Help with 15 year old AVM survivor

My little sister is 15 and is at her 1 year and 4 month mark of recovery from an AVM that she had rupture last year. Yesterday she completely broke down and explained to us she is sick and tired of not being able to walk, her friends treat her differently, she wants to go away and never come back. This little girl is a miracle. She was told she would never live a normal life and she has overcome almost every obstacle and right now is working on walking again. Her bleed happened in her cerebellum therefore it is hugely affecting her balance. She also has ataxia in her left arm and is beyond frustrated with both. She sees a psychologist 2 times a month, but this is an older man who has no idea what she is going through.

I would love some advice as to how we can get in contact with someone who has been through what she is going through. She does not necessarily need to be on any type of anti-depressants, but I just want her to be excited about life! She deserves so much with what she has gone through, and being unhappy is the last thing I want. If I could I would have had this happen to me, but the Lord chose her for a reason.

Any advice?

If you think she would like to talk with others, I’d ask her therapist if he can recommend a support group. Does she go for physical/occupational/speech(cognitive) therapy? Perhaps they could recommend a support group as well.

As for connecting with others who know what it’s like, I’m going to email Ben to see if he would start a group for teens with AVMs. I know Nea mentioned she’d like to connect with other teens here.

danielle, this would be so hard for you to watch. these feelings are normal for your sister, many people want to give up in such times of struggle. stand by her and give her strength.
my family was told i would never walk or use my right side again, BUT, through tears, sweat, struggle and thoughts of wanting to “go away” and much needed support, i got better. im walking and my right side is almost 80% better. when i say better i mean, i can carry things with my right hand like shopping bags but i cant hold a cup of coffee, my reflexes are affected by my surgery.
this means my hand and arm have a mind of their own if i am startled in the slightest. (i can smile about it now)
my fine motor skills are not back 100% (this is so frustrating, till this day, so 5 years post op, i am going back to rehab next week to see what i can do about my right hand)

im your inbox i have sent you my email address, give this to your sister, i am here for her, she can email me anytime she likes.

talk to her doctor, change her psychologist, it is important that she has a connection with a psychologist, it is so hard when you are going through something and people want you to talk about it, its hard cos we are so scared and we don’t even know what we are thinking, so how do you talk about something you diont know anything about???.

please get back to me and tell me how you are going. your sister is a fighter, all AVM survivors are. you are in my prayers and thoughts.

xxx margaret

I know you said she doesn’t necessarily need to be on anti-depressants, but don’t discount it all together. Find a different therapist first, one that has experience with all kinds of post traumatic stress, for example. Medication helped me so much! I still have my share of deficits too, but I don’t cry about them all the time anymore. I think the meds just make it a little easier to deal with sometimes.

Something I have seen work with many people is to focus on something other than yourself. For example, volunteering at a children’s hospital on saturday mornings. Helping others is sometimes the best way to help yourself.

She would find additional strength for physical therapy since these children would be cheering her on. She knows what it feels like and she’ll find herself giving strength and support to others instead of focusing on her own obstacles.

What kind of ataxia does she have? http://www.livingwithataxia.org is a sister patient community to this one.

Dear Danielle my thoughts are with you. My advise would be the same as Ben. Focusing their thoughts and energy on something other than themselves is sometimes a therapy in itself. Though my stituation was of a different story (cancer) my daughter was 15 also when she lost her leg. It was a long road back but focusing her mind in other areas, therapy and a lot of support is what helped her. I am always here to talk when you need to. I believe the Lord chooses us or our daughters for a reason too.

I agree with Nea’s Mom about a group on this site for teens with AVMs .

Debbie

Thank you all for your support. We have talked with her doctor and they have decided to put her on Zoloft for a trial and see how she emotionally does with it.
She did not go to school for a couple days, and she has decided she wants to switch schools. She wants to start fresh and meet new friends. More power to her! I also took some time with her and explained to her this website and how awesome it would be for her to realize that she is not alone, so she may have a profile on here soon!!

Thank you again for all of your advice, this website is awesome! God Bless.

I did create a group for teens. Not sure how to get the word out, how to let teens here know it’s there for them…

I had my AVM burst at 15 and had surgery (so much like your sister!). I had PTSD from it, I think, and depression so severe that I wanted to die. Yes, people do treat you differently, and it is awful going through this in high school. Please contact me at any time and I would love to talk to you more about this.

hey im Bethany i was 16 when i went through my Avm. feel free to contact me if you need help on
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