Recovery stories, please

I had an avm ruptureon July 6,2017i had a craniotctomyand had my avm remove d because the bleed was in the right side of the brain. I have left side hemiparesis to recover from thatI’ve been in rehab for about 12weeks . But I’m still unable to walk or move my left arm and hand. I was just curious and want Ed to learn of recovery of people in the same situation as me.i would like to knowhow long it will take to get walking again.
Any response s regarding this are appreciated



First I’d like to welcome you to the site. It is great you found us and I hope some folk can help you along the way.

I’m very fortunate not to have had a bleed from my AVM but what I believe, from reading other’s posts is that recovery from a bleed is often a VERY long process. So, I wish you all the best. I wish you determination to succeed. And I need to urge you to impatience (to get better) but patience to wait and endure because it will take a long time.

I hope others will offer you their recovery stories, as you asked.

Thanks for joining the group and I hope we can support you through your recovery. Very best wishes for the new year,



Hi welcome!! I had my rupture (1st one in April 2017 then 2nd one in August 2017) I also had a craniotomy getting my avm removed and a shunt placed. Im 4 months into recovery almost 5 on the 15th. I understand your frustration, you have no idea how much I cried and wished I wouldn’t have made it. Its pretty tough especially since Im a young mom. I cant carry my 1 year old son but now I walk with my platform walker. It got to the point I couldnt pee or go # 2 and had everything done for me. Im still in OT and PT but it slowly gets a bit more tolerable as time passes… I hope to upgrade to a normal walker or cane soon :crossed_fingers:Im the least patient person ever but we have no choice, now do we? So chin up :slight_smile: my arm has moved up and down under my control but clumsy and leg moves now too. I can stand for like 30 seconds unassisted and transfer on my own and sit up and walking with my platform walker like 100 feet I think :thinking: I dont know the exact # Im a tough cookie though if my therapist give me so many reps to do at home I at least do twice that amount. My baclofen has certainly helped too I would get clonus (sp?) and bad pains at night like extreme restlessness especially when the weather is bad. Im 24 by the way so not sure if that helps or not I certainly dont see my healing go any faster cause of my age lol. Also my vision sucks now. Im actually going to get that checked next week. It was bad prior to my ruptures but now its BAD. Not a recovery story but something to make you feel like you are not alone :slight_smile: also my arm 1st moved at 3 months post recovery I 1st walked with the platform walker at that time too. Moved my leg up and down (not walking just moving it at 4 months but walking with my walker between 3-4 months. My thumb moved this 4th month but a slight twitch. Its slow but its the little things that make it better. This month my head felt normal against my pillow which was big for me! Best sleep ever!! I hadnt truly slept in months post craniotomy my head just felt sensitive so that goes away too :slight_smile:


Forgot to mention I feel a bit more independent now too it was tough for me to be dependent on my fiance for a while but it certainly got us closer


Hi and welcome to the group! I had my rupture in July 2016; they placed me in a self-induced coma for 16 days the same day as the bleed to reduce the swelling before they were able to do the craniotomy. My bleed was underneath the cerebellum on my brainstem. I also didn’t have control of my airway and was placed on a ventilator the same day as the bleed; I was on the ventilator for 18 days. I am a very truthful person and don’t mean to scare anyone, however I thought I was in a nightmare for awhile once I gained consciousness.

I worked as a Firefighter/Paramedic, so it was very difficult for me to adjust being on the other side of the healthcare system. But here is what I remember about that experience. Since I was in bed unconscious for 18 days, I became very de-conditioned, still mind you after they successfully ex-tubated me; they placed a tracheostomy tube, which I had while they began my physical, occupational, and speech therapy. It wasn’t until I was about 48 days into the incident that I became aware that I wasn’t having a nightmare, and what was happing was real. I had to use an alphabet board to communicate with the nursing staff and most of the time they would get frustrated and throw the board into the corner; being a Paramedic I knew sign language and I was surprised that no one on staff knew sign language. If it wasn’t for the patience of my family member to take the time to write down what letters I was trying to spell, it would have been a more difficult recovery.

