I am posting this for a friend whose daughter is recovering from an AVM. The family needs any insight from your experience. Thanks You! Here is her post:
Any words of wisdom out there related to suffering from agitation along the road of recovery? Our 15 year old daughter is 6 months post AVM rupture and subsequent surgery removing portion of cerebellum and clot at top of brain stem. Appears very sensitive to touch. Likely scared and confused. Started to walk, but regressed at onset of agitation as she resists being held by therapist or equipment. Very strong, able to sit up, has great aim kicking and reaching with right arm, even good fine motor skills in right hand, left coming along. However, not talking or taking anything by mouth. After trying various meds to subdue, Physiatrist now recommending moving towards behavioral treatment with more limited PT, OT, ST. Just wanting best scenario to help get through agitation stage. Would appreciate comments on personal experience and recommendations on facilities and methods for rehab.
Hi and welcome,
I’m not sure what all you mean by agitation. An AVM rupture and subsequent surgery is like a train wreck in the brain, and along with medications, can lead to a lot of disorientation. Depression very often occurs and should be dealt with.
I would be concerned of limiting OT and PT. In rehab, I’ve heard that whatever capability you gain back in the first SIX months is the maximum and that any recovery after six months is much harder to achieve. I would push to have OT, PT, and whatever other treatment she needed.
Hi DBJ and friend. I have to admit I was surprised to see the comment ‘with more limited PT"’. Everything I read says the quicker you get PT/ST the better. I know there are issues but how many AVM experts have examined this 15 yr.old? What does the neurologist say?
How much experience does the psychiatrist have with brain injuries?
Facilities…well the one I went to in Atlanta was sued so many times…they are out of business. Thank God…the place was a nightmare!
Some of my friends on here took years to recover but they did recover. I will be praying for this family!
I agree with Ron and Barbara…limiting PT is not the solution. It is very important to have as much PT as possible, especially soon after a rupture and surgery. Getting her physical self better can definitely improve her attitude. She, most likely, is very frustrated that she cannot do the things she used to do and she may not have a clear understanding of what has happened to her yet, thus the agitation you describe. Also, it’s very common after a brain injury to have mood swings, anger, and depression. I’m a little annoyed for her that the psychiatrist is recommending behavioral therapy. Not saying she doesn’t need some sort of therapy to help her, but it sounds to me that this doctor has no clear understanding of the effects of a brain injury. to me, it’s making it sound like she’s a disgruntled teenager. No, she has a brain injury and she needs doctors that understand brain injuries! I wish the family all the best.
Welcome…my AVM Survivor Friends are telling you exactly what I would write. Please explain to her family that they must get the best doctors that totally understand what is the best for a person who has had a brain injury. I totally understand how that young girl is thinking right now…I felt the exact same way after my brain bleed…I thought I was OK, and didn’t need help, but I was so wrong…You all will be in my prayers!
Hi All, thank you for your replies. I think I need to clear up what my friend was asking. (I copied and pasted her question from an email she sent me. It all makes sense to me, but I am very familiar with her daughter’s circumstance.) The patient (not sure if she wants me to use their names) is under the care of neuro surgeon Dr. Barrow, from Emory, and the entire in-patient rehabilitation team at Children’s Hospital of Atlanta; which includes neuro surgeons from both CHOA and Emory. Her doctors are rated some of the best in the country, as is the rehab facility for children. The recommendation of her focusing on behavioral treatment was given by her Physiatrist, not psychologist. The patient has physically shown aggression – hitting, kicking swinging at her caregivers and therapists. She resists doing her therapies to the point of exhaustion. She is unable to eat (fed through stomach tube) or speak, and only periodically responds with body language when asked a question or given a command. She was making good progress starting to use her legs and focusing more when she left the in-patient rehab at CHOA the first time. She did out-patient rehab at CHOA, but she was admitted back to in-patient when they realized she needed more intense therapy on a daily basis. Currently, the doctors are trying to find the right meds to help her mood, as she has been through a variety of meds that do not help. Her parents realize she is only 6 months out, and has many more to go for recovery, however they are looking for insight from anyone who has experienced this degree of agitation and how they dealt with it - as both a patient and/or parent. The need to control her agitation is directly related to her need for PT, OT and Speech. They can’t do those without getting the mood under control. Thank you again for your replies and please give any input after reading this updated post.
