had some words of wisdom spoken to me when Iwas first diagnosed, words of encouragment as Iwas a neverous wreak. I am a single Mom and at the time my son was a minor child, my fears and concerns and my AVM had taken over my life. The words still bring a smile to my face. "To live in the past is to live with saddness. To live in the future is to live with fear. To live in the moment is to live with Happiness." I hope these words help you as they did me.
Hi Lisa, hang in there and get rest when you can. We try really hard to keep our attitude and mindset in the most positive way to keep from getting our daughter down. We just fake it if we have to or walk away and take a break. If we feel something is wrong we do speak up too. We learned that being our daughter's advocate is very important.
Honesty and level headed is the only way to go. Having been diagnosed 30 years ago I spent a lot of time in Boston Children's Hospital with actual "sick" kids. Somehow Mom and Dad allowed me to have input into my own treatment and also NEVER missed an opportunity to remind me people have it an awful lot worse than I. If my daughter ever shows signs of an AVM I would follow their blueprint to the letter.
Good luck, I wish you and your son well.
Lisa, all I can tell you is that the freaking out and emotional turmoil never ever ends. My daughter was diagnosed as a teenager and is now 37. She had her first bleed out of the blue in 2010. We have been on pins and needles since she was diagnosed but now worse with the bleed. Her AVM is not operable--too large and in delicate areas. She hasn't had a bleed since 2010 but we feel like we never know when we are going to get that phone call. You try to set it aside, which is easier for us because she doesn't live with us, but I can't imagine what it would be like if she were a 12 year old and living at home. Just take it one day at a time and deal with what comes along as it comes along. I'm sorry you have to go through this and sorry for myself too, but what is the alternative? I hope the Gamma Knife treatments are shrinking the AVM and he will not have deficits he can't overcome. In the meantime, if you can manage, or can afford it, some therapy might be in order to cope. Not easy.
Lisa,
My heart goes out to you as my prayers do. I am not a parent of an AVM survivor but I am one myself, I am a parent though and I can’t even imagine how that feels. My AVM was in my cervical spine close to my brain stem but not nearly as close as your daughters. My own mother (even though I was grown when I was diagnosed) blamed herself thinking it was something she had passed on to me or because she was older when she had me. I hope you never feel that way!! I think that honesty and just making your child feel as safe and secure as you can is the best way to go. I doubt that the anxiety and nervousness will ever go away but I have found that support from others and finding at least one thing that you enjoy doing and doing it on a regular basis helps. I wish you the very best of luck with your daughter’s follow up appointment.
Take a deep breath…you’re a mama- of course you’re stressed, exhausted, and feel ready to lose it:) Our children are our world…and when they go through this, and we can’t fix it ourselves…it’s too much. My daughter and I realized through her craniotomy and tests and and all her angiograms and follow up appointments- we were growing closer. I did a lot of research, asked a lot of questions, and was my daughter’a strongest advocate- stressed moms do good when we have a task…so making sure we were looking into every option, asking all the questions…was a good task to keep me busy. Prayer was super important to me too. Taking time to meditate, pray, or just sit in the coffee shop to rest my mind helped. But most importantly, breathe. Worry does nothing but take from the hours we have on this earth…hang in there!! Sending prayers and hugs your way!
Hi Lisa......i feel for your struggle........more so you reminded me of what must have been the struggles MY PARENTS must have been through during my Brain surgery episode as i was just a school kid 15 yr old 10th grade kid and to complicate it further I am one of the twin brothers + post the surgery bearing all my tortures for 13 yrs even till today.
Let me get to your topic - the tone of your message itself is a proof that you are indeed feeling helpless that you have no choice but to depend on doctors' instructions though some voice in your head may get angry with what the doctors say plus also the feeling of why the doctors are giving the bad news one after the other. LET ME BE HONEST with you it is very difficult to find a doctor who can make you feel "like everything is ok".....most of the times they do make u feel "the sense of fear & speculation"......adding to this, common man like us have no choice but to look upon doctors as GOD and whatever they say is the genuine final words. IN MY CASE, my parents went through this same struggle, not a single good news, I went through the surgery, then landed up with wrong medication, which resulted in Liver damage, then followed by whole body getting charred to black colour, then followed by Fits attack, then followed by me slipping into COMA, then followed by me opening my eyes after coma only to discover I couldn't instantly recollect my own parents, n other words the fits attack & coma had made lose 99% memory damage. WHY I TOLD U this is, a during this entire episode my parents were ABSOLUTELY PERPLEXED & CONFUSED why inspite of the best doctors have no explanation to the caretakers of the AVM survivors who are waiting in the hospital corridors for atleast one good news from the Doctor. Not only that, the doctors had no explanation for who has to be blamed if the wrong medication or the complications in the treatment which kept on dragging and dragging. Why i said this is the doctors themselves take a while observing how the AVM patient is progressing on a hourly basis and take decisions and form strategies on how to handle the complex situation. In other words they really dont have any words to explain to the caretakers who are awaiting at the corridor. HERE MY DOUBT TILL DATE is should the doctors fraternity be blamed for this or Should we gain the acceptance that AVM ailment itself has the characteristics of all these uncertain unexplainable struggles. The answer is its a COMBINATION of BOTH.
