Please discuss the extent of your recovery after AVM surgery. "After surgery I was -----, but now I have recovered ---- functions."

My niece recently had a bleed, embolization and then surgery to remove/clip an AVM in her right frontal lobe. After several days, she was awakened from her medically induced coma. It is now two weeks after her surgery and she still has significant confusion and is paralyzed on her left side. She is in a rehab center now and it would be helpful to know the details of others recovery after AVM surgery. After reading many narratives, it appears that not many of AVM survivors had left side paralysis. Vera and Elle have posts that discuss paralysis, but they seem to be the exceptions rather than the rule. Others state in their narratives that their recovery was difficult but don't actually state: I was X after the surgery, (i.e. paralyzed, confused, memory loss, angry, depressed, etc.) but, after a stated period of time (e.g. 6 months, 1 year, etc.), I was recovered to a particular extent. (e.g. walking with a limp, able to return to school, etc.). Please offer help to others who know that all AVM survivors recover differently, by discussing the extent of your disability after surgery and comparing it with your situation after rehab. Thanks.

Hi Meg,

Two weeks is no time at all in brain-injury time, and you have to remember that a bleed plus a surgery is a double injury. Her brain has a lot of reorganizing to do, and it's going to take time. After doctors decide that recovery is complete, brain-injured people have noticed further improvements in themselves up to 10 years after the injury.

My husband's bleed and surgery resulted in a coma (natural, not induced) plus paralysis, and he went on to be able to bike, run, and get an advanced degree. I don't want to go into the timelines, since in my experience comparisons can be more stressful than helpful. Every person's situation is different, like you said, so this is just to say that the window on further recovery is wide open.

Glad you found the site!

Hi Meg!! This is a great idea because you are right...every recovery is different!! I suffered a bleed as well so I think alot of the damage was caused by the bleed-not the surgery. For about 3 months I survived on KoolAid and dry Fruit Loops because everything else made me sick. I had double vision for about 2 months then I slowly started to recover. The muscle in my neck had been seperated in order to perform the surgery so my head was like a newborn. I wore a brace for about 4 months. I fell over frequently and had to "make" my feet and legs walk. That lasted for about 9 months. Most of these things have recovered (or they became my new normal)except for the dizziness and naseau. Most of the time it very controllable however there are bad days. It is hard to tell how much of this has just become my new normal since my surgery was in 2000. Hope this helps...hope your niece responds well to rehab!!

Hi Meg. I know it must seem like an eternity but the brain heals SLOWLY!! As JH mentioned 2 weeks is nothing. I did a search for you…
My bleed affected the whole left side of my body. I did make a full recovery. However, I have to tell you that every brain is different and so every recovery is different.
The key to her recovery will be rehab asap and her determination to get well! Oh and a good family support system!

Like Barbara said, early intensive rehab is key. After my bleed/surgery my biggest obstacle was muscle atrophy after 3 weeks in a coma. I was too weak to even hold my head up. My short term memory was non-existent, I couldn't swallow very well (I was surviving on Ensure but avoided a feeding tube). I lost vision on the left side, both eyes. Once I was alert and coherent enough, which was about 2 weeks after surgery, I started rehab. After a week in rehab I was able to swallow enough that the nurses didn't have to stand next to me when I ate. After about 2 weeks I was walking, with assistance. After 3 I was walking unassisted. My short term memory has improved so much. I still do forget some things, but it's not everything like it was right after surgery. My vision has not improved and it probably won't at this point, almost 4 years after. And like JH said, 2 weeks really is nothing in terms of recovery from brain trauma. The brain has an amazing ability to heal itself, but it takes time. I wish your niece well in rehab.

Hi Meg,

I’m in my second month after surgery? My AVM was in my brain stem. I had to relearn to walk. My right side was affected. My face on the right side is paralyzed. My leg and arm are not but they don’t cooperated with me completely, I can’t write very well and my walking is very unbalanced. I had major nausea and vomiting afterwards which was helped by meds. I looked like a monster because my one eye would not shut and is always red. The eye was larger than the other. I lost all hearing on my right side. The worst of all is the fatigue. My vision was also double.

I have been seeing an occupational therapist, physio and speech therapist for these two months. I must say that the vision exercises have helped a lot. I recently started seeing an acupuncturist. This has helped all my symptoms so so much. Very noticeably my energy levels. Since I have been seeing her the muscles in my face have relaxed a bit and I am also walking better. I have only been to her 5 times. It’s worth a try.

2 months is even early, but I am starting to feel human again. Expect your niece to have really bad tearfull days. It’s very sad not to be who you once were. I was okay in the beginning but recently it has hit me hard and I get quite frustrated with myself. This is all to be expected. But with you and her family she will get through this rough time. Good luck to all of you, it’s not easy but you will all get through it.

Hi Meg,

As JH pointed out every person's recovery is different. You probably realized that now after reading all the replies to your posting.

