Teresa’s Story – Haemorrhagic Stroke at 17 caused by Arteriovenous Malformation (AVM)

 FYI.

Teresa’s Story – Haemorrhagic Stroke at 17 caused by Arteriovenous Malformation (AVM)

My story started when I was 17. On summer break, getting ready to finish my A levels to then go off to university. It was a bit of a weird summer for me, and starting great with my first proper attendance at Glastonbury – this was the first of many, but that is a different kind of story (it was just down the road from me so a rite of passage for all of us). After that I had to have a back operation. All went well just to fix a curvy spine (scoliosis). So, from the start of a mad party summer this led to a chilled recuperating summer and then six weeks rest.

Coming up to the end of recuperation it was a weekend, and really warm, so I had a delightful walk about one of my favourite stone circles in Somerset.  It was a pretty good day, then I came home  and I popped a film on. It was ‘As Good as It Gets.’

Then everything changed.

During the film I had some strange things occurring, and just small things at first; uncontrollable dribbling (weird yeah?) and so I went to see my mum. I tried to chat to her but I just couldn’t get any words out – just sounds! It was so strange. Mum looked at me and noticed my mouth had dropped to one side and said
“I think you’re having a stroke!”

I was thinking it was just my mum being the hypochondriac that she can be, but she rang for an ambulance anyway. It turned up and paramedics did checks, but could not really find anything that was odd, except that I wasn’t speaking. They then gave me a pencil to try and write something down, but I couldn’t write anything. I could hold the pencil, but couldn’t remember how to write anything or even USE a pencil. It was all too much, and I just burst into tears. I couldn’t control that either. There was no control of anything…

Tests and scans would show I’d had an aneurysm. It was quite deep down in the brain and was caused by abnormal blood vessels. So, my mum was right – it was a stroke.

I spent a couple of months in a rehabilitation hospital, (re)learning how to read, write, and also talk after a diagnosis of aphasia as well, as all the other things most of us  take for granted. The weird thing about talking was that if you asked me a question, I could visualise the answer, but I couldn’t get the words out! Fine motor skills had also gone, so I had problems with eating and using my hands. I remember trying to write thank you notes for ‘get-well’ presents, trying to spell words and sound them out like I did in school, but it didn’t work anymore.

Frustration was the main thing here, but I remember just trying to be patient with myself and that was the most important thing. There was a lot of anxiety and emotions that I couldn’t handle properly. It really was quite a hard time in my life, and acceptance was difficult – and that this had actually happened to me.

After lots of work with the speech and language therapist and helped by the fact that I did not shut up talking. If you know me then I am very chatty – and my speech started coming back. Reading and writing took longer, but I did return to college. I had a year out of proper education, but attended some classes with a scribe so I could catch up with friends. I start learning again (I LOVE learning) and so also to got some normality back in my life!

The first book I read after my rehab was Rik Mayall’s autobiography ‘Bigger than Hitler – Better than Christ’. He is also someone that had a brain related illness, which made it more relatable for me, and also, I am a big FAN!

I returned to college full-time the year after, with lots of support from the staff; extra time for exams, extra support needed. I worked my hardest at the same time as having some cool ass surgery to deal with the blood vessels. It’s called Gamma Knife surgery (using gamma rays). I thought I was like the HULK or some other cool superhero (or if you are a King Gizzard and Lizard Wizard fan – there is a whole song that I can relate to!) and I got the grades to get into university to study archaeology in Bristol.

When I went to university, I did not embrace the stroke and I really tried to hide from it and although everything was OK, and that I didn’t need extra help. Strokes are an old person thang. I knew what I was doing. Actually all I had to do, if I needed help, was to ask – but I didn’t! I struggled for my first two years. My grades were not too bad, but I was slow at taking notes and keeping up. All my essays would have syntax problems and so they were marked down, and there were a couple of times where hand ins were late, or I didn’t understand the assignment properly. I lost confidence with my public speaking as well; you cannot notice the stroke at all in my face now but in the back of my mind I always felt like someone could see my mouth drop or that there was dribble out the corner of my mouth.

Between finishing my second year and going into third year I thought I should do the right thing and ask for help. I got an assessment and yes, I was officially diagnosed with dyslexia and dyspraxia and so my university life changed; back to extra time for exams, essays marked on content and not syntax.

My grades all changed, my confidence returned, and I started to ask tutors when I was unsure. This really was a turning point for me; to always ask for help now and not suffer in silence – and to never let anything hold me back in what I wanted to do!

At work and out of work I love to bring people together! My job at the university is on the welcome Desk at the Sir Duncan Rice Library and I am always trying to get involved with different projects, especially those that bring people together. What I love about the university is that it’s a place I can get involved with all types of projects from outreach work to detailed copyright work. I feel like I have support and can ask as many questions as I like. 

What I love about the university is that it’s a place I can get involved with all types of projects from outreach work to detailed copyright work. I feel like I have support and can ask as many questions as I like.

Visit our website for 'Useful Links' that may be helpful to survivors and their families

This passion for bringing people together is shared in my volunteering role. When I moved to Aberdeen seven years ago, I needed to find some type of community and I joined GGI (Girl Gone International); a Facebook social impact community group. I started to meet people, made friends, and then wanted to help with planning events.

