I was curious about recovery time. I have read that the most recovery occurs in the first six months following craniectomy. After that the amount of recovery is limited, plateaus or eventually stops by the two year marker. I am aware that each individual is different but I am curious about your experiences. What was the process like for those of you that had an AVM in the brain? Do you still see advancements in your recovery even if it has been years later?
My son had his AVM removed in March. He is sixteen and was very athletic before this surgery. He is still very strong. He has made astounding progress in therapy and I feel like he is doing remarkably well.
Every since I have found out these statistics on healing I have felt like the clock is ticking. I have been marking days on the calendar and feel like I have to cram as much therapy into his days as I can in order for him to have optimal results. He participates in outpatient therapy (PT,OT,ST, RecT) two to three days out of the week and starts vision therapy one day a week next week. I do therapy with him at the house on his off days. Some days are lighter than others depending on how he is feeling.
I am wondering how much therapy on average you have done, both outpatient and home therapy? I am trying to gauge what I need to be doing for my son and if I am doing enough.
Thanks so much for your feedback.
Hi AJ's Mombre!
I was told by my neurologist that most of the recovery would occur in the first year but that it could continue for up to 5 years. My craniotomy was 10 years ago so I'm sure the thinking has changed over time.
For myself, my AVM hemorrhage affected my left side from the mid-thigh all the way down on the outside of my leg and my foot was the most affected. By far, the biggest changes happened in the first year. It was funny---I remember realizing that tiny little patches between my toes were feeling again. At this point, 10 years later, my numbness runs from the middle of my calf to my foot.
I didn't do any therapy.
I hope this helps and I wish you and your son the absolute best!!
I had a cranal AVM surgically removed about 3 months after diagnosis and spent 10 days in the ICU. I walked out of the hospital essentially unscathed, but did spent another 4 - 6 weeks basically just laying on the couch. I probably could have worked during that time, but I was on summer break from college & my parents told me to do nothing, so I did. I returned to college after that rest period in completely normal form.
Yada yada, I lost some vision but improved for 6 months or 1 year. I did not track it carefully. I'm not sure if that's any insight, but that was my experience.
Hi there, the best advise I can give is to not set dates on recovery, everyone recovers at different rates, I myself am 8 months post op I made a remarkable recover to start off with but have now plateaued, I do set myself targets each week that are easy for me to achieve so I can feel like I have accomplished something even on my bad weeks. I am still having physio and support from the O.T. and neuro doctor I am also seeing an eye specialist to try and deal with my dizziness and double vision. most will tell you recovery is made within the first 2 years but that really is not the cut off point you can still improve after that deadline ( just like you could learn a new language) your son will be the best adviser to what he needs sometimes others can be a little over protective and that can actually hold back the recovery, give him the space to do things himself and if he is finding it difficult thats when you can step in. any thing he can do himself will give him that little bit of hope and let him know he is getting better and will do wonders for his self esteem. I hope this is of some help like I said everyone is different and this is just my personal opinion. wishing your son a speedy recovery and well done you for taking the time to find out what is best for him and for standing by him, it takes alot and may be a long road but you both will get there xxx
hi there i am curently in rehbiltation, doing physio, ot and phsyc, my avm ruptured 8 weeks ago 9 weeks on tuesday, your son sounds very strong, as i am apparently, i wa very close to deah but pulled through, i m still recovring but have made a huge amount of progress, i am able to wwalk frely as i couldnt feel my lft sde wen i woke up from the coma but the feeling came bak 3weeks after, im not sure about your son but i had a trachiostomy, and i rapidly improved once that was taken out. i am still awaituing a date to hv my bone flap replaced :( has your sonn had his replaced? if so how long sdid he have to wait?
answer to your question its good to have alot of physio but its even more important to have rest to heal
if your son needs to talk to someone, it wouold be great to soialize with ssomeone who is/ has gone through the same im sure it would help him alot also. i am 19 and from the UK
I was in patient therapy for about 2 weeks and then about a month of out patient therapy twice a week and about 4 months later about 1 a week for two months.....however I got a trainer at the gym and have felt that weight lifting and exercising did much more for me then therapy ever did. I continued to train with my trainer once/twice a week for about three years....higly reccommend you get your son involved in a little of that.....