I had a bleed and a craniotomy as a teenager. My AVM is located in the left frontal lobe and as result of the bleed my right side was completely paralyzed and I couldn't speak. After 3 weeks of coma I went to rehab for about 6 months. In rehab I had intensive physical therapy, occupational therapy, and speech therapy. Barbara mentioned that the key to her recovery was intensive and immediate rehab and I agree with her. Rehab was one of the most important factors in my almost complete recovery. After a week in rehab I could start moving my fingers, after 2 weeks I started to utter words. I had most difficulty with walking. Walking was still problematic when I left rehab. For that reason I went to the gym. I also biked a lot in order to strengthen my leg muscles. In the end all went well. I went to college and I'm finishing my Ph.D. now.

I wish your niece good luck with her recovery.

In May 2011, I had an dural av fistula on the top left side of my brain (dural meaning lining over the brain). My AVM resulted in me having a stroke. They performed surgery to fix the AVM by inserting Onyx glue via my femoral artery.

After surgery I was confused, paralyzed on the left side of my face, couldn’t close my left eye, couldn’t control my left eye movements, left hand was curled up like a claw, right leg was weak and limpy, and I couldn’t speak.

But now I can speak (with slight aphasia), drive, walk normally, use my left and right hands normally, and smile. The left side of my face is no longer paralyzed. The only problem I have is that my left eye cries. Not all the time but sometimes. I am seeking acupuncture to correct this.

Don’t be discouraged. It is far too early in your niece’s recovery process to see results. The Dr told my mother, “don’t expect her to ever speak again, she had a really bad bleed”. You may find comfort in the book, "My Stroke of Insight: a brain… By Jill Bolte Taylor. It’s about her recovery process and the things that you should do to respect the patient. The key to a brain injury is rest. The brain is an amazing organ — it can make amazing progress.

I wish your niece a full recovery. Keep us posted on her results.

I should have said the key to a brain injury is rest and lots of rehab. The rehab made me really tired but it is a necessessity. I used to immediately go to bed after going to rehab while in the rehab hospital.

Hi meg,
As JH & others have said, two weeks is no time at all in brain-injury time, as well as we're all different in our recoveries.
I have multiple cavernous malformations, CM's (in same family as AVM) & have had 4 surgeries & all recoveries were different.
My most difficult recovery was after my thalamic surgery (near brainstem) almost 2 yrs ago. The CM had been bleeding A LOT & was more involved in my brain than previously thought. After my 1 1/2 week hospital stay, I spent 2 weeks in neuro rehab relearning to walk & do basic tasks independantly. My entire left side is numb (hemiparesis), along with hypersensitivity & thalamic pain (clothes, gentle touch, movement, etc. hurts - OUCH!) Upon awakening from surgery I had double vision, but it has improved on it's own & while my vision is not 'right,' I've learned to adapt. It's not been an easy 2 yrs! ;)
Personally, I feel that location of a bleed/surgery makes a difference on recovery, as well as age. I'm 52 & have had multiple insults to my brain. While I don't consider 52 to be 'old,' had I of been much younger with less brain insults, I suspect my 4th surgery & ongoing recovery may have been less challenging???
Rehab was one of the hardest jobs I've ever had, but very worthwhile.
Wishing you & your niece all the best!

Great question! I am always eager to share my information so that others may learn. My surgery was 11 yrs ago. After surgery I was weaker on my right side, so I started using my left hand for things. But I was not paralyzed. I did experience slight confusion and memory loss. I still do not rember people I went to high school with or some from college. But that has gotten better. I was not depressed or angry but I had sheer motivation and determination. I was in an inpatient rehab 2weeks after the surgery. I was in outpatient rehab 9 months after the surgery. I went back to college 3 months after the surgery and continued my outpatient rehab as well as my schooling. I did not drive until about a year after my surgery and had to take a drivers evaluation performed by an OT before I got my liscence back. I experienced balance issues and vision issues after the surgery that are still present today as well as fatigue. Balance is much better than it was, however I have had 11 years to work on it. Vision is also much better than it was. For the most part I do not have double vision during the day unless I glance to the side without turning my head. But when I get tired or drive too long I get double vision. Recovery is an ongoing process. Don’t think short term. I am always striving to find something else that improve myself. And explore a wide array of disciplines to see what each kind of practitioner has to offer. There is a lot to be said for body work and more eastern approaches to medicine. I do not walk with any assistive device, however I wear flat shoes and no heels. I prefer using handrails when walking up and down stairs. And I do not like to carry things upstairs unless I can see my feet. <–it’s a compensation. I did graduate college with a degree and have been working for 7 yrs now. I find that 32 hrs a week is better for me versus a 40 wk.