This led to me being an event host. I then moved up to become a community leader, leading groups and training other volunteers, and doing behind the scenes admin tasks. What I love about this is it’s a safe place for people to meet and connect, and not just in Aberdeen but worldwide. Last year I stepped up to become global support. This for me was quite scary as I was worried about my level of professional writing, but the team is a great support – with us being such a diverse rainbow of people and “thrive, connect and support” are at the core of the group!

So, at the moment I am looking after all the UK groups and I help supporting groups worldwide. This is a girl who had forgotten how to speak, that was very conscious of her public presentation skills – and now I’m hosting online workshops, leading groups of over 2,000 members to form communities and combat loneliness, traveling across countries to meet and connect. We had a massive summit meeting in Lithuania with eighty attendees for across the globe, sharing ideas thoughts and strategies! I even got to host a trip away to Iceland last December – and yes, I got to see those Northen Lights!!! My next steps will be to start working on the data side of things, to allow my CPD within the group and push the boundaries again – me, out of my comfort zone!

The key for me was frustration – and I was so lucky to make the kind or recovery I did. This was due to the support of my friends, my family, and my POSITIVITY. Sometimes I think of what a different journey I might have taken without the stroke, but I guess it just would not have been as interesting – and I do love a challenge!

Never forget what you love doing.
Always stop and ask for help wherever you are in work life or academia.
Never stop being you.
Embrace the different side of you.

My story is just one flavour in the big mix of ‘neurospiciness’ – and one spice by itself can be powerful, but a mixture of spices is aways better. Keep sharing!

Extensive Cerebral Arteriovenous Malformation-Associated Intraventricular Hemorrhage

 Not even an abstract so you have to hope your doctor is up-to-date on this before repair starts on your AVM.

Extensive Cerebral Arteriovenous Malformation-Associated Intraventricular Hemorrhage

 

Show all authors

Amine Awad, MD, Kow Essuman, MD, PhD, Robert W. Regenhardt, MD, PhD, ...

First Published September 27, 2021 Other 

https://doi.org/10.1177/19418744211049047

Article information

Article Information

Article first published online: September 27, 2021

Amine Awad, MD¹, Kow Essuman, MD, PhD², Robert W. Regenhardt, MD, PhD^{1, 2}, Thabele M. Leslie-Mazwi, MD^{1, 2}, Aman B. Patel, MD², Christopher J. Stapleton, MD²

¹Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

²Department of Neurosurgery, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA

Corresponding Author:

Amine Awad, Department of Neurology, Massachusetts General Hospital, 55 Fruit St, WACC 8-835, Boston, MA 02114, USA. Email: amawad@mgh.harvard.edu

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Treatment-Associated Stroke in Patients Undergoing Endovascular Therapy in the ARUBA Trial

If you have an upruptured AVM you'll have to ask your doctor EXACTLY WHAT IS BEING DONE TO PREVENT THAT 16% RISK OF STROKE. This is your doctor's responsibility, don't let her pooh pooh the risk, it's your life, not hers that is on the line. Ask about the efficacy of the protocol she is using.

Treatment-Associated Stroke in Patients Undergoing Endovascular Therapy in the ARUBA Trial

Joshua D. Burks

,

Evan M. Luther

,

Vaidya Govindarajan

,

Stephanie H. Chen

,

Robert M. Starke

Originally published8 Oct 2021https://doi.org/10.1161/STROKEAHA.120.033743Stroke. ;0:STROKEAHA.120.033743

Abstract

Background and Purpose:

Since the publication of ARUBA trial (A Randomized Trial of Unruptured Brain Arteriovenous Malformations), outcomes in treated and untreated patients with unruptured arteriovenous malformation have been thoroughly compared. However, no prior analysis of ARUBA patients has sought to identify risk factors for perioperative stroke. Improved understanding of risks within the ARUBA cohort will help clinicians apply the study’s findings in a broader context.

Methods:

The National Institute of Neurological Disorders and Stroke database was queried for all data relating to ARUBA patients, including demographics, interventions undertaken, and timing of stroke. Retrospective cohort analysis was performed with the primary outcome of perioperative stroke in patients who underwent endovascular intervention, and stroke risk was modeled with multivariate analysis.

Results:

A total of 64 ARUBA patients were included in the analysis. One hundred and fifty-ninth interventions were performed, and 26 (16%) procedures resulted in stroke within 48 hours of treatment.(Way too high.) Posterior cerebral artery supply (adjusted odds ratio, 4.42 [95% CI, 1.23–15.9], P=0.02) and Spetzler-Martin grades 2 and 3 arteriovenous malformation (adjusted odds ratio, 7.76 [95% CI, 1.20–50.3], P=0.03; 9.64 [95% CI, 1.36–68.4], P=0.04, respectively) were associated with increased perioperative stroke risk in patients who underwent endovascular intervention. Patients treated in the United States or Germany had a significantly lower stroke risk than patients treated in other countries (adjusted odds ratio, 0.18 [95% CI, 0.04–0.82], P=0.02).