THE 6 MONTH TO 1 YEAR TIME FRAME IS WAAY OUTDATED; DON'T BELIEVE IT. MY THERAPIST ASSURES ME THAT THE BRAIN CONTINUES TO MAKE RECOVERY AS LONG AS IT IS GIVEN CHALLENGE! Some survivors estimate about 10 years of healing time. An inspirational woman whom I met had an AVM bleed and craniotomy at age 15, took 10 years to regain all the function that she'd lost on her left side and ran a marathon two years ago. Please be encouraged that recovery has no time limit. My neuro-surgeon...considered one of the best on the upper East Coast said to me regarding recovery, "The sky is the limit. Prove me right!"
My AVM bleed and emergency surgery was January 13 2004. I'm still doing OT at a clinic once two weeks. I althernate between clinic sessions and pool therapy sessions. I do PT at home 6 dats per week. I do my OT at home 6 days per week as well(when I don't see the therapist). I lease the neuromove machine to regain finger extension and use it 6 or 7 days per week. I am still working on the function of my arm and ankle as my left arm, hand and leg are still spastic. but they've improved dramatically!
I go to neurobiofeedback once per month. This is an amazing and less commonly known therapy. I urge you to find a practitioner in your area as its greatly reduced my spasticity. My therapist said that most of her patients continue until their spasticity is gone. At that point they've regained function of their limbs! One of her success stories is her mom who had a stroke and fully recovered in her seventies!
I spent 3 years in vision therapy. I ended in in 2007. When I began, my visual spacial processing skills were so poor that I couldn't stand in the middle of the empty clinic alon; I had no frame of reference and became very scared. I used psyntonics to recover as much [erriphral vision as possible. I still lost the entire left half of vision in each eye. That has been explained to me as the one thing thast cannot return. Fortunately it can be compensated for by turning my head and I do drive!
I was 25 at the time of my injury. So, I am young and recovery odds are higher just like with your son! Best of luck and don't listen to any negativity!
I think there are multiple parts to your question and answers. And I agree, everyone is different. "Recovery" for a 16 yr old is generally gonna be much better than for a 40 or 60 yr old.
When you think of muscle and nerve stuff, then I think the six month window is more appropriate. What I'd heard is the any recovery to muscle/nerve stuff during the first six months will be the easiest. It gets much harder to make significant recovery after six months.
So I would encourage you to do all the PT, OT, whatever you can early on. When he plateaus and insurance stops paying, I suggest you go to a really knowledgeable personal trainer. Not just a buff body, but someone that knows the muscle and body. Let the trainer see what any limitations are, and allow the trainer to see his med records from the PT/OTs so he will know which muscles will not work at all, and which are still possibilities.
We did that with my wife, who had significant leg damage (nerve/muscles) from an embo. Our trainer read the PT reports, knew which muscles would never work, and developed a workout plan that strengthened 'good' muscles to compensate for the 'dead' ones. Did a world of good for her!
At 16, if he doesn't know it yet, might be good to share with AJ why you are pushing him so hard. If he can do as much as he can now, that's really good. And the other thing, at 16, think how many medical advances there will be by the time he's 40!
Best wishes to both of you.
Ron mentions a good point. Significant improvement is easier early on...after that the huge changes take much more work. i was always an athlete so have the motivation and stamina for the work needed! I bet that is the case for your son...considering his age!
Also, I do a lot in the gym so I think that the suggestion of a personal trainer is a very good one!
Hey AJ Mombre
I had my craniotomy 5 months after my bleed on my left temporal lobe. I tend to look at two different recoveries.
After the bleed, I had some pretty intense speech therapy, that went of for a couple of months of 3 -4 hours a day, and that was the maximum he would let me do. The speech therapist had always said 'I can only take you so far - the rest is up to you'. So, I try to keep my brain busy - even if it's crosswords, sudoku etc. The bleed was 18 months ago, and I still have speech issues, but not too bad - I still hold my job down and it doesn't affect life too badly, it's just case of "think before you speak". In my case it seems that the speech cannot keep up with the my thoughts.