Earlier I replied as an AVM survivor. Now I will give you my occupational therapy advice. Be Patient. This is the brain that we are talking about. From the day we are born we are learning new things such as how to crawl, walk, run, pedal a bike and stand on one leg. My guess that your niece has already learned and mastered these things. I am not sure how old she is, but I can tell you that the previous things were not learned in a day. You niece had surgery. Her skull was opened and brain matter was touched by the human hand. In short it will take the brain time to heal from this procedure, not just the AVM. Things will return, she will experience deficits, but above all continue to strive for the best and stay positive even though it will be hard. Having a positive attitude toward things will Produce positive results. You are in my prayers.

I think everybody is effected differently depending on the location of the AVM, size, Dr etc etc...All you can do is be positive, strong & keep faith in God...God Bless and hope everything works out for you and your niece

i've noticed the same, that not many ppl seem to b horribly affected by an avm bleed which has made me feel sort of left out, even on a survivors network. my avm was also in my right temporal lobe. my speech was barely affected but i am hemi-paretic. i am incredibly emotional now, i get confused easily, high-anxiety, instant rage (lol). i have a very short memory/attention span now. i am very depressed but i have a good support system--my husband and kids. my crani was may 2, 2011. my bleed was march 6, 2011. as of now, i use a quad cane but i dont go to therapy due to lack of insurance. my left arm has become this---emotion window. i cant hide anything because of it. if i get tense, scared, angry (anything intense) it pops out, gets stuck in doorways a lot. my leg, when the weather is turning, my toes curl up, when i am scared or angry, my knee will not bend for anything. i use an AFO because i cant move my ankle, prevents my foot from flopping i guess, i dont know. i had to quit school because i no longer have the ability to multi-task--like taking notes while reading or during a lecture. i cant even walk and talk, i have to stop and talk, i cant risk losing the little bit of focus it takes to form words. my surgery was like 9 months ago, my lack of gains is 100% my fault. i have lost focus, motivation, drive. no matter what other ppls stories may b, u need to remember those things will always make ur story/recovery different, most likely better. maintain the motivation and drive, stay strong and focused.

It has been almost 13 years, since my last surgery, I had 3 craniotomy, 2 for aneurysm's and 1 for AVM and I found a support group which extremely helpful. My experience, and that of others, is that you cannot measure your recovery in weeks, but rather in months 12-24 to be more precise. You have to think in terms, of having injured your brain, and that takes a long time to heal.
BUT IT DOES HEAL. In a few months you can look back to see how much progress you have made. If your honest with yourself, you will notice some improvement, which is exponential the further we are from the incident.

My second bleed, intensive care for 7 days in a coma, came out and could only speak one word, if i was lucky. Took me many, many years to have comfortance back; i still cant read that well, plus i suffer from aphasai - but i have managed to bring back about 85% back. Took me maybe 5 years to really be happy about my communication skills.

Thank you so much for your thoughtfulness in giving honest--and I am sure difficult--responses to my question. I forwarded them to my brother and sister-in-law and they found them extremely helpful. They provided some explanation for symptoms they observed that the therapists could not explain. They recently learned that my niece will be able to go home--in a wheelchair--on February 28, six weeks after her bleed and surgery. She will continue to receive outpatient therapy with the goal of walking with assistance at one year. She is able to read and communicate, with residual confusion. Please continue to provide responses if you can, as they are helpful and hopeful.

After my third craniotomy (avm) I felt very confused. I'll use this as an example. I had an appt. to see my surgeon, I got on elevator got off on wrong floor,and didn't know what to do. I was perplexed.
A nurse saw my confussion, and simply stated why don't you look at the list of dept. w/ floors, outside of elevator. Sounds simple, but I couldn't figure that out on my own.
Anxiety is still a major problem, large gatherings, can be an issue, however I was able to go back to work, and be somewhat productive.
I do however still question my judgement, in many situations.

1 Like

It was 19 weeks yesterday when my 38 year old husband had a massive bleed, he has an AVM on his brainstem. Before his bleed he was a fitness fanatic, ate healthly and done alot of weight training. When the bleed decided to erupt, we were told he was dying (exact words off docs) and if by a miracle he did survive he would be severely brain damaged with no quality of life. He was in a coma for 10 days in ICU for 3 weeks then onto a ward for 7 week and now he has been in rehabilitation for 8 weeks with a discharge date of June. This is unbelievably hard for us, we have 4 children but especially hard for my husband as he cannot walk, his right side is very weak, he has very poor vision, short term memory loss, confusion, short attention span, muscle weakness in his chest which results in him breathing quickly all the time, but every single day he makes small progress, even if its just remembering the nurses name again. The damn AVM is still active with gamma knife on the horizon hopefully soon. To us my husband is progressing really well, the healing process continues for years. The doctors have said he will never be the same person ever again because of the extent of the bleed, my head has accepted this but my heart cannot. Stay strong, i hope everything works out good for your niece, God bless

After surgery, I was pretty much a mess, but now I am much less of a mess and able to do much more.