Son had Cerbellar AVM rupture in four spots, repaired by embolization, June of 2012. Still struggling with balance -- cannot walk without help

No problem.

THANK YOU KRISTI AND ANN!!!!

Believe it or not, both of you being SO honest, really helps. This is why I urge Leo to explore this sight -- at least if helps ME know that what he's going through is "normal", typical or whatever. EVERYONE!!!!! has all this inspirational crap to say about "God's will", etc. It doesn't help Leo AT all -- he is an aheist and was before all of this. At one point in the hospital he had to tell his grandparents keep the "praying over his bed, out loud" to a minimum.

I wish you (and everyone recovering from AVM surgery, bleeds, issues, symptoms, etc.), the best. Hopefully, you all will figure out a way to turn all of these experiences into something useful to you -- it's already been useful to someone else. And Ann -- Leo is going to see an acupuncturist (Dr. Zhu) in San Jose on Friday. I hope it helps in some way.

Agian, thank you both for sharing!

Dawn (Leo's mom)

Personally, I totally, completely understand how your son feels about the "God's will" thing. I am not religious, not an atheist either but I am somewhat more better fit with agnostic. I believe in science but I also believe in inner faith; I just don't believe it's one OR the other and I don't believe inner faith is always all about God or "that" kind of faith; sometimes it's just a matter of faith in yourself, trusting that you will make it through whatever obstacle you face.
I firmly believe that honesty is what is needed over false comfort. If your son is Atheist, he will NEVER be comforted by the words others find strength in- and that is words aimed at God to protect or whatever it is religious people do or believe. Some people experience their bleed or some other tragedy and they walk away (or roll or limp) with this "I found God," mentality, and the rest of just kind of go home and become bitter when people toss their religion at us as an excuse or reason why we should accept what happened to us (and expect us to accept this easier because //they// believe God's hand guided or intercepted or challenged us purposely). Some of us need to come to terms with this on our own, in our own way. And, unfortunately, some of us deal with our situations through anger, resistance, emotional breakdowns. :)

Thanks, Dawn, and I'm so glad Leo's going to go see a CMD. It's worth a shot.

I totally get why talking about "inspiration" and God's will would bug the poor guy. "Bug" is probably an understatement. I am a pretty vocal believer and it hurt my feelings terribly when people would talk about these things to me early on but I hadn't come to terms with the fact that God let this really bad thing happen to me. I try to remember now, though, that lots of people have no idea what to say, so they grasp at whatever is at hand, hoping to help. I'm glad, though, that L was able to speak up in the hospital.

Hi, I am then a little bit similar to your son without the ataxia part, but instead the tremor at right hand for the rupture plus I have had a bus accident, right now I am uusing a rollator to move,I've a cerebellar AVM and wanna study too.U He surely needs a lot of therapies and his extra motivation from himself to recover (a little extra moivation really works in such depressing moment)).When God wills, I am sure that your son gradually recovers.
Send him my regards, Willie.

I understand that he may be resistant to corresponding with others who have the same trouble. I've lurked on these boards for about a year, before I felt confident enough to start talking. I think even just reading our experiences would help. Reading about people who are able to work and go back to school keeps me hopeful, while at the same time reading about people who just aren't there yet lets me know that I'm not weird. Some of us progress faster than others, but that's ok.
The thread about how we keep ourselves busy has some great ideas: free online courses, a radio show, painting, book and movie clubs. Last summer I ran a vent for just general gamer chat. That was nice because the focus wasn't on my thing, it was on League of Legends, Minecraft, or World of Warcraft. Something similar (obviously not the same since I have no idea what he's into) might be nice for him. We need to socialize, it really helps.

