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AVM Survivors Network

What do parents want to know about AVM

#1

Good day all. I became a member shortly after my son suffered an AVM rupture. Now I am writing my doctoral dissertation and am creating a parent’s guide to understanding and navigating through AVM in your child. What can all you beautiful caretakers and survivors offer me? What do you wish the doctors and staff would have shared with you? What would have helped you when you returned home? Return to school or work? Any and all suggestions are welcome and your assistance is everything to me and my family!!!

#2

I wish my neurosurgeon and neurologist would have been a little more bluntly honest with me; I know it’s difficult as they try to encourage you and not limit you but a blunt assessment of my deficits would have helped me know my limits earlier.
not sure this is completely on the neuro team and maybe a bit on my physical therapist after they evaluated me… but I really thought I would be back to normal quicker; it’s now 3 years and I’m not even close… it probably would have helped my mental state of mind having a better idea of what I was dealing with versus the pie-in-the-sky anything’s possible attitude from the neuro team but I’m sure each individual is different, some need sympathy and understanding and others a kick in the butt.

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#3

After my bleed and the following process on what my options are and what would be best one point has stuck with me, and was a huge influence on my decision. I had a doctor answer my question “If it was you, what would you do?” I did make it clear that I know I was my decision, but appreciated that greatly. I feel while there is no absolutes I was making the right decision based on what we knew.

The other part is letting all know the time it takes to recover, and that a lot of people will misunderstand certain things during recovery. For example being tired…or as I began to refer to it fatigued. Until you actually experience it, or someone close to you, people will not get it. If I talked to someone for a couple minutes I needed to go lay down, this went away eventually. Patience with a capital P, on all involved. My neuro team got that, bless their hearts, some close to me took some time to realize I needed more time, more rest and had some trouble finding words at times.

Overall I was lucky, from my caregivers to my recovery. These are a couple things that pop to mind. Thanks for doing this and please post a link when completed, would love to read it. As an aside my wife is a nurse with a PhD, so best of luck, it will be a great achievement! Take Care, John.

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#4

@JD12… you’re correct… probably the most important point is patience, because I never realized how painstakingly slow the recovery process was going to be!

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#5

I wish I had a guide when my son had an AVM rupture (and strokes after). Thank you for doing this…it will help a lot of people.
Things I wish I knew along the way:

  1. Push for the hospital you want your child taken to. You have that right.
  2. Make sure there is a vascular neurosurgeon in the room for all surgeries of the brain. They had this for my son the first day. But they went back in 3 days later and there wasn’t one. He stroked all over while that Dr tried to remove other AVMs.
  3. Make sure when your child goes to rehab, its connected to a top hospital and the rehab and hospital work together. Meaning, you are not discharged from 1 to go to the other. Dr can visit your child in the rehab. Also make sure the rehab is well staffed.(example: CHOP/ seashore rehab)
  4. Request PT/OT right away…even if your child is just laying there. Ask for boots for feet (and not lined with any hot material). My son “stormed” for a while and had fevers.
  5. Start looking into your States Medicaid or other resources for nursing care for your child once home.
    If your social worker at the rehab is not helpful, see if the hospital social worker could advise you. And see what free advocate groups could help. Have an advocate with you for discharge plan. They will explain things to you better than the hospital/ rehab while your head is still spinning.
  6. Get in touch with your school district and get the ball rolling for a specialized school with OT, PT, speech. Also look into outpatient OT, pt, speech.
  7. Figure out transportation…special van for wheelchair, etc. If you are in NJ, look into the nj Catestrophic fund. It takes time for reimbursement…but these Van’s are very expensive.
  8. Think ahead on what changes you will need to make to your house ( ramps, etc)
  9. Have love and patients…its a very long road.
    Celebrate all the small wins.
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#6

When I had my brain AVM rupture I was at the age of 10. Things that were the most tricky for me were school. Was a well known kid was bright but most of the class members didn’t understand what my struggles were after my brain AVM and surgeries. Was confusing to friends with my short term memory loss and small seizures that would happen.

At age 11 was gone for 3 months in the hospital. Doctors had done more MRI scans and found 3 small blood clots that had formed from my rupture. So 3 more surgeries. Was back in school again but you could say people understood my problems better but were still afraid I would have a seizure. Have gone over 10 years without having a seizure. From 2002 to 2014 didn’t have a seizure till then. Cause of my last one the doctors figured because of generics instead of brand name so brand name is what I’m on now.

