AVM Survivors Network

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

My son is 20, had a cerebellar hemorrhage (high-pressure rupture in four spots) almost two years ago. He was hospitalized for 11 weeks, 1/2 of which was acute rehab, came home on a feeding tube (inability to swallow), with pretty significant ataxia, doubled vision, and generally laking in fine motor and large motor skills. He made really fast gains in the first 8 months or so, but is still not able to walk without assistance (therapy belt, walker, or someone behind him holding under his armpits). He's kind of been at the same level of balance for at least six months -- right on the verge of walking by himself. Does anyone have any tips for therapy, techniques, accupuncture, oxygen therapy, anything to help regain his balance. He's right there -- but seems to be at a stand still? Is it just a matter of time? (it'll be two years in June). He's a college student and we were all REALLY hoping that someday he'd be able to go back to school someday (on his own).

Is your sons residual effects (affects?) one-sided? Mine are one sided (hemiparetic). Is your son still in therapy? There are things that can be done to retrain. It's been two years since my bleed I am unfortunately still hemiparetic. I was told the first 6-9 months bring the quickest gains. They also said that by the end of the first year, everything slows down but it's not the end! There are many stories of continued success after the first year...some as long as 6 years or even longer! It takes a lot of strength, not just from your son but for your son as well. Never give up hope and always be supportive and try to encourage as much as possible. You have to be his positive voice. Even when you are doubtful you CANNOT let him know it or see or feel it. You cannot let his limitations get in the way of his progress, either. That's all the advice I have. I'm sorry I can't do more.
That site is more for hemiparetics, I believe, but there are some good basic balance exercises that maybe could help. Worth a try.

Hi Ann -- thank you for your response. It is definitely nice to hear from someone who had a similar AVM issue. What is a "CMD"? and where do you live? We're in Sacramento and recently heard about a Dr. Zhu (acupuncturist) in the San Jose area (definitely doable). We were thinking about trying that. Also, did you struggle with ataxia? That's the reason my son hasn't used a cane because until recently, the ataxia presented another problem --difficulty in placement of the cane. Also, how old are you if you don't mind me asking? Leo is 20 -- had just finished his freshman year at Cornell when his AVM bled.

I linked to your blog and website and found some of the answers (your age and CMD means Chinese Medicine Doctor). Do you live alone again, or do you still require someone else's care? I think one of the difficult things for my son is that he was just really becoming independent (away at college). We still do SO much for him. He does like alone time. I would really like to connect you guys by email. I think it would REALLY benefit him since you have the most similar case that we've come across. I think there are things he doesn't share with us (because it upsets us). I would love it if someday he could meet you. His sister is getting ready to graduate from Seattle University and is planning to stay there. We'll be coming up there in mid June. His email address is ■■■■■■■■■■■■■■■■■. I will tell him about you when he wakes up.

Yes, his bleed was on the left side and for a long time he almost had no sensation in his left hand, etc. He has improved in this are quite a bit but there is still some difference. One of the things he has struggled with quite a bit, is ataxia (discordinated and hyper-refelxive reactions and movements). It's really improved a lot lately. Was your vision affected (his is slightly doubled and he's see two different neuro opthamologists. He has tape on his glasses, to force the eyes to work together. The other big hurdle right now, is balance -- preventing him from walking on his own. Yes, he's still getting PT, four ish days a week. And yes, the biggest improvements were in the first 6 - 9 months. He also has had about 5 seizures. They're much milder, always happen while sleeping, but he always feels a little sluggish the next day. His biggest hurdle is psychological -- three steps forward, one step back, slow improvements, and abandonment by friends and classmates moving on with their lives. He does see a therapist and recently has expressed a willingness to entertain an anti-depressant. I've tried to get him to look at this website, but he won't yet -- probably a terrible reminder. Unlike most people he DOES not find any comfort in corresponding and meeting people who have experienced similar injuries. Than you for your advice and knowledge.

He showed me your email exchange. He acted like he wasn't interested in reading anything from you but of course he did. If you don't mind, continue to email him every so often (if it's not too much trouble). He isolates himself -- very self-contious, wants as few people as possible to see him. Wont' go to the park because he need assistance getting to a bench or would have to use a wheelchair. Won't use his walker except when he goes to out-patient therapy with his grandparents. He's 20 and hasn't dealt with ANY adversity or real disappointments in life, so he hasn't gotten to the point where he has just resigned to what life has dealt him and said to himself, "well this is what I have, and I'm just gonna make the best of it and live". He's basically waiting until his "whole" again. He says he's not interested in comparing notes with someone who's dealing with the same kinds of things, but I really think it will be valuable for him. I really appreciate it.