i wouldnt limit therapy either but…being touched…i am still paralyzed on the left side, i am 2 months post crani and4 months post bleed. i had to stop therapy because i am 8 months preg and live in a second floor apartment. it exhausts me to go downstairs and after therapy i am too tired to make it back upstairs. anyway, when ppl touch me (my poor husband) its like getting a two handed indian burn, and that is just with fingertips that r at the same temp as my skin. if the hands r colder than my skin its like being burned with dry ice. if they are slightly warmer than my skin, its like boiling water that is still bubbling. if i touch my cane on accident where the metal is exposed, im brought to near tears because it just hurts. sometimes tuching objects (or objects touching me, rather) its like someone scraping a thickgrade of sandpaper across my skin. it can b very irrtating. especially in the begining.
I don’t know if meds are the complete answer. But if she doesn’t like to be touched, don’t touch her. Maybe it’s the sex of the PT people. My son hated having guys for PT and hated having girls for nurses. Also don’t forget that she’s most likely pissed off as hell and has every right to feel it. My son liked the tybo dummies, the one that lights up when you hit it hard enough. Our PT guys did big movements like hitting& kicking first. He sometimes still will flip out when touched especially after a headache. I also taught him sign language to help him communicate when he has a headache. They’re plenty of signs that can be done one-handed. A computer might work too. She could press the buttons to tell people what is wrong,what things feel like,etc. All it takes is a finger. You could even get fabric samples to use for how something feels. It sounds like she’s feeling all wrong,that nothing works right to her anymore,she can’t communicate much,and she’s extremely frustrated and pissed off. If you can figure out what she’s feeling it might help. My son said that hands felt weird. That calluses felt like sandpaper and latex gloves felt like he was going to slide out of that person’s hands. He used to say that he could feel the ridges in fingerprints. Our PT people had to wear those stretchy gloves or leather gloves over the latex ones. Also we ended up having to schedule PT around how things felt to him and pain meds. We would check to see if touch was weird or painful. If painful,they gave pain meds then would do PT. If it got pushed back, so be it. But it did get done, even if I was doing it at midnight. I learned the hard way that you have to do most things on his schedule,not the doc’s. No one responds the same way.
And please don’t say that she’s depressed. Of course she is. She wants her body and life back. I had to listen to my David say that he wanted to me to just let him go. He asked why we got him fixed in the first place and that we should’ve let him die when he was a baby. I told him that once we had him we didn’t know what to do without him and that he wasn’t allowed to die period! Adults have a hard time dealing with all this crap. I still can’t figure out why everyone seems to expect kids to deal with it and just bounce back like nothing happened. It’s not like they just had minor health problems. This is major shit hitting the fan,life or death,life-altering,personality changing crap.
One other thing. Don’t forget that girls are different from boys. They need their girly things;make up,hair stuff,their friends,bed stuff,etc. How they look is important. Boys generally don’t give a damn.
Also have they tried pool therapy? If not, it might give her an incentive to suffer through PT.
Hi, I had a cerebellar avm and I was told that emotions are linked to that area of the brain. My avm was on top of the brain so I only have a small scar on my cerebellum but if your friends daughter had a portion of it removed then it seems like her emotional issues may be more extreme. It takes a long time for your brain to heal and to compensate for what was lost. Almost sound similar to Post tramatic stress disorder too. She dosent like to be touched and isnt talking or eating? Not sure if its physically caused or maybe psychologically like in PTSD. Maybe a neuro rehabilitation center would be something to try where they could determin if she has any cognative deficits. I wish your friends luck dealing with all they are going through.
Thank you all for your replies. I am forwarding them to my friend, who I’m sure will find your input of great value. I will post her responses to your input when she gets back to me. So glad to have found others who can help her daughter’s recovery!
