Hello everyone, I’d like to start off by saying thank you for sharing your stories and experiences. I may be a new member here but unfortunately not new to the avm journey and have resonated deeply with many experiences posted on here so thank you. My name is Bec and I was diagnosed with a large right parietal avm at the beginning of 2023 after having an mri scan to investigate a potential cause of my migraines. This diagnosis lead to many appointments and difficult treatment decisions being offered a few different options. In the end I elected to have the avm surgically removed and underwent the surgery later that year. The surgery was successful in removing the avm in its entirety but not without any complications. I was in an induced coma for 2 weeks had a long stay in icu and a long stay in physical rehabilitation. Unfortunately these complications have led to a complete loss of my left visual field (homonymous hemianopia), motor, sensation and dexterity deficits to my left side and epilepsy. Despite this, I know it was the right choice for me even when I have moments of feeling a bit down and I know how lucky I am to have had access to these treatment options and recovery services which have gotten me to where I am today.
I am wondering however whether anyone else can relate to acquiring a disability as a result of their avm or its treatment and how you navigate the feelings and experiences that come with this?
Welcome! You’ll see a common thread in our greetings, it’s great your here with us, too bad you had a reason! I am very fortunate to not have had to look into disability. We have members who have had a pretty straight forward process, and others who have had to fight like crazy to receive benefits. If you tap on the magnifying glass on the top right corner and do some searches some of these discussions will show up. I also some people who have had experiences along these lines will join in. We have a really great group about sharing our various challenges. Take Care, John.
Hey Becs,
Welcome to Ben’s Friends.
My name is Merl I’m a member of the Modsupport Team here on Ben’s Friends. I’ve required a few neurosurgeries to deal with another little nasty growing in my head and the results have been less than I’d hoped for.
Prior to all of this I’d worked for 10+yrs teaching people with disabilities independent living skills, all the things that most of us take for granted. To then be the one with a disability was a very bitter pill to swallow. I didn’t want to accept THIS, and a fought against it. Not good. That thing called ‘acceptance’ is on a bit of a sliding scale for me. Some days my symptoms are less and my limitations are less, but some days it’s all overwhelming and it crushes me. I think, for me, that fluctuation gives me a false sense of confidence that I can do more, but when I ‘do more’ it’s all too much. Pacing myself has been a must, breaking a task up into steps, do a couple of steps, then checking “Am I OK?” If yes, I continue. If not, I stop. If I don’t my symptoms increase and I pay for it in agony.
Mentally, this journey has tested me at every step. For years I was the helper. I didn’t need help, but now here I was, I need help and that was very foreign. I ended up talking to a counsellor/psychologist which was probably one of the best things I could have done (only wish I’d done so earlier). She helped me with that ‘acceptance’ thing. One thing she said to me was “What did you expect, you’ve had brain surgery…Give yourself a break” I didn’t expect ‘THIS’. None of us are here by choice, but here we are, so now, how do we move forward? I had this idea, “I could before, so I can now”, only I couldn’t and my frustration was HUGE. I had to go back to zero, lower my expectations and build from there.
I was my own worst enemy, trying to force myself to get back to where I was before. The fact was I’d changed, my life had changed and I hated it. I wanted the old me back, but that life was long gone. For me, it wasn’t that one day a switch clicked and I moved on but rather a slow, progressive type of acceptance, and it wasn’t a straight line of progression. As I’m often saying ‘I have good days, bad days and those days you wouldn’t wish on your worst enemy’ and that’s both physically and psychologically. If anybody tells you that it’s easy, they’ve never been in this situation themselves. We know this because we live it too.
Merl from the Modsupport Team
@Becs Hello and Welcome Thanks for sharing your story. I was in coma due to having a massive stroke due to 5 blood clots for a week then about six months later I got my avm which is a DAVF. At first my stroke left me paralyzed and unable to talk. Also brain damage, aphasia and constant pain.
After my first angiogram I had another stroke. I still have constant pain and sometimes still have trouble finding the correct words. I also have trouble sleeping. I tried going back to work but due to the pain and sleep issues I was not able keep up my job in trading.
You have been through a great deal. The good news is you are young and the brain does seem to recover best when we are young. I am under the care of the head of neuros of Stroke, Pain and Neuro Radiology at Stanford - and they just cant explain why in 2015 after 4 years why my brain show no signs of the two strokes but I still feel like doo doo. I still have left side weakness. I should of had neuro PT after the first stroke in 2011 , instead I recently had it 2023 and it was making me way too nauseous -
What helped me was accepting my new self and striving to get back to my old self. Doing PT every week at home is just part of my life to stay as strong as I can so I don’t trip and fall.
I took my skills and I serve on a few non profit boards and volunteer . I am also on my local county Aging Commission which is also a volunteer position
It does take time for out brains to heal and remap things . It is hard when we cant do things we normally did in the past. One of my friends is the top epileptic Neuro surgeons at UCSF in San Francisco and I know he always suggests a high protein diet which also my pain Neuro suggests to me. One thing my husband did for me was give me Coconut oil every day and my stroke Dr was actually shock at my recovery. We need good fats like Coconut oil, Extra virgin Olive Oil and real butter like Kerry Gold Butter and good protein for our brains.
Take it one day at time , practice your PT every day and listen to your body. We are lucky to be alive and you have been through a lot . We are here for you and we understand what it is like.