Hello, Sacramento!
Your son is fortunate to have you as Dad! I am new, and saw a message you had posted about your son's balance. I wasn't able to figure out how to respond to that in particular, and hope this will do. Any kind of burst AVM on the cerebellum is going to result in balance problems, so we have been there. Your son must have had a particularly severe one. He is young, so that is great advantage in his recovery. If a stroke like that had happened to me, at age 47, I would be far behind where your son's recovery is. Here is some experience and I hope it helps.
I tried accupuncture, and was glad that I did it for the experience, but I don't think it helped me. HOWEVER, my wife thinks it helped me. It is true that my recovery picked up the pace after the accupunture, but I think that was coincidence. I am more of a skeptic than my wife.
Despite this, I still think accupuncture is worth trying.
Here is why I say this even though I don't think it "helped me". My sense is that accupunture is most helpful with a singular define issue, and it is not helpful with a larger nebulous problem. "Recovery from cerebellar AVM" is too big. It is better to use accupuncture for "balance while walking". If I were to do accupuncture over again, I would focus it more on clear singular problems.
Here is another thing I learned: the accupuncture people had expectations that were way out of wack with reality. I had 3 appointments per week. If I had an appointment on Monday, they were hoping I would show improvement for the Wednesday appointment! It wouldn't even occur to me that improvement would come that quickly. When they were genuinely disappointed on my behalf when I did not improve over two days, I deeply appreciated that they were on my side, and so obviously wanted me to recover, but they were not being realistic. It was unfair to accupuncture itself--it is not a good time frame to evaluate whether or not it helps. If you decide to use accupuncture, I recommend using it over the course of 3 to 4 weeks. It is possible that he may not think he is better, but you see improvement--or the other way around.
Be sure they know exactly what happened to your son. People hear the word "stroke" and tune out everything else. They may start treating your son as if he had blood clot travel to the brain, ie the traditional stroke. People make this mistake constantly.
The other aspect is that accupuncture may help, but for reasons other than the accupuncture itself. Here is what I mean: Your son may be very depressed, and at his age, he may not realize it. Young people can be very out of touch with feelings. He is stuck at home, not able to get out, the recovery is slow, the future may look depressing, etc.
The appointments for accupuncture can help because it gives your son an activity to focus on. He goes to the appointment, the accupuncturists are nice and interested in how he is doing, the other patients are kind and coversational. A recovery can be so bleak at times. Accupuncture may be way too expensive if that is what helps your son, so the challenge will be to find something else that will do that will provide this sort of stimulus.
If you are looking into accupuncture, my experience can be summed up this way. Give it 3-4 weeks, don't expect improvement over the course of mere days, look up the accupuncture place on line and make sure it is a friendly, kind place with a cozy mix of people (as opposed to one guy in a back office), and focus on a one or few smaller issues than "cerebellar AVM". Try balance or nausea as issues for the accupuncturists to tackle.
My recovery really took off when I started regular exercise. I don't mean physical therapy, but going to work-out exercise. I found a place I can walk to (which is wonderful in itself) and I go there nearly every day. I had to start off very slowly (I had lost 50 lbs, was very frail, and got sick easily). The head motions can seem like a lot at first, especially sit-ups! But over time, it was extremely helpful. Not just the exercise, but the walk to get there, the people one meets, conversation. This REALLY helped me.
If something makes your son dizzy or tired, it should be done (with common sense). Dizziness, nausea, balance, are all issues than need to be confronted slowly but surely. Most important, your son may be profoundly depressed, more than you or he know. Depression is common with us, and it is bad. I fight it everyday. God bless your son, and God bless you! Caregivers go through a lot, and they need to be recognized and appreciated. You are going through a lot, and are also a victim of the stroke, as is your son. For all you are doing, THANK YOU!

I have similar issues; I made the choice to accept the fact that I have to do things differently. I would still like to improve my balance without just concentrating on the basics of walking. I never knew what a chore it could be to talk and walk at the same time. I simply had no idea.

Regarding your son going back to college on his own, he’ll probably need to do so in a different way.

Also, you want to see if there’s a special needs department at his college who can assist in the different ways he might have to do things now.

Here are some links that I’ve been considering or looking into for a temporary “fix” until most buildings and facilities are easier to access:

The Balance Manual
http://www.thebalancemanual.com/

Dr. Clause
http://www.walkingwithataxia.com/

Motion Vest
http://www.motiontherapeutics.com/

Also, check out the sub-group on here for Cerebelar AVMs:
http://www.avmsurvivors.org/group/avms-of-the-cerebellum/forum/topics/help-for-sacramento-avm

I know that it can be overwhelming and frustrating, but keep the faith and know that you aren’t alone.

Adding onto Ann’s comments, I totally agree with the importance of keeping the core strong.

Bridging, 2nd position plies or squats while keeping the gut sucked in but still breathing (with a counter, table, rail, etc. to help balance - I found it easier to start with a low number like 5, then add 5 - I’m upto 30 now: and plan to keep that as my maximum :), and crunches to the opposite leg help keep obliques strong and the core strong.

I've been doing plies lately - thanks for the tip!!

HI Sacramento parent,

I haven't seen any updates from you and am wondering how your son is doing. He sounds so much like my husband (age 34). He doesn't leave the house except for therapy and plans to stay home until, as you said (he is whole again). His rupture was in the cerebellum as well and suffered many of same issues. Ataxia, loss of all function, dizziness, double vision, etc. He has improved dramatically, but still walks like an 80 year old man. Very slow.... Hope your son is making progress as well.

Everyone recovers differently it took me two years to feel 90%. Be patience and supportive and most of all positive for him