Conclusions:

Knowing patient and lesion characteristics that increase risk during endovascular treatment can better guide clinicians managing unruptured brain arteriovenous malformation. Our analysis suggests risk of perioperative stroke is dependent on Spetzler-Martin grade and posterior-circulation arterial supply. Differences in regional treatment paradigms may also affect stroke risk.

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Long-Term Outcomes of Elderly Brain Arteriovenous Malformations After Different Management Modalities: A Multicenter Retrospective Study

 You'll have to ask your doctor what elderly means because elderly are not suggested to get their AVMs fixed.

Long-Term Outcomes of Elderly Brain Arteriovenous Malformations After Different Management Modalities: A Multicenter Retrospective Study

Yu Chen¹, Debin Yan¹, Zhipeng Li¹, Li Ma¹, Yahui Zhao¹, Hao Wang¹, Xun Ye^1,2, Xiangyu Meng³, Hengwei Jin³, Youxiang Li³, Dezhi Gao⁴, Shibin Sun⁴, Ali Liu⁴, Shuo Wang¹, Xiaolin Chen^1* and Yuanli Zhao^1,2*

• ¹Department of Neurosurgery, Beijing Tiantan Hospital, Capital Medical University, Beijing, China
• ²Department of Neurosurgery, Peking University International Hospital, Peking University, Beijing, China
• ³Department of Interventional Neuroradiology, Beijing Tiantan Hospital, Capital Medical University, Beijing, China
• ⁴Department of Gamma-Knife Center, Beijing Tiantan Hospital, Capital Medical University, Beijing, China

Background: More and more elderly patients are being diagnosed with arteriovenous malformation (AVM) in this global aging society, while the treatment strategy remains controversial among these aging population. This study aimed to clarify the long-term outcomes of elderly AVMs after different management modalities.

Methods: The authors retrospectively reviewed 71 elderly AVMs (>60 years) in two tertiary neurosurgery centers between 2011 and 2019. Patients were divided into four groups: conservation, microsurgery, embolization, and stereotactic radiosurgery (SRS). The perioperative complications, short-term and long-term neurological outcomes, obliteration rates, annualized rupture risk, and mortality rates were compared among different management modalities in the ruptured and unruptured subgroups. Kaplan-Meier survival analysis was employed to compare the death-free survival rates among different management modalities. Logistic regression analyses were conducted to calculate the odds ratios (ORs) and 95% confidence intervals (CI) for predictors of long-term unfavorable outcomes (mRS > 2).

Results: A total of 71 elderly AVMs were followed up for an average of 4.2 ± 2.3 years. Fifty-four (76.1%) presented with hemorrhage, and the preoperative annualized rupture risk was 9.4%. Among these patients, 21 cases (29.6%) received conservative treatment, 30 (42.3%) underwent microsurgical resection, 13 (18.3%) received embolization, and 7 (9.9%) underwent SRS. In the prognostic comparison, the short-term and long-term neurological outcomes were similar between conservation and intervention both in the ruptured and unruptured subgroups (ruptured: p = 0.096, p = 0.904, respectively; unruptured: p = 0.568, p = 0.306, respectively). In the ruptured subgroup, the intervention cannot reduce long-term mortality (p = 0.654) despite the significant reduction of subsequent hemorrhage than conservation (p = 0.014), and the main cause of death in the intervention group was treatment-related complications (five of seven, 71.4%). In the logistic regression analysis, higher admission mRS score (OR 3.070, 95% CI 1.559–6.043, p = 0.001) was the independent predictor of long-term unfavorable outcomes (mRS>2) in the intervention group, while complete obliteration (OR 0.146, 95% CI 0.026–0.828, p = 0.030) was the protective factor.

Conclusions: The long-term outcomes of elderly AVMs after different management modalities were similar. Intervention for unruptured elderly AVMs was not recommended. For those ruptured, we should carefully weigh the risk of subsequent hemorrhage and treatment-related complications. Besides, complete obliteration should be pursued once the intervention was initiated.

Clinical Trial Registration: http://www.clinicaltrials.gov. Unique identifier: NCT04136860

Introduction

Brain arteriovenous malformations (AVMs) were described as cerebrovascular abnormalities with fistulous connections between arteries and veins without normal intervening capillary beds (Crawford et al., 1986; Solomon and Connolly, 2017; Goldberg et al., 2018). Most AVMs were diagnosed in the fourth and fifth decade of life (Perret and Nishioka, 1966), and elderly AVMs were relatively uncommon in clinical practice. Over the past three decades, neurosurgeons have not yet reached a consensus on whether or not to intervene in these patients. Initially, several studies suggested that the risk of rupture decreases as a person reaches middle age, and these lesions are relatively benign in elderly patients (Luessenhop and Rosa, 1984; Heros and Tu, 1987). However, Harbaugh et al. suggested the opposite (Harbaugh and Harbaugh, 1994). Several subsequent studies reported that 35.7–65.6% of elderly AVMs presented with hemorrhage, and they recommended microsurgical resection or stereotactic radiosurgical surgery (SRS) for carefully selected patients (Hashimoto et al., 2004; Nagata et al., 2006; Pabaney et al., 2016; Burkhardt et al., 2018; Chen et al., 2018). However, the previous studies only included a single treatment strategy for analysis and did not compare the long-term outcomes of different management modalities.