After the craniotomy, the physical recovery was better than i expected. I was home after 5 days, and back at work after a month. I'm fairly healthy - I run a bit, but I'm not an athlete.
Good luck to your son -
Well, we cant say its out dated. However, it depends the amount of therapy and plain ol’ activity you engage him in. A week after my crainiotomy i had a birthday party i had friends over and i started school in sertember. I wasnt 100% in fact i wasnt even 20% better. But aling with my parents i was determined to bring my brain up to speed. Show him pictures show him movies. Deoending on his side effects recovery time will be different. Soeak with an occupational therapist for more “scientific” type tests. Babying him will NOT make the healing process easy or effective.
First, I'm no expert and can only speak of my experience. Second, my specific need for multiple crainiotomies was due to a CCM and not an AVM, but almost any disruption to the brain involve similar issues in terms of location of the surgery. Finally, most of you know the basic difference between an AVM and a CCM, one being associated w/ a vein and the other associated w/ just a 'blank' area w/in the brain.
My CCM was removed from deep w/in the right frontal lobe, deemed the executive function section of the brain. Of these executive functions is the ability to control emotions, your personality, short-term memory, and inhibitions, among others.
My initial surgery was extremely straight-forward and upon waking in ICU, was assisting my son in his Algebra homework. I made excellent prograss mentally from this surgery, but was never able to eliminate the excrutiating headaches/migraines or the ability to keep foods down. Upon discharge, I continued on this progress at home, along w/ significant decreases in mental degredation, and after ten days was back in the hospital.
This second admission resulted in the location of a significant infection w/in the original surgery tract and the need for a f/u surgery. This second surgery began the path of noticing deficits that were significant tremors of both hands and the inability to perform simple tasks.
Being a driven and highly responsible person, I immediately began working on my own recovery that involved forcing myself to perform simple tasks involving walking and thoughts (due mainly from having a working knowledge of various human body systems and their interworkings or functions in the big picture - no I'm not a doctor, just someone that works w/in the medical field repair medical equipment - requiring said knowledge). Needless to say, I was not able to perform the simpliest of child games - Uno; took over five minutes on my first move and still couldn't complete the process! It was at this point that my wife knew there would be a long recovery period, unfortunately I wasn't of the same conclusion - I thought I was okay.
To continue along this process, once I was had the infection removed (three months of IV antibiotics through a PICC line - placed into the left bicep) I was cleared for work. Of course, due to the infection, my original skull plate had to be discarded where during the irratication period the opening remained, giving direct access to my brain. After the infection was deemed gone, I was cleared for work. I immediately went full speed at my regular routine as I was biting at the bit during the antibiotic period.
Due to this pushing, however, caused its own set of setbacks. These setbacks involved, but were not limited to difficulty finding the right words during conversations, remembering dates, times, events, etc.
After the detailed building process involved w/ the prosthetic plate, there was one final surgery approximately three months after returning to work (which only lasted about a month - ensuring my employer that I was committed to returning and still among prime functioning status - a huge goal of mine). After the plate insertion, however, there were even more deficits that included significant shaking of both hands. As my job required fine motor skills and control of my hands, this was a heavy blow and made the recovery period more difficult.
Fast forward to just under two years since my initial surgery and being in a very relaxed and enjoyable environment (dinner w/ friends at a local resturaunt), I suffered a grand mal seizure that placed me in a life-threatening situation and on a ventilator for just under three days. Once returning home and prior to returning to work (was on vacation when this occurred), I suffered another mild seizure that placed me out of work for six months (NYS laws prevent driving for a minimum of six months - like most states). After this period of resting, I was able to return to full working ability w/ the afformentioned deficits.
So, w/ giving you this background on my own recovery, it will help you better understand where I'm coming from. Now, on to what the general recovery brings. Every surgery and non-surgery patient will experience varying levels of fatigue, this is completely normal, should be allowed to occur and encouraged, but not to the point of demanding. Learn the subtle clues w/ your son that will prompt you to gently ask if they are tired, but not to the stage of being annoying or getting him overly frustrated/angry at your prompting.
