Friend diagnosed with Spinal AVM - some questions and asking for advice

Types of Avm's Spinal AVM
1

Hi everyone,

I am the caregiver for my lifelong friend, Jerry, who was diagnosed with a suspected spinal AVM this week. For more context, he has no motor function below the waist, fecal incontinence (complete loss of sphincter control), and urinary retention. He can’t move his legs or feet but has sensation with numbness.

After a hospital transfer to the brain and spine center at Providence Sierra in El Paso, TX (that is closest to our home). If we need a second opinion, we think we should reach out to the Barrow Institute in Phoenix (but that’s obviously down the road). They did their first angiogram yesterday, where they checked the brain (both sides), cervical (both sides), and part of the thoracic (right to T12, left to T6). They didn’t see anything in those regions, so they plan on doing another angiogram to check the remainder of the thoracic and full lumbar region. There is no mechanical compression in two MRIs, but it shows abnormal spine signals from T6 and below.

Jerry’s initial symptoms started in Feb 2024 with leg numbness and urinary retention. The symptoms were inconsistent and sporadic. And obviously, there were efforts to rule out cardiovascular, urological, and endocrine causes. He started Physical therapy in August and September, which helped a little. In December, he began noticing bouts of more weakness, especially after a significant bowel movement and prolonged standing. We then started the Neurological avenue. Eventually, this brings us to February 11, where he was going an L4-L5, L5-S1 right side epidural injections as a longshot. Within 90 minutes of those shots, he was paralyzed with the symptoms described above. Then, he had some fecal urgency a few times in Spring. As we got into the winter, his leg weakness got worse after large bowel movements (he’d lose function for 60 minutes to half the day). Then, last week, after an epidural in his lumbar spine, he lost all motor function below the waist.

I went through a rare cancer diagnosis myself 2 years ago and found these support groups very helpful. Since this is such a rare diagnosis, some of the questions we have for this community are:

  • What are we not asking that we should be asking?
  • How long did you have to wait between angiograms?
  • When did you start physical therapy? What did you find most helpful for recovery?
  • What are the key questions to ask in this stage of the process?

Thank you all so much for your support!

2 Likes
2

Just wanted to say a quick hello, and welcome. I had a brain AVM, so quite different so can’t offer much in the way of personal experience. Hopefully the next angio answers some of the questions for you. Take Care, John.

3

Hello there. Your friend Jerry is so lucky to have you to advocate for him. I can’t express enough how sorry I am for what he’s going through. He’s been through a very tough road. I feel like many of us diagnosed with spinal AVM have similarly long paths to diagnosis, including baffled specialists and “wasted” time with physical therapy before diagnosis. I have a theory that age is a factor in difficulty getting to correct diagnosis. But Jerry’s situation sounds especially egregious. I’m not familiar with the epidurals. For me, the doctors already had a sense of where the AVM was from MRI so they located it right away with the angiogram. I didn’t have to have a second angiogram. After angiogram / embolization, I eventually had open surgery (laminectomy) which successfully cauterized AVM fistula at T11. That was back in 2018. I went into rehab / physical / occupational therapy right after the embolization / surgeries. I kept going to physical therapy for a year or so after that. What did I find most helpful for recovery? To be my own best advocate. No one seems to understand what’s going on with my body as well as I do. I also follow “Mason Branstrator” on Instagram - He is a very positive young guy who shows what a fulfilling and meaningful life he has in a wheelchair. The University of Washington also has really wonderful videos on YouTube about living with spinal cord injury. I use Always Discreet (I call it “incontinence underwear”) whenever I travel. Still, I’ve had #2 poop accidents in my mom’s car, my husband’s car, my friend’s car, my sister’s car. I like to carry around a pair of underwear and extra pants just in case. I’m working on overcoming shame involved with disability. I think it’s helpful to read books about disability rights, and videos like “Crip Camp” on Netflix are really empowering. You are a wonderful friend ! Please feel free to reach out with more questions!

2 Likes
4

Hi there,
It sounds like you are a wonderful caregiver. And I’m so sorry your friend has gone through this. My daughter was diagnosed with a spinal AVM from C2-C7 and had undergone cyberknife treatment after several bleeds. My biggest recommendation I can offer you is to also get a second opinion/consult with Stanford Medicine. In addition to Barrows in Phoenix, those were the two most valuable resources for us.
I wish you all the best and I’m sending healing energy your way!
Warm regards,
Beth

1 Like
5

I can’t say enough good about Barrows! My husband had his surgery there for a cavernous angioma on the brain and spinal AVM fistula. They save his life twice.

  • What are we not asking that we should be asking?
  • How long did you have to wait between angiograms? He had an angiogram done and then they ordered another extensive one and he went to surgery within 8 days. Surgery was a success and stopped the fistula… however he went one year misdiagnosed… damage was done and he is now left
    With waste down paralysis
  • When did you start physical therapy? What did you find most helpful for recovery? PT began immediately… biggest help was getting in the pool.
  • What are the key questions to ask in this stage of the process? Do the Barrows online second opinion of you can. There is a fee but you would upload all medical records, X-rays etc… they will advise you with their opinion of treatment.
    [/quote]
6

When they thought in the beginning that my husband just had a “bad back” (by local orthopedic) they had him scheduled for an epidural. We by luck had a second opinion scheduled in Las Vegas. That doctor was smart enough to see that his back was not an orthopedic problem and refered my husband to the ER asap in Las Vegas. After 47 days in hospital they diagnosed him with Transverse myelitis!! Big wrong!! Long story short- we went to barrows and the transverse myelitis special said the medical field had failed my husband… it in fact was the SDAVF… surgery was immediate. It’s been a long road for sure. As of mar 1 it will be 4 years since admitted to hospital in Vegas. 3 years since surgery. This often goes misdiagnosed as it is so rare. He happened to be lucky and have Dr Lawton as his surgeon. Truly grateful but now we navigate a new normal of paralysis. My husband has been able to retain bowel just fine but has to cath now. He did get some bladder PT training and it was a game changer.
We also have done Scifit exercises therapy… they are amazing!! In Texas we explored the Bachik method out of Dallas area… worth checking their website and instagram. .

1 Like
7

Hey everyone,

Some important updates—after further imaging, the doctors confirmed that what was initially thought to be an AVF is actually an SDAVF located at L2. This was a key discovery, as it allowed them to pinpoint exactly where to operate. Jerry was transferred to the University Medical Hospital Cath Lab in El Paso, which is better equipped for this delicate procedure.

Yesterday afternoon, the team successfully located and embolized the SDAVF, which was the best possible outcome! He will be in the Neuro ICU for the next 48 hours to recover. There’s no change in motor function yet, but that was expected—it’s going to be a long road ahead. Next, he will meet with rehab specialists to create a recovery plan.

Jerry is feeling relieved and grateful that this was caught in time. Thank you all for your continued support!

2 Likes