As life expectancy continues to increase in this global aging society, more elderly AVMs are being diagnosed. We must clarify the long-term outcomes of different management modalities for these patients. The present study retrospectively reviewed 71 elderly AVMs from our multi-center retrospective database of 2861 AVMs to specify the natural history and long-term outcomes after different management modalities.

More at link.

 

Onyx embolization for dural arteriovenous fistulas: a multi-institutional study

I thought gluing was not done for brain work. Ask your doctor for guarantees on its use.
FDA issues warning about Covidien brain device that has killed nine - Onyx glue

 

Onyx embolization for dural arteriovenous fistulas: a multi-institutional study

1. http://orcid.org/0000-0002-3634-883XYangchun Li1,
2. Stephanie H Chen2,
3. Ridhima Guniganti3,
4. Akash P Kansagra4,
5. Jay F Piccirillo4,
6. Ching-Jen Chen5,
7. Thomas Buell6,
8. Jason P Sheehan7,
9. http://orcid.org/0000-0002-2627-446XDale Ding8,
10. Giuseppe Lanzino9,
11. http://orcid.org/0000-0001-5271-5524Waleed Brinjikji10,
12. Louis J Kim11,
13. http://orcid.org/0000-0003-3612-3347Michael R Levitt12,
14. Isaac Josh Abecassis13,
15. Diederik O Bulters14,
16. Andrew Durnford15,
17. http://orcid.org/0000-0002-7762-9902W Christopher Fox16,
18. Adam J Polifka17,
19. Bradley A. Gross18,
20. Samir Sur1,
21. David J McCarthy18,
22. Dileep R Yavagal19,
23. http://orcid.org/0000-0002-0625-8438Eric C Peterson20,
24. Minako Hayakawa21,
25. http://orcid.org/0000-0002-5932-2683Colin Derdeyn22,
26. Edgar A Samaniego23,
27. Sepideh Amin-Hanjani24,
28. http://orcid.org/0000-0002-1491-4634Ali Alaraj25,
29. Amanda Kwasnicki26,
30. Fady T Charbel25,
31. http://orcid.org/0000-0002-0814-5680J Marc C van Dijk27,
32. Adriaan RE Potgieser28,
33. Junichiro Satomi29,
34. Yoshiteru Tada30,
35. Adib Abla31,
36. Ryan Phelps32,
37. Rose Du33,
38. Pui Man Rosalind Lai33,
39. Gregory J Zipfel34,34,
40. Robert M Starke1,35
41. On behalf of the Consortium for Dural Arteriovenous Fistula Outcomes Research

Author affiliations

Abstract

Background Although the liquid embolic agent, Onyx, is often the preferred embolic treatment for cerebral dural arteriovenous fistulas (DAVFs), there have only been a limited number of single-center studies to evaluate its performance.

Objective To carry out a multicenter study to determine the predictors of complications, obliteration, and functional outcomes associated with primary Onyx embolization of DAVFs.

Methods From the Consortium for Dural Arteriovenous Fistula Outcomes Research (CONDOR) database, we identified patients who were treated for DAVF with Onyx-only embolization as the primary treatment between 2000 and 2013. Obliteration rate after initial embolization was determined based on the final angiographic run. Factors predictive of complete obliteration, complications, and functional independence were evaluated with multivariate logistic regression models.

Results A total 146 patients with DAVFs were primarily embolized with Onyx. Mean follow-up was 29 months (range 0–129 months). Complete obliteration was achieved in 80 (55%) patients after initial embolization. Major cerebral complications occurred in six patients (4.1%). At last follow-up, 84% patients were functionally independent. Presence of flow symptoms, age over 65, presence of an occipital artery feeder, and preprocedural home anticoagulation use were predictive of non-obliteration. The transverse-sigmoid sinus junction location was associated with fewer complications, whereas the tentorial location was predictive of poor functional outcomes.

Conclusions In this multicenter study, we report satisfactory performance of Onyx as a primary DAVF embolic agent. The tentorium remains a more challenging location for DAVF embolization, whereas DAVFs located at the transverse-sigmoid sinus junction are associated with fewer complications.

http://dx.doi.org/10.1136/neurintsurg-2020-017109

 

 

Medical management with interventional therapy versus medical management alone for unruptured brain arteriovenous malformations (ARUBA): final follow-up of a multicentre, non-blinded, randomised controlled trial

If you have one of these you should have a long discussion with your doctor. 

Lots of controversy.

Unruptured cerebral arteriovenous malformations are better off treated medically: the ARUBA trial

September 2017 

Leading Cause of Stroke in Young Going Untreated – and It Shouldn’t, Study Finds - AVMs  March 2016

The latest here:

Medical management with interventional therapy versus medical management alone for unruptured brain arteriovenous malformations (ARUBA): final follow-up of a multicentre, non-blinded, randomised controlled trial

• Prof Jay P Mohr, MD
• Jessica R Overbey, DrPH
• Prof Andreas Hartmann, MD
• Prof Rüdiger von Kummer, DrMed
• Prof Rustam Al-Shahi Salman, FRCP
• Prof Helen Kim, PhD
• et al.
• Show all authors

Published:July, 2020DOI:https://doi.org/10.1016/S1474-4422(20)30181-2

Summary

Background

In A Randomized trial of Unruptured Brain Arteriovenous malformations (ARUBA), randomisation was halted at a mean follow-up of 33·3 months after a prespecified interim analysis showed that medical management alone was superior to the combination of medical management and interventional therapy in preventing symptomatic stroke or death. We aimed to study whether these differences persisted through 5-years' follow-up.