I didn’t have any use of my right arm and hand, and most of the time they had my left hand restrained. I could go on and on about other things I experienced including ICU delirium but it would go on for pages; perhaps oneday I should write a blog about my experiences. Well, on to the rest of my experience; I was unable to bear weight and walk, even through physical therapy; they tried everything including an exoskeleton to accomplish this. I was always just a day or so from being able to take a step when they said it was time to move on to another facility. They called it graduation day, I called it eviction day; they weren’t happy with that either.

When they discharged me to a skilled nursing facility; that day I left in a wheelchair. However they had some talented rehabilitation specialists that figured out that my right knee was very weak and was hyperextending, so they ordered a knee brace and an ankle brace and low and behold they were able to get me up and walking again after my leg was strengthened. It took some time, it wasn’t overnight; but by the time I was discharged 129 days into the ordeal I was able to use a walker with supervision. I was discharged from the SNF late October 2016 and as of today I am walking with a cane; I also have full use of my right arm and hand; so it’s been 18 months so far! But I still have a long way to go.

Being in the medical field I was able to identify some barriers to my recovery including two meds they had me on; I still have a lot of spasticity in both my legs some do to the AVM’s of the past and I believe some do to the identified meds that we removed. I start aquatic therapy soon; and they stopped all meds and will try a round of Botox to see if that is an alternative treatment for the spasticity. I have more side effects with the medications then I have help being on them.

I have had 4 other procedures in my life-time dealing with these AVM’s; 3 laminectomies on my spinal cord (T2-T3 area); before the 3rd operation they told me there was a 99% chance I would be paralyzed; I wasn’t. They said a 50% chance for the 2nd one. I’ve also had gamma knife to target 3 large AVM’s in my brain. Currently I have an AVM in my right PONS they are watching, we looked into conventional surgery, however it was decided it would be too risky; I would be probably doomed to a ventilator for the rest of my life; and since 4 cranial nerves intersect in the PONS I would lose control of some facial nerves. If it starts to be a problem; we have been discussing Cyber knife treatment.

I amazed my caretakers while I was in the hospital for the 129 days, they didn’t think I was totally aware of what was happening; I would point out things they were doing wrong and try to correct it. Skilled Nursing is a misnomer also; the physical, occupational, and speech therapists were outstanding, the nursing staff not so. Being a Paramedic I have transported 2 patients like me in my 25 year career; I feel blessed that I can type my experiences on this type of forum. Those two patients didn’t have much of a quality of life, and I sat with them for 3 hours during the transport looking at their medical records saying to myself; I should be just like them and thanked God I wasn’t.

I am just now being able to accept that I won’t be able to work ever again; mind you I am 55 years old. Some days this is a struggle. It isn’t easy; we all have our good days and bad days. I don’t feel confident enough to drive, so I hire a Lyft driver when my spouse can’t take me, because of work. I hope this helps answer some of your questions; but truthfully everyone has their own unique journey.


Hi, I had an avm bleed in my cerebellum my brain stem hurniated. I was in a comma for 4 days before they did a craniectomy removed the avm. This happened in May 2017 I’m still recovering and my doctor’s all say I still have recovery time ahead of me. I know that it’s hard, I’ve been very impatient, my ot and pt have all said I’ve exceeded expectations. Just keep up and you will too. I couldn’t even write my name when my recovery began let alone a sentence. Welcome to the group we were caterpillars but we’ve emerged into butterflies. We remember who we were but we are new and different now.


Hi there. I had my rupture in 1994, and the recovery takes a long time, but I walked out of the hospital 6 weeks after the incident. I had a left side avm and lost the use of my right side and there were times I wanted to give up. I am glad I didn’t. I am now in LPN, and have a degree in drafting. Even though I too had a crainiotomy, embolization, an 2 gamma knife procedures done, I still have the AVM. It looks months to recover and years to get where I am, but it is doable so be patient and keep going.

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Hello and welcome. All I can say for recovery therapy is it takes some time. I was paralyzed on my right side completely for a month before I was even able to move my right arm. After my surgeries and 2 months therapie I was able to walk but still had therapy for another couple months. My surgeries were back in 2000 and again in 2001. So all I can really say is it may take a long time but you can do this. Hope the best for you.

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How long did your ICU delirium last?