Maybe someone here can help?

My name is Dennis Tesolat and in August 2009 I suffered an acute spinal subdural hematoma leading to paraplegia. The probable cause was an AVM.

Since that time, I've just treated myself as a spinal cord injured person (which I am) and have pretty much forgot about the AVM and focused on the paralysis. I write a blog about a cure for paralysis at www.StemCellsandAtomBombs.blogspot.com, and have been told that in the case of an AVM leading to paralysis the damage is very localized meaning that we have loads of myelinated axons left. Could be just the neuron damage at the point of injury (AVM explosion).

Anyhow, just recently at my hospital, there was another paraplegic guy there and they found an AVM, took it out, and now he's walking and has regained bowel, bladder function. He's not running or anything but I'm in a wheelchair still.

After that both my doc and me started to think about whether we should get my AVM checked out.

I was wondering if I could here from anyone that's also been paralyzed by an avm and what their experiences are. I'm new to this site and to the world of AVMs so I would really like to hear other people's experiences.

Oh! with a bunch of others, we're putting together a group of activists to fight for more clinical trials and research for spinal cord injuries. If you're interested in helping, please have a look at http://stemcellsandatombombs.blogspot.com/2011/06/commitment-test-run-for-future-activity.html or http://stemcellsandatombombs.blogspot.com/2011/05/when-people-learn-to-spit-together.html or http://stemcellsandatombombs.blogspot.com/2011/05/time-for-manhattanapollo-project-to.html.

I hope to hear from you all.

Thank you,

Dennis

Hi Dennis,

Welcome to the site.

I have an intramedullary spinal cord AVM and aneurysm at the C-7 to T-2 levels. The AVM ruptured in 2002 and while I wasn't paralyzed it did do quite a lot of damage to my left side. So I have an SCI too. The spinal cord doesn't know the difference between a diving accident or an AVM rupture - a spinal cord injury is a spinal cord injury, whether it's an traumatic injury or not.

I walk, usually with the aid of forearm crutches, though I do alright around the house either without anything, or a cane or holding on to furniture, etc.

Removing the AVM and/or aneurysm would be too risky for causing me to be a quad, so that is pretty much off the table, unless I have another bleed (I've been told). They were both embolized in 2006, and while the aneurysm remained, the AVM was 'obliterated'. However, my symptoms were not alleviated by the procedure and they spread to other areas of my body when it was performed.

In the last year and a half or so the symptoms have progressed a little, and I had two more angios in Sept. 2010 and in April of this year - 6 mos. apart. It was discovered in Sept. that the AVM has grown back, and another embo was attempted in April, but they were unable to get into the AVM. So it is now active and untreated, again.

I know that a lot of people who have spinal malformations have been able to regain some, or even sometimes all, function that was lost from having a bleed after having surgery, or even embolization. I think a lot of that depends on things like the location, size, shape, and how much damage has been done to the cord if there has been a bleed. For an AVM that hasn't bled but is putting pressure on the cord, it's very possible for deficits to 'clear up' after surgery or embolization.

Have you had an angiogram to determine whether or not you actually have an AVM, and where exactly it is located, etc? If you haven't, you might seriously want to talk to your doctor about it as it is considered to be the definitive, or 'gold standard' test for diagnosing AVMs. I think if your doctor suspects your paralysis could have been caused by an AVM that would be a logical step.

Let us know how you progress with having your AVM checked out. And I'll check out your links too.

Take care,

Tori

Thanks for the reply. My doctor at rehab now is pushing for a real angio, catheter and all.

My second surgeon (I had two because I had an arachnoid cyst that formed after the first operation) doesn't believe it was an AVM, but I don't know why. He let me have an MR angio which showed nothing and my rehab doc said, 'If an MRI finds the AVM it's there, but if it doesn't find and AVM, it doesn't mean that it's not there." My own reading seems to show me the same thing. I think I will get one.

Regarding our spinal cord injury, I wrote a very tongue and cheek type post on my blog about it: http://stemcellsandatombombs.blogspot.com/2011/03/theres-no-cool-way-to-suffer-spinal.html

Some may not appreciate it, but it was how I was feeling about it on that day.

Hi Dennis, I had radiosurgery(20 grades level on Nov 2009) for spinal avm(unruptured) at T12, and will do a MRI and/or angiogram at the end of the year. On crutches.

Regards

Chui

I don't know how to answer. For me being on crutches would be fantastic as it beats the chair. How are you doing? How was your condition before the radio surgery. I hope you're doing well, and I hope that we all walk well soon.

Cheers,

Dennis

Hi Dennis

I am doing fine and is exploring if embo is an option, if not I guess I have accept life on crutches, where is yr avm location in the spine? and how big is it?

Chui

Hi Chui,

I don't even know if I have an AVM but the hemorrhage was at Th12. When it first happened the did offer to do an angio but I said no because they scared me about the chance for a stroke. Now I really want to know and the doctors are talking about doing it. I don't know if it's strange for me to WANT them to find it or not but I'd now really like to find out WHY I'm paralyzed, and also the feeling that maybe if they find it and embolize it, I may get some functional recovery. We'll see.

Hi Dennis

Angiogram do have a small risk of stroke about 3% I think, but it is the golden standard to reveal the condition of avm or a full diagnosis. Do make sure you exercise your legs so as to prevent muscle wastage. I walk on crutches for close to 1-1.5 hrs a day, no afo and no foot drops in my case. Hopefully, embo can help me or some other new treatment, it the meantime, I have to keep my legs strong for a long time.

Chui

I also use a standing wheelchair for about two hours a day, and I find that that has helped stopped losing muscle volume in my legs. We’ll get there.