Methods

ARUBA was a non-blinded, randomised trial done at 39 clinical centres in nine countries. Adults (age ≥18 years) diagnosed with an unruptured brain arteriovenous malformation, who had never undergone interventional therapy, and were considered by participating clinical centres to be suitable for intervention to eradicate the lesion, were eligible for inclusion. Patients were randomly assigned (1:1) by a web-based data collection system, stratified by clinical centre in a random permuted block design with block sizes of two, four, and six, to medical management alone or with interventional therapy (neurosurgery, embolisation, or stereotactic radiotherapy, alone or in any combination, sequence, or number). Although patients and investigators at a given centre were not masked to treatment assignment, investigators at other centres and those in the clinical coordinating centre were not informed of assignment or outcomes at any of the centres. The primary outcome was time to death or symptomatic stroke confirmed by imaging, assessed by a neurologist at each centre not involved in the management of participants' care, and monitored by an independent committee using an adaptive approach with interim analyses. Enrolment began on April 4, 2007, and was halted on April 15, 2013, after which follow-up continued until July 15, 2015. All analyses were by intention to treat. This trial is registered with ClinicalTrials.gov, NCT00389181.

Findings

Of 1740 patients screened, 226 were randomly assigned to medical management alone (n=110) or medical management plus interventional therapy (n=116). During a mean follow-up of 50·4 months (SD 22·9), the incidence of death or symptomatic stroke was lower with medical management alone (15 of 110, 3·39 per 100 patient-years) than with medical management with interventional therapy (41 of 116, 12·32 per 100 patient-years; hazard ratio 0·31, 95% CI 0·17 to 0·56). Two patients in the medical management group and four in the interventional therapy group (two attributed to intervention) died during follow-up. Adverse events were observed less often in patients allocated to medical management compared with interventional therapy (283 vs 369; 58·97 vs 78·73 per 100 patient-years; risk difference −19·76, 95% CI −30·33 to −9·19).

Interpretation

After extended follow-up, ARUBA showed that medical management alone remained superior to interventional therapy for the prevention of death or symptomatic stroke in patients with an unruptured brain arteriovenous malformation. The data concerning the disparity in outcomes should affect standard specialist practice and the information presented to patients. The even longer-term risks and differences between the two therapeutic approaches remains uncertain.

Funding

National Institute of Neurological Disorders and Stroke for the randomisation phase and Vital Projects Fund for the follow-up phase.

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20 year-old Lincoln Southwest graduate makes remarkable progress after debilitating stroke

If this is a surprise then that original hospital was a complete failure at getting him recovered. There should be no surprises. After an objective damage diagnosis you select the exact stroke rehab protocols proven to get to recovery.  Yes, this is pie in the sky right now but until we get there survivors will be screwed with just fucking lazy rehab guidelines.

20-year-old Lincoln Southwest graduate makes remarkable progress after debilitating stroke 

 

The first sign that Tyler Henshaw’s life was about to change, to become something he’d likely never even conceived as a possibility in his 19 years, was a headache.

The 2018 graduate of Southwest High School who loves math and science and history had just started his second quarter at Southeast Community College on that first day of February when he told his mom his head hurt.

Kerri Henshaw remembers her son holding the right side of his head, and she gave him something for a migraine, because it looked bad and she figured Tylenol might not do it.

She told him to go downstairs to his room, that she’d check on him in a half-hour or so. She heard the door shut. Thirty seconds later, she heard him bang against the bookshelves and wall.

She ran downstairs, saw her son on the floor, vomiting. She called 911, turned him on his side, tried to calm his twin 3-year-old brothers standing in the doorway crying. She remembers their new puppy going nuts.

“It was scary,” she said. “It was terrifying.”

It would get worse.

At the hospital, doctors told her and her husband that her son had suffered a debilitating stroke and there were no neurological responses in his brain.

Essentially, Kerri Henshaw said, doctors were saying their son was brain-dead.

Doctors could perform surgery, the outcome unknown, or let him go.

Tyler, now 20, is the oldest of James and Kerri Henshaw's six children, including 17-year-old twin boys, a 13-year-old daughter and the 3-year-olds.

Doctors told them Tyler was young, healthy and strong and surgery seemed like a reasonable option. His parents did not hesitate.

Operate, they said.

A condition he’d had since birth but no one had known about caused the stroke: arteriovenous malformation, or AVM, involves an abnormal tangle of blood vessels connecting arteries and veins in the brain. The tangle disrupts the process of arteries taking oxygen-rich blood from the heart to the brain and veins taking the oxygen-depleted blood back to the heart and lungs.

