Advice on expectations for recovery

My younger brother had an AVM rupture August 8, 2013. He had a massive frontal bleed and was not expected to survive the bleed. I am happy to say he did. The neurosurgeon expected him to recover most of his function over time. The doctors really expected speech to be the area that created the most problem. My brother is left handed and his right side was effected by the bleed. His speech has been good with only some cognitive problems that are worse when he gets upset and frustrated. However he has not regaine motor function on his right side or left leg. He has increased tone that the doctors don't seem to be able to eliminate. He can use his left hand to feed himself but he still cannot sit up on his own. He has been transfered from one facility to the next based on his progress or lack there of according to insurance guidelines. We do see small improvements in his function. He is 47 now and in a nursing home which is frustrating for him. We want him to stay there as long as possible because of therapy. We are 4 months into his recovery and the last doctor told us to prepare ourselves that this was as good as he would get. She was a physical medicine doctor and honestly I don't know how things could change from the group of neurosurgeons to her. M brother fell apart when she said that to ous. We have been able to help motivate him to keep pushing with therapy to regain as much function as he can. We have chosen to consider that particular doctor as misinformed and think of the surgeons as the experts that know more than she does. He is very tough and determined. Any advice about how two different doctors can have such different ideas of his outcome? I have been a little thrown off by his lack of mobility. I didn't expect him to walk right away but I expected him to be able to sit up or even stand with assistance but maybe 4 months is not enough time and it may take a year or longer, any comments?

Wendy, I can't believe that doctor said he was as good as he can get after only 4 months. It takes more time to recovery from a brain bleed than just having a broken leg. Please tell your brother that he will get better step by step. Please tell him that my rupture was 6 years ago and I still have improvements step by step.

We are here to support your brother. The best advise is for him to stay positive and keep trying!

Wendy, tell your brother to not give up because of what that one doctor said. I’m very surprised that she would say something like that! I agree with the other commenter that recovery from a bleed is slow, but it will happen if he keeps at it. My bleed happened just over a year ago, and I haven’t yet regained the full use of my left hand, but I’m trying not to give up on it. I was in close to the same shape as your brother this time last year, as far as not being able to sit up or stand on my own, so I understand his frustration. If his recovery is like mine, he will regain the use of his legs before his arm. Just tell him not to give up! I hope his situation improves soon!

On the issue of tone, have they tried Botox injections yet? I’ve heard they’re very effective for tone issues.

Never give up. I am 5months into recovery and still doing therapy on an outpatient basis. The therapists are trained in número issues and direct therapy that way try looking up if rahit is the practice started by a núero guru and teacher . One of my pts said patients don’t plateau therapists do

My surgeon was always very positive when everyone else said I’d never regain certain functions, but I regained almost everything within the year after I had it. For the tone, they gave me Botox injections to loosen up my legs which really helped. Also, recovery takes a while for everyone, so he may just need more time. Are you in the Midwest? Because my rehab clinic was awesome in helping me recover. If you are, I’d suggest the Rehab institute of Chicago. They really helped me.

Wendy, I am surprised that the doctor said that he is as good as he will get. I was told by my neurosurgeons that I would continue to get better for two years after my brain surgery to remove my AVM and I DID get a lot better in those two years following my brain surgery, however, my brain surgeons ALSO told me that I probably wouldn't get much better beyond where I was two years after my brain surgery and they were DEAD WRONG! I am 11 years post-surgery and I CONTINUE TO GET BETTER, even today! I did not lose any physical functionality, my issues were more cognitive functions and high level executive functions, however, what I have learned since my brain surgery is that the brain continues to heal itself. I just read a wonderful book that is written my an AVM survivor: The book is called "My Stroke of Insight" and it shows how wonderfully this AVM survivor's brain healed itself after her AVM bleed and stroke: There are also many other books out there on this exact subject.... Please tell your brother to hang in there and NOT to give up hope! He is VERY, VERY early in his recovery!!! Keep positive and tell him to join this website when he is up to it... he will find a wealth of information here! Good luck :)

I only know what I have experienced. My husband had an AVM rupture on August 4, 2013. From what I have understood from SO MANY conversations -- recovery can take place for up to 8 years (read The Stroke of Insight!). Don't lose faith. It is slow (kind of like watch grass grow or paint dry), but it happens. The brain needs time, and also needs to be exercised like a muscle. Don't give up!

So much of what has been written here I can agree with. I’m going with my neurosurgeon. You are still medically healing from a bleed for at least a year, sometimes longer! He said we would be measuring recovery in years after a massive bleed, long coma, and a little over a year in recovery. There is research that suggests the theory of plateau has been debunked. My neurosurgeon has been 100% right all along. So I’m sticking w him! BUT, it is essential to stay w positive, creative problem solving therapists! A pediatric one might have ideas- find one if you want (they are in public schools) and see if they have some different ideas on addressing your brothers needs. Some therapists have a set of solns. People in pediatrics may think a little more out of the box and be less willing to ‘give up’ on a child. I wish you and your brother patience and perseverance!

Hi Wendy. What do you call the person who graduated last in their medical class…you call them Doctor. Grrrrrr!
The swelling in the brain has not even gone down in 4 months! I found improvements years after my bleed and subsequent surgery.
The 4Ps to recovery…Patience…Persistence…Positivity…Prayers!