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#7

Hi Did, I think it’s a good thing that you’re doing and I’m willing to help if you ask me. I had an AVM bleed at age 14 (I’m 59), 2 craniotomies seizures/meds since then and all of the emotional/memory/mental issues attached.
As for things from my parents’ perspective, it is hard to know at age 14. I know I was going through adolescence/puberty and that didn’t make things easier (and makes lasting effects.) My parents were naturally nurturing and protective. Those were the early days of this kind of surgery so they were definitely fearful.
At the same time I would say that it’s important for parents to give their kids enough space to make mistakes and fail/succeed during the ordeal. The need to develop courage and self-reliance is crucial at any age after infancy. This sometimes runs counter to a parent’s natural inclination. It’s a balancing act based on many factors: child’s age/maturity, physical risks, social support/resources and personality.
I hope this helps parents forge a path using a long-term perspective. Greg

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#8

I don’t know what it’s like to go through this as a child. But for me one of the biggest challenges has been emotional. I started getting counseling at about six months post surgery and I wish I done it earlier. So my input would be to make sure you get some professional emotional support

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#9

What discipline is your PhD in? I’ve thought a few times about writing something for parents and I’d focus on the rehab phase through to going home and getting child back to school and continuing rehab at home and school.

My first thought when I read your post was the fact that every AVM journey is so unique. I’m sure that’s the case with any illness or condition but AVMs can affect people so differently.

I guess you’re focusing on cases where a bleed has occurred? If so, this is a rough list of things you could address.

While still in ICU and acute care:
-depending on how your child is doing (in our case not very well for the first 4 weeks) you will feel like everyone and their uncle comes to poke and prod your child; find out their name, department and why they’ve come–if they’re a resident you may never see them again so knowing the dept they were with is very important
-keep a notebook in your child’s room and to the best of your ability, take note of every person who comes in to see your child, when they came and what they tell you/want to know; ask anyone giving you a break to do the same so you know what’s happened when you were gone
-the nurses and other care givers are angels; tell them how much you appreciate them and ask visitors to bring them treats and coffee
-participate in the daily rounds when the team talks about your child’s care and condition. At first it’s another language but you learn it quickly. Ask questions because you deserve to understand what’s going on.
-if you’re at a teaching hospital which many are, doctors will often have an entourage of students–if you’re overwhelmed, ask them to leave
-also if you’re overwhelmed ask a social worker to come to see you
-if you have other children, ask if a child life specialist can meet with them to explain what’s happening with your child who’s ill
-call upon friends and family to give you breaks so you can get out of the room for a bit–also let them keep you well fed
-you will need to advocate for you child now and for years to come so ask lots of questions
-the PICU can be a very scary place especially when staff has to respond to a code–again, if you’re not coping well ask to talk to a social worker

Transitioning to rehab facility:
-find out if you can you visit the facility before transfer–ours was a 75 minute drive away so we had to leave our daughter with a close friend for several hours in order to take the tour, but it was worth it
-what level of care does the rehab hospital provide? --our daughter still had a trach at time of transfer so we had to go to a complex care floor then later move to brain injury area when trach removed–not ideal and this caused problems
-are rooms private or shared? We had to advocate STRONGLY for a private room as our daughter became frightened and agitated easily. She needed a private room. Most rooms were shared.
-where can parents stay?
-are visits to home allowed on the weekend?
-what’s the avg length of stay?
-what factors determine how long a patient stays? --average stay at our place I think was 5 weeks, we stayed 5 months; hardest thing we’ve ever done but worth it in the end
-what therapies will your child receive and how often?
-what is your child expected to do when not in therapy? (recreation? School? Sleep? Rest?) – ours was expected to attend “school” but she couldn’t speak or write and was often agitated by noise. The teacher was a bully who would come up to our room where my daughter was resting or sleeping between therapy sessions to ask why she wasn’t in “school”–this was an unexpected nightmare situation until I told the school principal she wouldn’t be going to any class until she was able to participate
-find out what services are provided for parents and if there is someone will stay with your child so you can take advantage of the programs–I could only take part during our last 6 weeks because before that my daughter was too terrified/not conscious enough to understand what I was doing
-are there counsellors or social workers to support you?
-will your child receive neuropsychological testing at the rehab hospital–very important for return to school

Ok that’s all I can do for now. You can probably see how seriously I’ve considered doing a similar thing. I should note also that I am a teacher. I would never deny my child the opportunity to go to school, but she was still incredibly sick and at a level of reduced consciousness. She didn’t understand the very loud and busy classroom that we were sending her to. All the kids were nonverbal but most were long term residents or there for respite care and had been disabled since birth. Many cried or screamed. It was a nightmare for her and me.

#10

I love everything you’ve written but the last bit most of all. It’s been just over two years for my daughter and we’re still celebrating the small wins all the time. Yesterday was playing outside in the snow with a friend but WITHOUT me!

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