During surgery, doctors removed the tangled blood vessels and stopped the bleeding. They drained more than a liter of blood from Tyler's brain, his mom said.

He made it through surgery, but doctors worried he wouldn’t survive, said Dr. Matthew Driewer, one of the medical directors at Madonna Rehabilitation Hospital in Lincoln.

Three days after the surgery, they saw some slight movement of Tyler's extremities. Three days after that, he opened his eyes.

* * *

Today — nearly 11 months after his stroke — Tyler is living at home with his parents. He's beginning to speak and communicates by pointing to letters on a whiteboard. He'll soon get an electronic pad to help him communicate. He’s regained the use of his right arm, which allows him to maneuver his wheelchair on his own. He can get up without the use of a lift and he’s taken a few steps.

He’s doing the college-level calculus he’d been doing before the stroke. His personality is poking through the wreckage of the trauma, his dry wit, his humor, as Tyler hangs out with his 3-year-old siblings at Madonna, where he spends three days a week doing physical, occupational, vision, recreation and speech therapy.

“R-U-G-R-A-T-S,” he spells out on his white board for a visitor, throwing a glance to Alex and Landon lying on the mats next to him.

His recovery, doctors say, has been remarkable.

“It happens, but not very often. Most of the time the story is very sad, and it takes a long time for families to understand they aren’t making any progress,” Driewer said. “He’s the shining star.”

It’s been a long road, though.

Doctors had to do surgery to put in tubes for feeding and medication, and a day later nurses cleaning the wound nicked the feeding tube. The subsequent leaking caused Tyler to become septic, which led to another surgery.

Then he had surgery to remove a cyst and later, surgery to drain an abscess. During that procedure, his lung was punctured, which led to more infection doctors attacked with high doses of antibiotics. That was followed by surgery to remove his gall bladder.

He's struggled with sickness that causes him to aspirate, though it's getting better.

“It’s just been a roller-coaster,” said his mom.

Along with the lows, there were highs: When Tyler first opened his eyes, Kerri Henshaw remembers thinking "I just hope he remembers us." During therapy at Madonna about a month later, therapists told him to look at his mom, and he turned his head, slowly, to look at her.

In July — five months after the stroke — Tyler moved from Madonna’s specialty hospital to its acute rehabilitation hospital, and the rate of his progress sped up.

"There was something new every week," his mom said.

He operated his first wheelchair by pressing his head against a headrest, but, within weeks, he could use his arm well enough to drive a wheelchair with a joystick.

The first words he pointed out on the whiteboard: "I love you, mom."

He has gaps — he doesn’t remember starting school at SCC, or getting a new puppy three months before the stroke, nor does he remember the five months in the specialty hospital.

But his mom is keeping a journal — just in case he wants to read it someday.

He’s doing college-level schoolwork and likes to talk politics with his dad.

“He’s just as sharp as he ever was,” his mom said.

* * *

In October, doctors determined there were no more tangles of arteries and veins that caused the earlier stroke — good news.

On Oct. 9, Tyler moved home.

The family’s living room has turned into his bedroom, though his family hopes to renovate the home so that ultimately he can have his own space.

His parents had to learn how to fill and clean his feeding tube, suction his tracheostomy and give him medication. Until recently, his mom slept nearby on the couch.

For Kerri Henshaw, who brings her son to Madonna's rehabilitation day program —  along with the young twins — three times a week and is his primary caregiver at home, it’s hard to recognize the progress sometimes. But then she thinks back to where they started and where her son is now.

They take one day at a time, she said, and don’t take the good stuff for granted.

“You never think something like this can happen. Life can change in an instant,” she said. "The little dumb stuff doesn't matter anymore."

Tyler’s siblings help out, and the young twins play with him, their toys helping him with his fine motor skills. 

His mom thinks Tyler's plans before the stroke — to apply to engineering college at the University of Nebraska-Lincoln — could still be in his future.

"It might take a little longer, but, hey, that's OK," she said.

Driewer thinks Tyler's parents, who fought for him relentlessly, are a big part of his progress.

“I think it has a lot to do with the person and a lot to do with their attitude and grit,” he said. “For Tyler, it has a lot do with the grit of his parents, because they were by his side all the time — even with the twins.”

Tyler's mom thinks her son's stubborn streak is one of the things that helps him keep pushing. 

And he knows exactly what he wants for Christmas. He spells it out, without hesitation.

T-O W-A-L-K.

Why Paralympian Billy Lister Says His Stroke “Was The Greatest Thing That Ever Happened To Me”

My story; I would still be leading a life of quiet desperation.

Why my stroke was the best thing to ever happen to me

And this other survivor;

Surviving a Stroke: How Almost Dying Taught Me How to Really Live 

Not that I expect others to adopt this attitude. 

 

 

Why Paralympian Billy Lister Says His Stroke “Was The Greatest Thing That Ever Happened To Me”

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By Karen Price | May 16, 2019, 12:02 a.m. (ET)

Billy Lister, pictured at the 2018 UCI Para-cycling Road World Championships, competes this week at the second world cup stop of the 2019 season in Ostend, Belgium.