Also, they may be slower at doing things and slip into a depressive state due to their not being able to function to their full abilities prior to the injury/surgery. Try not to dwell on these points and seek out and encourage professional assistance in these subjects. Remind everyone involved there is NO shame in getting an expert involved to continue the healing process, this is a life-long effort and never ends. The brain is one of the most complex and least understood organs in the human body and there is no steadfast rule when it comes to recovery.
Finally, the best thing everyone can do that surrounds your son is to be there for him to assist in doing various tasks w/ him and not for him. If there are obvious things he cannot do at this time, do not give up or let him give up. Provide gently prodding to get him to continue working at one or two items on a regular basis and keep adding to this when he is successful.
With time and committment, his recovery can be significant over the long haul. As you mentioned, no two people are the same and the recovery period can take a long time. There needs to be understanding on the caregivers part to commit the time and encouragement to help in the entire process. Additionally, everyone must be accepting of the new person that is created out of the AVM, this includes your son. This is most likely the item that will take the most amount of time, but once it occurs there will be even more progress and a renewed sense of the efforts that have occurred and the drive it will take to continue the process.
I apologize for this being long, but hope it has helped you understand that the six-month recovery periods may be a rule-of-thumb, they are in no way where you should limit your or his efforts. Being positive for him and you may be difficult early on, but it will only make things better and help the acceptance occur earlier. I cannot stress it enough to involve professional help as early as possible, especially one that has specific training and education for brain injured people. This will help your son open up and continue his healing. Also, don't forget about your own healing and the ability to support him and yourselves. If you are too drained, you cannot provide what is necessary for him.
Keep looking for answers, they are out there.
It has only been four years in my recovery, I'm not fully recovered
First i hope your son continues to recover and recover well. I had my avm removed 3 years ago. I have been an athlete all my life. I played college basketball and have been in martial arts since i was 8. I still am involved in martial arts as i now teach.
My avm was in the front left part of my brain. Dr said because of my age(31 at time), location of avm, and my health that i had a good shot to beat this thing and recover.
I went through 2 angiograms 4 ambulizations and finally a cranotomy. All together i was in hospital 3 1/2 months.
You will hear different feedback, and im sure all will provide valuable feedback. Everybody is different. I would like to add the mental aspect of recovery as well as physical. I dont hear that discussed as much. I used breathing, meditating, and possitive energy support as much as any physical aspect.
I can even control my blood pressure till this day with breathing. Your son needs to remain calm through this and through recovery.
I was out of hospital before thanksgiving and was back training lightly in feb. I used the pool and my martial arts to recover.
My doc said the key to revovery was to get back to my “routine” whatever that was for me. Mine was martial arts, work, and being around my family and friends.
It will be 3 years this oct since my cranotomy and i have never been healthier or happier!
Your sons recovery depends on him gettting back to “his” routine. However that may be. He seems to have the support he needs. The rest is up to him and his attitude and spirit.
All the best to you and your son sir
Hello! This is such an interesting subject for me... I had a fairly large AVM in my brain that was discovered only after it ruptured when I was 43. I had two embolizations prior to my craniotomy in 2003. My doc told me I should hopefully be back to "normal" after two years because the brain will continue to "heal" for that long. Well... let me tell you, in my case, I was still a total mess after 2 years (mostly short-term memory and my ability to visualize in my brain). I was told I wasn't going to get much better and all I can say is: In my case, they were 100% "wrong" :O) I have continued to get better, and to this day, I am STILL improving - almost 10 years since my craniotomy!
For me, I have found that it is important for me to "push" myself and not to set limitations on myself... I used to depend on notes and writing things down all the time... now, I find that I don't have to do that as much. I still do have problems "remembering" where I parked my car or trying to visualize where I "came in" at a large mall, but I have learned that if I continually repeat where I'm parked (to myself) or where I entered a mall location at... it helps me a lot.
I'm 53 years old, and I find that many of the issues I still have are probably more "age related" rather than "brain injury related". I continually push myself and that really seems to help me. I have recently started reading books again too... whereas, for a very long time, I had a very difficult time doing so...