I TOTALLY agree Barbara! :)

I was just going to suggest watching the documentary The Crash Reel when I saw someone started another discussion on it. It is a phenomenal movie about snowboarder Kevin Pearce. He sustained a devastating head injury while training for the Vancouver Olympics. What makes the movie so good is how it follows Kevin and his family through 2 years of rehab post injury. It is a real eye opener on setting realistic expectations for recovery following a brain injury. It also shows how a great team of doctors, support staff, therapists, family, and friends can come together to support a brain injured person in their recovery process.

I am sorry that the physical medicine doctor gave you news you did not want to hear. There is a fine line between giving a patient realistic expectations and squashing their fighting spirit! If you continue to feel that this particular doctor is not a good fit for your brother, then find a new one. In general I always felt like the therapists had a better fix on recovery processes than the surgeons since they are the ones who actually with the patients as they rehab. But staying with an overly negative doctor doesn't make sense! Maybe go back to the neurologist and ask them if there is any medical reason why your brother is not progressing as they had expected??

Your family and your brother have a long road ahead. Celebrate the baby steps! Keep a journal. It is hard to stay positive about progress when things are moving soooo slow. But if your brother can go back one month or two months and read about what he was working on then, he will be able to see the improvements.

Good luck to you!

Hi Wendy
I am just going to repeat what everyone else is saying as it so important, never look on the negative of how he will come back as he needs you to keep saying recovery will happen. I had the major bleed also and my wife was told I would not make but I did, yes it took me years to fully recover but again I did, I remember thinking if it hadn't happened within a couple of month then it wouldn't but my surgeon told me it would build over time possibly years.

I had my AVM when I was 44, ten years ago now, and thought I would never recover but my wife's push and recognition of my everyday achievements drove me back, I am now as I was before it happened and had the AVM removed.

Doctors DO know a lot, but they are not perfect.

My neurosurgeon, my neurologist and others told my I will recover for 12 years. However, since my medical mayhem was around 24 years ago, once in a while EVEN NOW, I STILL a gain here and there.

The bottom line in my eyes is that the 'Power From Within' can change any statistics!


4 months is very short amount of time compared to the degree of injury you describe. each doctor has different opinions and different people recover at different speeds.
when I entered rehab, there was someone there who couldn't walk or speak. he communicated by blinking. I left before him and don'r know how long he was there before me but I know he has learned to walk and talk again when docs said no way. recovery comes slowly and age/lifestyle affect recovery. If he was generally healthy before. should be a little quicker than if not. My doc told me it is also mental, if you think you're as good as it gets,thats what you will get. you have to WANT to get better and that's difficult and that's where family and friends come in. Keep conversatiobs and visits light,fun,etc. alsp celebrate small achievements

I agree that 4 months is not long in the grand scheme of things. I think the best advice we recieved was to not compare yourself to before the bleed, but to right after. Focus on whats been gained, not what’s lost. I would imagine there will still be lots of gains for your brother. My husbands bleed was a year and a half ago and his surgery a year ago…he’s come a long way and improves even more all the time.

what can I cay that wasnt said already...the brain: that mysterious and very complex organ. Not even doctor's know it perfectly. Much less that person. What all my doctor's always said was: "We do not know how much recovery you will have or how long it will take; everybody is different". Because noone knows,the best thing is to never give up. Only thing certain is that if you give up then the gain will be limited. So encourage your brother to keep on going. He's still VERY early on. His best recovery is still occurring.

My AVM rupture was 9 1/2 years ago and I'm still a work in progress. I was told that where I was would more than likely be where I would be and that improvements in memory were'nt likely. I'm lucky that I have no physical problems but initially had left-sided paralysis. After 7 months of intense physical and occupataional therapy I was discharged. I will pray for your family and your brother that the doctors are wrong. He needs to stay positive and to NEVER give up on his recovery.

Good luck and God Bless.

Karen Z.

Hi Wendy,
I will pray for you, your brother, and family!
The brain is amazing- always finding new ways to make meaningful connections. Keep encouraging him!
My 17 year old daughter had an avm rupture in July, 2013. Her surgery was on July 4. Doctors told us the 6 month mark is a “good indicator” of most recovery/capability. Although I would place her at about 95% full recovery, it has been slow and steady. She was in a live in program for a few weeks, then physical and cognitive therapy full time (5 days a week, 6 hours a day), for 6 weeks. She has been released from physical therapy completely, but goes to the gym in her own for exercise now- and continued strengthening of her right side (firmer dominant side, but rupture on left side if brain caused issues). She still sees speech therapist occasionally for processing/ output / cognitive improvement. We just had her 6 month anniversary a couple of days ago.
Hang in there! These are life changing events!!! I hope for the best!!!

Again, (I posted earlier in this discussion), I DO think that being older when your bleed/surgery happens DOES have a significant impact on the swiftness of one's recovery from this type of brain surgery. However, I am 11 years along since my craniotomy and I am STILL enjoying improvements in my cognitive and high level executive functions and I'm 54 years old :) But, for the younger people in this discussion, I think you have every reason to believe that you can get EVERYTHING back if you really push yourselves! I think "attitude" and "perseverance" is a big part of the equation too! :)

Thanks it is good to have reinforcement to help stay positive.