I have a couple more questions. Was your speech impaired? Vision? have they both corrected? And do you (or did you) have seizures? Leo's vision is still slightly doubled and his speech sounds like he got an injection in his tongue. Sometimes it's clearer than other times. He gets angry if someone asks him to repeat something more that once. (It's usually me). I'm his mother by the way. Dawn

Having had my brain bleed stroke eleven years ago, I can attest that my doctor was wrong when he told me, "Whatever return you get in six to twelve months is all you will get." My recovery, while it definitely slowed down a lot after 6-8 months, did not stop for about eight years! The effects of my stroke (balance problems, mild ataxia, mild speech issues when tired, low stamina) have never left me, but they have become decidedly less intrusive in my daily life. So tell your son, "Don't ever give up!" Keep working hard, and the rewards will come.

Thank you! Were you able to go back to most of your normal life? Live independently?

Yes, I was, but it happened gradually over time. I had to give up certain hobbies ([1] I can no longer ride a motorcycle; [2] when I swing a golf club I feel like I'm walking a tightrope; and [3] I used to be able to cast a fly rod with either hand, but now only the left hand), but I can do almost anything I used to do, only less of it before I get tired. Today I have to cut the grass; I refer to my lawnmower as "my red Toro walker."

These things did not come quickly; there is true value in perseverance and doggedness.

Johnny I love your reply. I was told the EXACT SAME THING. I was disappointed after I left inpat rehab and sought an outpatient occupational therapist, for some reason in inpat, everyone was under the same impression: forget your arm if your fingers don't work but there will ALWAYS be a chance for your leg. My first outpat OT said it wasn't true. She said no matter what, there is always a chance FOR BOTH. It's so sad when therapists put stats before the patient, diminishing hope, a patient is lucky when they find a therapist that still believes in the talents they hold within their jobs.
Your little tiny reply here gave me more hope than I have had in over a year and I'm only 2 years post bleed! I also have the same probs, balance, mild ataxia, low stamina, I thought those would fade but so far have not and sometimes I'm on this site reading and I feel like the only who hasn't...faded out these symptoms. This site can be depressing but I'd be lost without it!

"red Toro walker" - love it! And I'm so pleased that you proved the medical opinions wrong and continued to improve. That's what I'm aiming for.

Can I tell a little bit about my suituation? It probably won't help, it probably will make you mad and probably won't get your hopes up.
From what I am reading here, your son sounds a lot like what I went through and am still going through. I don't leave my house. My husband picks up my meds, he brings our son to school and picks him up, he does the grocery shopping. I just stay here hoping I don't get fat. I'm always online. I hate my cane. I'm always depressed. I have NO friends. My family has deserted me saying I'm difficult, I'm selfish, I have no respect but in all honesty I don't lack respect, I lack patience. I don't have patience for false conversations, I don't have patience for people telling me to think positive and God bless and be thankful. I know these things, I really don't need people wasting my time and their breath repeating this same crap to me over and over. I said I don't have friends and I don't want them anymore. I wish they had stayed or tried harder to understand but they didn't and I can't go through that rejection again and I can't blame them for any of that either because people like me make people uncomfortable. No one wants to see that not everyone is perfect. No one wants to see that people get hit by the ugly stick after they spent 20+ years unbeaten by that stick. Life sucks.
I locked myself in my room to cry it all out. I'm 29 now, was 27 when I had my bleed was 28 when this happened. I cried for weeks. I deleted my facebook. I wrote black letters to myself about how much I hated myself, how much I wish I had died, how much better my kids would be if that damn stroke had killed me. How I wish I would fall right on my skull flap and break it, killing me. It sucks. I can totally relate to your sons emotions from what I am reading. My husband, he realized it was hopeless to be the textbook support counsellors told him to be. He knew I am too realistic for that, too much of a cynic, too much of a pessimist. So he let me just go but always reminded me of why I am here with little bits of odd encouragement. "Remember the last time you tried that and you almost spilled your coffee?" Just to remind me that things had been more difficult at one point.
Recovery of this magnitude comes in so many varying degrees and each of our personalities create even more differentiating results and sometimes problems. Brain bleeds can change not only your attitude but your entire thought process and patterns. They can make you more aware indirectly or force you to have no choice but to be more aware, such as blindess or dbl vision. I do not have double vision, I have a blank spot in the bottom left corner of my left eye and possibly my right eye, not sure, I can't remember how much of my nose I could see with that eye before.
Everytime your son realizes or comes across a new limitation or barrier it will be a set back, almost no doubt about it. It is for me still. I am always rallying against myself because I seriously really truly hate the new me. There's nothing I can do about it except look at my kids and hide the bitterness I feel just to protect them.
The public sucks. I hate the stares and I feel them before I see them. My body reacts....there's this thing called alien hand syndrome? I don't think it's a real thing but there are some vids that I relate to because when someone is staring at me, my arm pops out, my fingers curl up, my leg gets stiff, it's incredibly embarassing. And eye contact? That will never happen, I'm too busy checking for the floor for possible hazards. Speech? I got lucky, my facial palsy was extremely temporary BUT when I get nervous I get that tongue injection thing and slur all over the place.
I don't have advice just that this is a phase that sometimes never ends or goes into remission every now and then eventually. You have to trust him and listen to him, he knows how he feels and he needs to get it out but he might be afraid because getting it out means confronting it and that leads to acknowledgement and acceptance and that is so very difficult to go through. No one wants to acknowledge and accept that they are disabled, not at his age especially. He will find his strength, you just have to hold it for him, keep it safe until he's ready to bear that burden because that's what stength is...a burden.