Billy Lister describes his Team USA journey as happening at light speed, and it’s certainly hard to argue with the assessment.
The Paralympic cyclist had his first international racing experience in 2015, he said, later qualified for the Paralympic Games Rio 2016 and then competed in one of the biggest sporting events on earth, all in a relatively short period of time.
When it comes to his Paralympic career, however, he’s in it for the long haul and already eager for his next shot in 2020.
“I feel personally that I’ve come to a really positive place in my life and athletic path in this journey,” said Lister, who will turn 37 on May 23. “I really feel confident that I’ve set myself up to be successful as Team USA approaches these next 14 months between now and the (Paralympics). The pressure is building, but that’s exciting because that’s what we want. As athletes, that’s what we live for.”
The Para-cycling world cup season just got underway in Corridonia, Italy, where the U.S. won seven gold, eight silver and four bronze medals and currently sits in third in the UCI rankings behind Netherlands and Italy. Lister wasn’t a medalist, but he was looking forward to the world cup this week in Ostend, Belgium, where the pancake-flat terrain suits his “put your head down and go straight as fast as you can” mentality in the time trial, his strongest event. He took third in the time trial last season in Ostend.
As important as the world cup races are, however, Lister’s primary goal is to be on the podium, hopefully twice, at the world championships later this season. Lister has been so focused on performing well this year, helping Team USA to take as many athletes as possible to Tokyo in 2020 and launching into that all-important year on a high note that he opted to skip the track cycling world championships this year in order to better prepare for the road season.
“It was really about just recharging physically and mentally and coming into this season really good, feeling great and chomping at all the bits to get the racing underway,” he said. “It was really exciting last weekend to get that first race under my belt and now I’m really looking forward to taking those performances and turning them into podium performances and doing the best that I can for Team USA.”
This year has implications for Tokyo in 2020, Lister explained, because the U.S. is trying to accumulate as many points as possible in the world cups and world championships races. The more points they have, the more slots will be available for team members to compete at the Paralympic Games.
The most points are available at the world championships in Emmen, Netherlands, in September, he said, and that’s where he’s focusing his energy this year. In 2018, Lister was fourth in the time trial and ninth in the road race at the world championships, and the year before that, he took bronze in the time trial.
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“Personally speaking, I’m putting my full force and everything I have into preparing for the road world championships,” he said. “It’s one of the most important races of the quad outside of the Games and I’m putting everything I have into that race in the hopes and preparation for coming home with two medals: one in the time trial and one in the road race, with the goal being to get the best possible color in both of those medals.”
It wasn’t even quite eight years ago that Lister got on a bike for the first time since he was a teenager, attending a paratriathlon camp for the Challenged Athletes Foundation.
The Cold Spring Harbor, New York, native underwent surgery to correct a rare and acute brain abnormality known as an arteriovenous malformation — or AVM — when he was 16 years old. Although successful, he later suffered swelling in the brain that led to the loss of some function on his left side, and then at the age of 17 he endured a stroke.
He now serves as a spokesman for the National Stroke Association, American Heart Association and American Stroke Association. May is National Stroke Awareness Month in the U.S., and it’s a topic about which Lister is understandably passionate.
“I always say, and tell other stroke survivors, that my stroke was the greatest thing that ever happened to me,” he said. “I’ll tell that to a room full of people and when they hear that it tends to change their perception and the way they view stroke, whether it happened to them or maybe a son or daughter, father, uncle, brother, sister.”
The fact that experiencing a life-changing stroke doesn’t mean the end of one’s life is one message Lister tries to convey when speaking to other survivors and families about his own experiences.
The other message is to just say yes.
“I found that for such a long time I was wading through life after my stroke,” he said. “Granted, I was just a teenager, but over the next decade I found myself saying no a lot. I shied away from things and I really missed out on a lot of experiences. Once I started saying yes to everything, no matter what, that’s what opened a lot of opportunities for me that I’m so lucky to have in my life right now. A stroke can really turn your life completely upside down until you realize that you can just switch the glasses and the lenses you’re looking through.
“It’s difficult to change the way you view life, but once you switch lenses it becomes a lot easier and clearer, and I can speak from personal experience that it becomes a lot more fun.”
Karen Price is a reporter from Pittsburgh who has covered Olympic sports for various publications. She is a freelance contributor to TeamUSA.org on behalf of Red Line Editorial, Inc.

Unruptured Brain Arteriovenous Malformations: Primary ONYX Embolization in ARUBA (A Randomized Trial of Unruptured Brain Arteriovenous Malformations)-Eligible Patients

I don't understand, did gluing the AVM really work? Secondary outcomes of death or stroke really are quite significant.
https://www.ncbi.nlm.nih.gov/pubmed/29114088

Singfer U¹, Hemelsoet D¹, Vanlangenhove P¹, Martens F¹, Verbeke L¹, Van Roost D¹, Defreyne L².

Author information

Abstract

BACKGROUND AND PURPOSE:

In light of evidence from ARUBA (A Randomized Trial of Unruptured Brain Arteriovenous Malformations), neurovascular specialists had to reconsider deliberate treatment of unruptured brain arteriovenous malformations (uBAVMs). Our objective was to determine the outcomes of uBAVM treated with primary embolization using ethylene vinyl alcohol (ONYX).

