Mobility supports for 62 year old spinal AVM survivor

Types of Avm's Spinal AVM
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My father had an AVM in the lower part of his spine in 2002 and after multiple surgeries and treatments was able to regain his walking.

But now, he is 62 years old and his spasms are getting much worse, even with a cane he is struggling to walk. He is also getting very weak and is unable to walk even in the home.

Does anyone know is there are any treatments or mobility supports so he could try to a. Manage his spasms, and b. Be more independent to move around without ppl needing to help him.

We would appreciate any advice or experiences you could share of how others have managed it. He has an incredible power of mind that has helped him get through it and be independent all these years, but as he ages we are looking for another way he can still be confident to leave the house on his own.

Thank you for reading this.

Razia

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Razia, thanks for joining us and welcome. I hope we are able to help you out in caring for your dad. I was a brain AVMer so quite different, but do have several friends who assist people with mobility issues. Often a first point, in Canada, will be to an Occupational Therapist, these folks are trained in just what you describe to assist people. It may be mobility aids, changes in the home or workplace. I know some folks also attend physiotherapy, and develop daily exercises, often focused on the smaller support muscles. These OTs are connected to a wide range of services and I imagine similar is available in your country.

On a similar note as I often try naturopathic options, usually as supplement to medical treatment, a variety are available, soaks, baths etc, and one a friend of mine utilizes is CBD baths. He swears by them. I known I wasn;t a lot of help but I imagine some of out community folks will pass along there knowledge.

Take Care,

John

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Hi, Razia:
I had an AVM–a Spinal Dural Fistula–removed from my spine (T4 level) in 2008. I regained the ability to walk after the laminectomy, although I had residual symptoms, tingling, numbness, etc. in my legs. I was in my early fifties back then. All in all, I regained 90% of the function I had lost.

In 2023, however, when I was in my late 60s, I began losing function again. Over 3 years, I went from walking independently, to using a cane, to using a walker. After 2 angiograms, and multiple MRIs, all my doctors could tell me was that I was “getting old” and losing the function I had regained after the operation.

However, in my opinion, a diagnosis of old age is less a diagnosis than an admission of ignorance.

What is the mechanism? What is the causation? If you can’t say, you don’t know.

This was borne out around 4 months ago, when in the space of an instant, I regained 20 or 30 percent of the function I had lost. This proved to me something was going on in my spine that has not been identified. Right now I’m looking for a doctor who will work with me to find out.

In the meantime, I bought a treadmill, and have worked up to 30 minutes a day. I suspect that a lot of my current weakness is due to muscular atrophy caused by not walking for 3 years. Use it or lose it.

Right now I’m 70. I hope to be walking again by the time I’m 71.

So help your father keep looking for an answer. He needs a doctor who will advocate for him to find out what’s going on in his spine. It’s not old age. It’s something else. Keep on looking. Get a care team together to FIND A SOLUTION!

I pray that your search will be successful.

Best wishes,

David H.

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Hi John,

Thank you for sharing your story and I’m glad you have been able to find care options that work.

Would you recommend any rehab clinics or specialists we could reach out to?

Warm regards,

Razia

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Hi David,

Thank you for sharing, yours is an inspiring story of not taking no for an answer.

We have been to many professionals around the world including neurologists, urologists, physiotherapists and still haven’t been able to get to the bottom of it or find a solution that can improve his life. I’m afraid my dad is becoming tired and losing hope that there is a solution for him out there.

Would you suggest a specialist in the field or a rehab clinic that has experience in these types of cases who you’ve found helpful?

Warm regards,

Razia

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Hi, Razia:

I wish I had a suggestion as to a specialist/clinic for you, but I don’t. I’m still in my own process. You might try contacting Weill Cornell in NYC, which I just did. Sent my recent MRIs to them, and now am scheduled to see them next month. Or better, ask for advice from the mods on the Survivors Network. I did that last year, and got a lead to Barrow Brain and Spine in Phoenix, who treated me really well, and did a thorough angiogram, which proved without a doubt that my current problems are NOT the result of an AVM, although they couldn’t figure out what it was.

I wish I had better advice. I suggest your dad get into emotional therapy to help him keep going. I speak to a therapist every couple weeks to keep me emotionally balanced during this long, hard process.

All best,

David H.

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