Hugs
Angela
Hi Becs, sorry to read about the awful time you have had to endure. I have a form of disability, following treatment for my right sided AVM in that I need to have someone (family or friend) with me all the time to assist me when one of my ‘episodes’ occurs. I had 3 embolisations in 2015 and then stereotactic radiotherapy in 2016, to deal with my AVM. My ‘Episodes’, which can last from 20 minutes to 10 hours, involve strange sensations in my head, then within a few minutes, I lose control of my left arm/hand, am unable to speak and also excruciating chest pain, and sometimes seizures. At that point, I need to be rushed to A&E in a blue light ambulance to give me medication which eventually lets my body settle down. Who know what the outcome would be if the Episode is not stopped at A&E. They have occurred numerous times since November 2018, which was 2 years after I had Stereotactic Radiotherapy (I was told it could be 2 years after the stereotactic radiotherapy before my AVM was obliterated). Fortunately my right sided AVM was obliterated, but unfortunately they found a Dural Fistula on the right side of my brain. This was then treated via an Embolisation in 2019, after which I was told it was benign.
My AVM was an incidental find when I appeared to have, what was initially called a TIA, in 2014. However, here I am, 10 years later, and I am still having ‘Episodes as a result of treatment for my AVM. My Neurologist has said that they have never seen anyone with my symptoms, with specific reference to the excruciating chest pain. The only diagnosis that has been confirmed is that I have Orthostatic Hypotension, which causes reduced blood pressure (in my case, the drop in blood pressure is extremely high). For most people, Orthostatic Hypotension is fairly mild, possibly fainting, but I assume that the lack of blood to my brain is causing all the symptoms of my Episodes to occur. This has never been confirmed, but I now understand that I am not going to be cured, and that I have to learn to live with my condition. This has been difficult to do, as people are constantly asking me how I am. I am now tell people not the enquire about my health, as I want to have a normal life, in between my Episodes. I hope you find some resolution to your disability, or at least find a way to live your best life with your disability.
Thank you Merl for that very relatable articulation of those feelings. It is nice to feel seen and understood by someone who has been there. I really appreciate your guidance and will definitely work towards acceptance implementing those strategies.
Best wishes, Bec
Thank you for sharing your experiences with me Angela and I really appreciate you sharing the advice you have collected with me it is very helpful and I will definitely incorporate it into me recovery.
My sincerest thanks,
Bec
Hi Bec,
I acquired a disability following my first brain bleed; paralysis on my left side, weakness, short-term memory loss and cognitive defiencies. While most of my side effects healed or improved with therapy, I still consider myself disabled and it’s a hard disability for others to wrap their minds around. When I went back to school (6th grade), my teachers saw that I was getting good marks. They didn’t see that I was putting in three times as much work in order to achieve.
My advice is to understand your disability and figure out what works to help you cope. It can be frustrating having to explain yourself to peers, but in my experience they will want to understand. For example, my fiancé knows I have short-term memory loss but it doesn’t always present typically. I try to let him know what I’m doing to navigate so he can be a support to me. For instance we went to a resort, and as we walked away from one of the buildings I turned around to look at it from the other way so I would know what to look for the next time. I explained that while I can follow the steps going forward, my brain can’t recall the steps in reverse. He was very empathetic, and it helps him support me when he understands where I struggle. Sometimes new struggles pop up when I’m not expecting them, so part of my disability is not knowing how to navigate new complications. I completely understand what you’re going through, and I wish you all the best!
-Julia
Can I ask you if you have a avm or if you did surgery ?
God bless you
Thank you for your understanding and advice Julia, I really appreciate it and find comfort in knowing I’m not alone.
Best wishes, Bec
I had a large right parietal avm but I had surgery to remove it so I no longer have an avm. The disabilities I acquired were a result of the surgery and its various complications.
My AVM was in my brain; I don’t have any real knowledge of what to do, concerning spinal avms.
My AVM was large enough that it caused a whole hemisphere my brain to die before I was even a full fetus. It bled, first, in the womb. I was born in 1971, with a port wine stain birthmark on my face.
My second bleed occurred in 1980, then I experienced 13 more until May of 1987. When I was not able to be awakened, chopper was dispatched to carry me from my hometown to Johns Hopkins University hospital.
Of course, when my parents arrived at Johns Hopkins University hospital, I was not there. I was across town at the shock trauma center, at the University of Maryland hospital.
Therefore, I had to be flown across the city from the first hospital to the second hospital and that is where my story gets really interesting.
I underwent a surgical procedure to install a shunt in my brain, to relieve pressure and fluid; however, during my stay in the recovery room, following that operation, a strain of meningitis attacked my system. This caused my blood temperature to rise to 107° f and almost killed me.
Hey Mattramzzz,
I’m Merl I’m a member of the modsupport Team here on Ben’s Friends.
I too have a shunt to deal with fluid, not for an AVM but another growth which has blocked the natural flow of the fluid. I’ve had a few issues with it all and now have one functioning shunt and one non-functioning device (minus the valve) in there too. The whole journey has been a HUGE rollercoaster and just when I think I’ve got it all under control it throws me another curve ball.
At my last neurosurgical review, it was recommended I have another craniotomy and a procedure known as an ETV (Endoscopic Third Ventriculostomy) performed, but as my present shunt is still functioning, I queried ‘Why?’. The best answer they could give was “Well, it might help…”. Let’s just say I’m less than reluctant to have another craniotomy and I declined the procedure. I know in the future I will have no choice, when this shunt breaks and I’ll reassess from there.
Merl from the Modsupport Team