She just got diagnosed with this. Poor thing is trying to endure the tests
and more tests. Appt next week with neurosurg as to the treatment course.
How does one get your daughter ready for this? It is way too much for a kid to
handle, much less an adult. We would obviously want a non-craniotomy approach,
but we also want what the best method for her.
MontY: Where is she going to see neuro? my sister lives In Norhtern Virginia…I know there are excellent drs. there. I cannot imagine as a child going through this or you as a parent. If here is anything I can do, ansewr questions, etc. please let me know. I have had three embos…surgery in my case is not an option. I will keep you all in prayer. Please kep me updated…xoxox Mare
Thank you.
She is seeing a NS at JHU. We are fortunate to live nearby.
The decision as to the route of treatment will be made end of this week.
From the studies, it is relatively superficial. My best to you as well.
Monty
Hi Monty! You may have already seen my post on the other blog, but my 10 year old daughter was diagnosed last August, after a hemorrhage. I know how hard it is to watch your daughter have to go through all of the necessary tests etc. I also found the waiting between them to be hard. It was difficult for my daughter at first, but got easier as the diagnosis became the new reality. I don’t think it ever got easier on me! After 5 months of tests, consults, 2nd and 3rd opinions, we decided on embolization and craniotomy. She just had her surgery this past January. She did amazingly well! It is not an easy process by any means, but kids are very resilient. You will hear from many parents, about their success stories, which really helped me a lot! It is good that you found the AVM and are now on the path to treatment. I would be happy to answer any questions, to the best of my ability, as they arise. As you will hear from many people on this site, it is good to get more than one opinion on treatment plans. Many doctors have different approaches. It really helps in the decision making process. Our surgeon actually suggested it himself, and actually sent out for the second and third opinions from the places that we wanted them. We ultimately had him do the surgery, but felt much better about our decision after having consulted with several different doctors. We will keep you and your daughter in our prayers. Keep us posted.
Hello Monty. I have an 8-year-old daughter that has already had an AVM rupture (about 13 months ago) and now has an AVM that needs to be resolved via craniotomy (that is scheduled to happen in two weeks). It has to be such a shock for all of you. But having a treatment course will help settle things. Your daughter unfortunately has a lot to absorb, but you may be very surprised how well she can handle this. Children can be much stronger than most of us can ever imagine. It definitely helps to have people to talk to – both for her and for all of you. You may contact your local brain injury association for some ideas.
Thank you for your comments and prayers. It is more difficults for me, anticipating what the ultimate decision will be. “papa, I don’t want surgery” is resonating in my head and it is defintely hard to be objective. Watching her go through an angiogram was scary enough for me much less a what we anticipate. We will follow HIS will.
Monty, as hard as that conversation will be … I know from experience how much your daughter’s life could change if that AVM ruptures. My daughter who is now 8 and is lucky to be alive. An angio is scary. Believe me, a ruptured AVM is much scarier and can have much more long-term effect for your daughter.
Bright side to all this: We caught it early. It is now treatable under more controlled circumstances. We are near one of the best institutions that treat these. Yes, conversations have started, slowly. Her friends have been a great support for her as well. Next few days will be difficult. Again, I look at the bright side and thank God this presented to us now and not later with some catastropic event. Thanks Tina.
You caught this real early, a huge thing in your daughter’s favor. As hard as it is for a pre-teen to grasp, this is a life-saving treatment plan. Even with a craniotomy, it doesn’t have to be a big change for her. Doctors should be able to keep the incision hidden in her hair. My daughter is having her second craniotomy in a couple weeks. She will be hospitalized only 3-5 days. Your daughter’s friends and your family’s faith will provide the support you all need to get through this.