Sometimes you have to go through the dark to see the light, there isn't always an easier way around it, that's all I'm saying.

Hey, Kristi - what you wrote was heartbreaking <3 but the part about "I just sit here hoping I don't get fat" was hysterical. FYI the ship has sailed for me on that one. I have gained 1/3+ of my preAVM/Stroke body mass. Took us over a year to figure out that the meds were doing this, not just sitting in a wheelchair. For a long time I was like, What?! I have to sit in this chair AND get big? Yeah - and it's probably the least of my problems.

Hey, kristi, I'm your friend, even if just a virtual one...

Sacramento mom, we are all rooting for your son here and hoping he makes a full recovery. I have noticed that our young adults have the most difficult time adjusting, and the brighter their prospects before surgery, the harder it is to accept a setback. Your son will fare much better if he can continue to visualize his situation as a temporary setback, rather than a permanent situation. Sometimes counseling can be helpful, but it depends on the person; caregivers and parents sometimes need counseling, too.

There is a group for 20-somethings; when your son is ready to join, I think it might be helpful to him: http://www.avmsurvivors.org/group/people-in-their-early-20-s

Best wishes!

I wonder, Sacramento mom, has your son ever tried an anti-gravity treadmill (http://en.wikipedia.org/wiki/Anti-Gravity_Treadmill)? It might allow him to retrain balance as well as the muscles needed to walk on his own. A lot of physical therapy places have them. Psychologically, too, it would be a big boost for him if he were able to feel again what it's like to walk normally. It's worth looking into.

Oh Dancermom I know! Virtual friends are great but when you're 20 like Dawn's son, it's the ones that can actually hold your hands that seem to matter the most. I think with such a young age it's harder to reach out so all the hope lies in hoping someone will reach towards them and even then it is so difficult to admit that you need that hand. That's really hard, especialy for people who have tasted or lived a life of indepedence. I know for me it is so very difficult knowing that I will always need someone to keep an eye on me. It's one of the many other reasons why I don't want friends. I don't want to make anyone feel like window shopping is a chore or going to get a coffee is like babysitting. Being disabled requires so much patience, being near someone disabled requires patience and patience is a very expensive virtue that I can't afford because my mind is so focused on: "bend knee, bend;" "don't let the stares get you;" "tuck that arm in" "back straight" "control your breathing;" "watch out for that pebble!" "Don't hitch your hip." There is a lot to think about when I move so patience dwindles and as a result, it gets pushed further down the list of priorities LOL

Thank you dancermom!

He uses a treadmill in outpatient (that has a harness). He's graduated to using it like anyone would -- at a very low speed and as long as there are handles to hold on to. And we have a treadmill at home he uses.

As far as counseling -- he's on his third therapist. He likes this one. And I agree -- the more potential, probably the more difficult it is to accept. He said one day --- "I did everything right, I did everything adults tell you -- if you work hard enough, you can do anything you want to do, and look what happened". I will try to get him to join the support group. Like Kristi said, I think corresponding with other people with huge hurdles to overcome, is depressing for him. He really has come a long way -- it's just taken way longer than he (& we) expected. Of course, we had absolutely, not frame of reference.

Thank you all for you comments and suggestions

Have you looked into what might help curb the effects of your meds? I went to see my sons nutritionist a few weeks ago and he was amazed at my son's growth and iron levels. He's 95th percentile in both height and weight. I told him about his milk consumption, whole milk. And he was amazed that he drinks so much milk and still has perfect iron levels. So he pulled out this report on milk and told me why he was shocked to see his numbers looking so well. They used to say when I was a kid that milk is good for you, pretty much no matter what, milk will always be good for you. But this new study revealed that the milk decreases or slows your bodies ability to absorb irons. I'm going from memory here so if I misword, my bad. Anyway, when he said that, something clicked. I was anemic both of my pregnancies. My first preg I chugged milk, no exaggerration, about 3/4 to a galon a day. I just craved it sooo bad and I gained an impressive 60 pounds because of it too lol. Anyway, I was on a diet the first half of my pregnancy because I was in inpatient rehab from the stroke. I never tested anemic. But then I got home and I drank and ate whatever I wanted and that was milk and again, I chugged it and tested as anemic. 6 weeks after both deliveries I was no longer anemic. I told the nutritionist this and he said that if I had taken vitamin C with my milk (Idk if he meant like a supplement or drink a glass of OJ with it, omg is that why in the commercials and the movies there's always a glass of OJ with the milk?? Iiiinnnteresting). Anyway point is, maybe your meds block something or feed into something. What meds do you take?
Oh and he said this doesn't apply if you get your iron from bloods in meats, especially iron enriched meats like liver. I forgot what he called it.
O and sorry I posted this long thing on your thread Sacramento :)