METHODS:

Patients with uBAVM who met the inclusion criteria of ARUBA and were treated with primary Onyx embolization were assigned to this retrospective study. The primary outcome was the modified Rankin Scale score. Secondary outcomes were stroke or death because of uBAVM or intervention and uBAVM obliteration.

RESULTS:

Sixty-one patients (mean age, 38 years) were included. The median observation period was 60 months. Patients were treated by embolization alone (41.0%), embolization and radiosurgery (57.4%), or embolization and excision (1.6%). Occlusion was achieved in 44 of 57 patients with completed treatment (77.2%). Forty-seven patients (77.1%) had no clinical impairment at the end of observation (modified Rankin Scale score of <2). Twelve patients (19.7%) reached the outcome of stroke or death because of uBAVM or intervention. Treatment-related mortality was 6.6% (4 patients).

CONCLUSIONS:

In uBAVM, Onyx embolization alone or combined with stereotactic radiosurgery achieves a high occlusion rate. Morbidity remains a challenge, even if it seems lower than in the ARUBA trial.

© 2017 American Heart Association, Inc.

UHN reseachers identify genetic basis for the formation of abnormal blood vessels in the brain

In case you are wondering about your AVM.
http://www.uhn.ca/corporate/News/Pages/UHN_researcher_genetic_basis_formation_of_abnormal_blood_vessels_brain.aspx?

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1/4/2018

New research by Drs. Ivan Radovanovic (L) and Jason Fish identifies a possible genetic mutation that causes brain arteriovenous malformations and could lead to treatment for the illness. (Photo: UHN)

The reasons why malformations occur in blood vessels remain a mystery, but it’s a fact that sometimes, in this carefully orchestrated process, things can go wrong.
The result is an Arteriovenous Malformation (AVM), an abnormal tangle of poorly formed blood vessels. AVMs can occur anywhere in the body, but are of particular concern when they occur in the brain because of the damage they can cause if they bleed or rupture.
There are different types of Brain Arteriovenous Malformations (BAVMs) and some rare forms occur in patients with inherited genetic disorders. However, most occur randomly in the population, known as sporadic BAVMs, and these generate more questions than answers.
So what causes this type of sporadic malformation? How do the many arteries and veins that make up blood vessels spontaneously start to tangle?
There have been many theories, but the genetic cause was unknown until now.
In a study published in the New England Journal of Medicine, Dr. Ivan Radovanovic from the Krembil Research Institute, Dr. Jason Fish from the Toronto General Hospital Research Institute, their research teams, and collaborators in Switzerland and Finland, identified, for the first time, a genetic basis for the formation of these abnormal blood vessels that are the leading cause of hemorrhagic stroke – bleeding in the brain – in young adults and children.
"We think that sporadic BAVMs are not present from birth but occur sometime after," says Dr. Radovanovic a neurosurgeon and scientist and co-principal investigator of the study.
"Identifying the mutations that cause this disease and showing that they only occur in the abnormal vessels forming the BAVM, but are not present in other cells of the patients body, allows us to understand how BAVMs are formed and why they are not inherited.
"This discovery also establishes therapeutic targets to treat BAVMs," he continues. "The next step will be to test drugs in the laboratory and in pre-clinical models that reverse the effect of these mutations in brain vessels. In the future, we may envision clinical trials that will test drugs that can help manage this condition in patients."
Though BAVMs are rare – occurring in roughly one per cent of the population – their inherent risk of bleeding is high over a patient's lifetime, which is a dangerous characteristic considering BAVMs often go undetected for many years. If they do bleed, they can cause permanent damage in the brain. Approximately 50 per cent of BAVMs that bleed can result in permanent disability or death.
"Even if they don't bleed, AVMs can cause seizures or other stroke-like symptoms," says Dr. Radovanovic. "Furthermore, in some cases, patients aren't always good candidates for the few treatments that are available, such as surgery, embolization or radiation.
"So it's really a condition that demands other options, and understanding its cause will open the door to other possibilities."
To identify the mutation, Dr. Radovanovic and his research team began by performing exome sequencing on the DNA from BAVM tissue that had been removed surgically as part of standard treatment for the condition. Exome sequencing is a technique to read all the protein-coding genes in a genome – the patient's DNA.
The process showed the genetic changes occurred in a gene known as KRAS. Dr. Fish and his research team then showed expression of mutant KRAS alters signalling pathways that in turn disrupt the normal migratory behaviour of endothelial cells – the cells that form the inside lining of blood vessels.
These altered cellular behaviours may be a key feature for BAVMs to develop. The mutation was found in over 60 per cent of the 72 patients with abnormal blood vessels in the brain that were part of the multi-centre study.
Interestingly, the study also identifies this same mutation/activation pathway as a potential target for drug therapy. As KRAS mutations have been shown to be involved in many cancers, such as colorectal, lung and pancreatic cancers, existing cancer drugs developed to inhibit this mutation could be tested as a possible treatment.
“These findings are really the foundation of many possibilities to better understand, manage and treat BAVMs,” says Dr. Fish. “It’s a very exciting time in this area of research.”