Monty, I think with this age group we worry a lot about how it will affect them. My daughter was 9 when she had a bleed. We didn’t know what an AVM was until that day. A month later she had recovered enough to have the craniotomy. Knowing what I know now I am so happy that we had the craniotomy. It’s not an option for everyone, but having it GONE is such a relief. I was more afraid of another bleed than I was of the craniotomy. I’m still over-protective, but I don’t think I could let her out of my sight if the AVM were still there. My daughter was a little younger, but she was scared of the surgery. Since she had experienced the bleed it was easy for her to understand it could happen again if she didn’t have it removed. We didn’t tell her the risks of the surgery, but we did tell her that her doctor was very good and that we’d have to have faith. Going in for the angio was terrifying for all of us. Try to stay strong. And be prepared for your daughters reaction as they put her under. My daughter was holding her fear in check, but the first med they give for relaxation broke that and she was crying when they asked us to leave. Heartbreaking, really. I wish they had let us stay until she was asleep.
wow…thanks rebecca for sharing. You have endured a lot. Yes the fears are real, all around. We have to be strong for our kids. Don’t let them catch you at your weakes point. We need to inspire confidence. I agree with you, faith and the best available specialist to take care of the problem, is what we should tell the child. I witnessed the reaction she had when she went under anesthesia for her angiogram. I will never forget. She had a strong hold on my hand and soon that hold was gone as she went to sleep. The fear of the unknown is always there.
Tina:
I wish you the best your daughter’s upcoming surgery.
Monty,
Hello and I’m sorry about your daughter’s condition. I was just doagnosed with my AVM in September 2009 after almost a year of mis-diagnosis. My docs told me that they will not operate on me (ie a craniotomy) because of where my AVM is located there would be too many risks so my next option is radiation treatment which I’ll be getting my referral for hopefully at the end of March. I’ve done tons of research on the internet (The best site to check out is http://neurosurgery.ucla.edu/default.cfm) I hope this helps and if you need more sites with more info just go to google and put in radiation to treat brain AVM. The only downside I can see at this point is that the treatments take a few years but really what’s a few years in comparison to an entire life. I hope this helps and you’ll be in my prayers.
jessica
Jessica:
I wish you the best for your upcoming radiosurgery. Gamma knife and the like are very precise. Yes there is a min. 2 yrs wait period for its effects to be fully realized, but love your outlook on this. Thanks for the reference.
hello Monty,
I was 33 when I had my surgery almost 2 yrs ago. My kids (11, 12 and 15 at the time) were there for me. They encouarged me every step of the way. They become my cheering squad. My mother went to every appt and was in the hospital with me the whole time. Although I was an adult just seeing my mom handling it so well and being optimistic through the whole thing really helped me. I know inside it was killing her but she never let it show around me. I think she will be scared but will handle it better than you think. My prayers are with ya’ll. I know all will be ok
Dear Monty, I know exactly how you feel. It was very hard to me to tell my son he had to undergo sugery, and I had to do this twice. I don´t know how I always talked about this to him with a smile in my face and with a very calm voice, like it was not myself in charge because inside I was very bad and sad. You, as a mum, is the one who is suffering more but at the same time need to be the strongest. Ask as many doctors as you can to chose the besto for you lovely girl. Lots of love. xxxx
Hi Monty, Please have read of my page, my son has had many operations due to avms and is finally free after a long hard journey.
I would love to help and support you along the way so please feel free to ask as many questions as you like and I wont be offended if you just want to rant at me. I know how hard it can be as a parent of a child with an avm. Big hugs Clare xx
Thanks everyone for the support. There are quite a wonderful heroic stories out there. We saw the neurosurgeon. They had an interdisciplinary conference and came to a conclusion that this is resectable. In my mind this is what my wife and I were hoping for. Although no one wants surgery for there child, this will be the best approach. Now the waiting game of when to do this. She is in school. The suggestion from the doctor is that wait until summer, when she is done with school. That is a long wait.
If the surgery is embolization do it now.Summer is a long wait and if something bad were to happen between now and then you would always think what if we had not have waited.Lila
2 days after surgery, Thank God all went well. I am in the hospital right now and she is sleeping. Major issue is pain right now. Neurosurgeon can’t give her too much narcotic analgesics as it will cloud her sensorium. There need to be able to do neuro checks every so often. She is also experiencing some eye pain (on the same side of her surgery). I anticipate that all this will be behind us soon. It is hard to believe that this just happened.