Good luck to you and your son!
First of all, I want to send my wishes for the best possible recovery, having said that, my wife, parents, and I all researched recovery times, it is kinda like a young child saying, “how tall am I going to be when I grow up”? No one could definitively answer that question, and from my experience no doctor will ever answer that question. It all depends on the severity of the avm, time to discovery, speed of surgery, skill of medical staff, and personal drive. I had my AVM rupture six years ago this month and still experience little victories every week. My parents, wife, and I all had the same idea as you,“get this recovery right, you only have one chance.” In the first months, big changes happen quickly.
settle in for the marathon, in my opinion lose the calander, you won’t forget the day. I celebrate mine annually. All the doctors say two years… I did PT, and OT, three times per week for four years. I did speech therapy for one year, went back to college, Graduated with two master’s degrees and a 3.9 GPA, and still have some cognitive problems today. Physically, I was very athletic. I was 33 at the time of my AVM, I waterskied four days per week, owned a business, and loved life. physically my recovery has not been as good as my cognitive recovery. I have virtually no useof my left arm, and foot drop on my left foot.
Today things are just different. I cannot tell you what will happen with your son, but it sounds good to me that you are looking out for his recovery!
This AVM experience is life changing, but not life ending for your son, or myself. Embrace the opportunity that you have in font of you, support his recovery, and allow him to direct the process. I can understand your sense of urgency, keep up the good work, and remember that rest is very important for brain injury recovery. I still nap daily. The recovery will happen as quickly as it can, it will seem like it is taking forever, but after the “recovery sprint” that you are in , you will notice little changes for years. Those are what I call little victories. I had a team of therapists that I really enjoyed, and are still friends with today!
Best of luck and best wishes, PM me if you need anything!
Never underestimate the strengths of a person with a lost ability.
My AVM was removed in 1959, over 50 years ago. I lost a great deal of vision, and that did not get better. Otherwise, I am fine but sometimes goofy, I held a good job as a paralegal in a state government for a long time. I got married, have a son, although my husband passed away 15 years ago. I now live alone in Florida,
it's a miracle that I am alive, and I know that.
Hello AJ's Mombre,
Kuddos to you for being a proactive advocate in your our son's recovery. As a nurse and having Having survived a ruptured right hemisphere AVM ten yrs ago (I was 30yrs old), my therapy was minimal (OT & ST) and individualized to my deficits and needs. You didn't mention your son's deficits but the therapists have goals and experience and should be a good resources for you.
Recovery times are very individualized and are dependent on duration and quality of therapy, medications, and amount of rest & recovery between sessions. Your son's age (assuming he's taken good care of his body) may increase his recovery but recovering brains also need exercise, quality sleep, and good nutrition. I began physically exercising (to increase cerebral blood flow), gradually increasing my endurance and that significantly helped reduce my visual symptoms and cognitive skills, but it also completely wiped me out. I think I quit napping after a year or two. I continued to notice improvements 6-8yrs, and one uncomplicated pregnancy, later.
Hope this information helps you and your son.
I had a full crainotomy 18 years ago for AVM, it took about two years until I really felt almost normal again...but I continuted to get better, stronger, smarter, and even went to nursing school and graduated with my BSN, RN & PHN. He will be ok- everyone is diffrent and recovery is diffrent for each individual, but he will be perfect and able to do what he wants. Don't worry be supportive.
Hi AJ's mombre',
I have multiple cavernous malformations (in same vascular malformation 'family' as AVM) & have had 4 surgeries. All 4 recoveries have been different, but fatigue & cognitive issues has been a given with them all. Stress (good or bad) & lack of sleep wipes me out.
Less eloquent locations have been smoother recoveries. My 4th bleed & surgery of 3/9/10 was deep in my brain (right thalamus - located on top of brain stem) & recovery has been very difficult & ongoing. Thalamic post-op required in-patient neuro rehab to relearn to walk, as well as out-pt. rehab PT to help re-gain strength.
Best wishes on your son's recovery & know we'll be here to cheer you both on! :)