Though I know its getting philosophical and lengthy reply, I only have one SUMMARY to tell you. Inpsite of all the uncertainiites, unanswered questions, wrong treatment, trial & error methodologies, MY PARENTS just surrendered to the storm & the storm has carried them through this episode and is still carrying them for 13 yrs after the surgery with daily struggles. So please keep on telling yourself that YOU WILL SURVIVE THIS STORM...................dont feel shy to CRY....... do spend a lot of time sitting in front of god meditating and crying..........it helps to let out all the devils in your head from voicing their speculative fears and negative energy.
ONE LAST MIRACLE - My parents got to know the news I opened my EYES FROM COMA after the doctors told they have given up hope but my parents were actually sitting in the Front of the Gods idol and crying. That when the good news came that I opened my eyes from Coma, Even doctors till date dont know how the miracle happened.
Reminding you a quote - "Dont believe in Miracles, Depend on them". PLEASE STAY STRONG. GOD BLESS.
Cheers,
Santhosh
Bangalore, India.
When I expressed my concern (more like freaking out) about my 6 year old daughter's inoperable avm to a friend of mine. He reminded me that I am not in control, I need to pass on the weight to a Higher power. I don't know if you are religious or believe in anything Devine but, as a parent you can do so much, I went to the Best Doctor's in the U.S. and paid top price for evaluation and re evaluation. There comes a point where there is so much you can do. For me passing it over to a Higher power made it easier, it will never be easy. Which human can make any sense of this? do you deserve this for your child? What did your child do to deserve this? Having blind optimism isn't what it's about but, it is about not living in the future and really absorbing the present. I find that living in the 'what if' is worst. Somehow you have to muster the strength to continue living in the moment and making the best of every moment. I wish your daughter the best of health
Lisa
Back in 1974 when I was 14 I had my first bleed. 4 years prior when I was 10 is when we think I had my first bleed. The location of mine was behind my right ear so, went it bled it went down my spine. I went through a number of spinal taps which showed all blood. They never operated my doctor said it would do more damage, and if was his son he would leave it alone. After having 2 AVM’s still know surgeries mother nature cured me in 37 years. I don’t have any answers for your son but, maybe don’t do anthing and see what happens. My prayers are with your family. Hope this helps.
I know it is heartbreaking to watch them go thru this. My husband and I literally were just put on Anxiety meds because it is so overwhelming. I wish I had better advice for you. Stay strong and you are in our prayers.
You have to accept the situation, pray, and hope for the best. my Daughter has an AVM the size of her Cerebellum which ruptured and blew into her Brain Stem in Nov 2010. 2 weeks in intensive care at BCH and 5 months and 3 days of rehab at Franciscan Hospital for Children, where she had to relearn eating, drinking, talking, and walking. She walked out under her own power.She has undergone proton radiation on the AVM in Jan 2012. She continues to improve with every MRI. The danger for her bleeding again increases with every year. It is hard to live with the fear but you can't let it control your life. I am thankful for every day She wakes up,allI can do is be positive. I hope this helps you in your daily tribulations. God Bless
Thank you everyone for you kind words and support. We have an amazing surgeon, in Seattle. I love the man and really feel like my sons safety and well being comes before him wanting the surgery on his resume. I am very pleased with him, and have never felt like he was just the next patient, I have always felt like my son was important to him. There has just never been an appointment where we have left with no bad news, and as a parent it’s not easy, and the little things have turned into mri’s and cat scans. I know that God has to have a purpose in all this, or my little boy would not be climbing trees, and on the average day acting like another 12 year old boy, full of energy, and living life on the wild side. The bad news and the possibilities though are scary!
Lisa, being a mother is not easy especially in this situation. All I could say is pray and pray hard for guidance. Wish you luck and God Bless you and your son always.