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AVM Survivors Network

My Spinal Dural AV Fistula

There was no event that caused the SDAVF. On minute I was fine, the next I know there was weakness in my legs. Never felt anything like it. Such an odd experience. I called the ‘on call’ nurse for my insurance to ask what I should do. Not really sure what they said. Suddenly I am on the floor with massive lower back pain; blinding pain. After it subsides, my wife bundles me into the car and takes me to the emergency room.
In the ER, I discuss with the docs about the pain and everything. They have me stand up, walk a bit. I sit back down on the bed and fire shoots from my lower back down my left leg. The feeling of my leg on fire builds as it goes from the outside of the leg down to my foot and then back up the other side, into my groin and buttocks and then starts down the back of my right leg, but stops just below my right cheek. After the fire, I can’t feel any thing on the left side of my body below the belt. I look down at someone else’s leg. I can’t move it, I can’t feel it.
My wife is standing above me, holding my hand, looking me in the eye the whole time. I don’t remember what I said to her.
Thank god for my wife. Not only is she in medicine, the woman is a rock. Stone cold under pressure. No hysterics, no freaking out. 100% present.
I spent a week in the first hospital. I was completely maxed out on pain medication. Everything is fog. I vaguely remember being in an MRI. Turns out I spent a total of 15 hours in the MRI. Scanned from tail bone to the top of my skull looking for answers.
At the end of the first week, the Neurologist comes in and tells me I have M.S. My wife looks the Doctor and says "thank you for your diagnosis, but I want to move my husband to the hospital I work at. The doctor leaves. My wife looks at me and says, “You don’t have M.S.”
Like I said, the woman is a rock.
New hospital, new doctors. More MRIs. They told me I racked up a Total time of 17 hours in the GE Exicite 1.5T MRI machine. Days go by. No one knows what is wrong. For a teaching hospital, my case is red meat. Teams of Doctors stop by; young, old, some in training, some close to retirement, some just to see what the excitement is about. One day a Neurologists sees something on my MRI. A “smudge” in my lower spine, not sure the exact location. More tests ordered. A total of one pint is siphoned off and “scienced the shit out of”.
A new test is ordered. A “procedure”. It was described to me as sticking a tube into my groin artery and extending the tube through the various arteries of my body until it stops near where the smudge on the MRI was in my spinal column. At that point, they will inject radiation and a whole host of other things to see what they can see. It’s called an angiogram. I’m first up the next morning.
Later that night, two serious looking doctors come in to my shared room. They look like they just came out of surgery. They’re on autopilot. I see it in their faces.They don’t say a word to me at first. One gently rolls me on my side, the other does something and tells me to bear down, like I am trying to poop. They roll me back over, go over to the computer, open up my chart, type something in. Then they leave. Like apparitions in the night. Night stalkers.
The angiogram confirms the theory; SDAVF. There is good news and bad news. The Fistula has clotted by itself. The bad news, the vein is still horribly distended and pressing on the spinal cord. New medication is prescribed. Feeling starts coming back to my left side. I can raise my leg. But I still can’t feel it. There is hope.

TWo years on I have significant nueropathy in my left leg/foot, burning in my left buttock and part of the right. The pain is intense enough that I can’t sit for more then 20 minutes before pain drives me to stand. Am on multiple pain meds. For long trips, I bought a foam pad and I lay down in the back seat. Went through physical therapy to learn how to walk again, and walk with a walking stick. My left leg buckles so I have to deal with that. Am mostly incontinent.
Unsurprisingly I have PTSD from the whole thing.

-TLDR-
My SDAVF came on without warning. Paralyzed me on the left side from the waist down. Two years on with physical therapy I can walk with a walking stick. Have nueropathy and intense pain on left side below belt. Am mostly incontinent. PTSD.

Ash,

Welcome to AVM survivors! I read your profile a few weeks ago when you joined us but it’s great that you’ve posted your story! Wow! You’ve been through a lot and I can understand the PTSD.

We have a @Spinal group. Much of what you describe will be familiar to them (unfortunately!) Equally, if any longer term progress can be made, they will know better than me.

It’s great to hear from you and I hope you are able to share a little support to and from others.

Very best wishes for the year ahead,

Richard

Hello, and welcome to the AVM Survivors Network … Spinal Edition!

I think you’ll find this Community a great source of information and support. And if you haven’t noticed already, each of our stories are unique with the only commonality being that of falling under the umbrella of suffering an AVM. To be more specific, in our cases, a SDAVF.

You’ve probably also noticed there aren’t a lot of @Spinal members. We are a rare breed indeed.

I certainly don’t know your whole story, only what I have gleaned from your post and profile, so parts of the following may or may not resonate in your particular instance. So based solely on what you have provided as information, here are my initial observations.

According to the collective research concerning SDAVF’s (which is relatively recent and far from exhaustive) the mean demographic suffering symptoms of a SDAVF is a male in his 5th to 7th decade. You fit the demographic.

My research shows the onset of symptoms can be gradual (as in my case) or sudden (as in your case). There seems to be no definitive reason why the symptoms manifest differently. HOWEVER, you mentioned “the fistula has clotted by itself". The term “clotted” in my mind indicates something bled, and you said the “vein is still horribly distended”. Not surprising.

The very nature of the SDAVF has an artery directly shunting into a vein. The arteries are a high-pressure delivery system and walls of the arteries are built to withstand that pressure. Veins, on the other hand, are a low-pressure system and the vein walls aren’t made to handle arterial pressure – so under pressure they enlarge. The walls stretch but if there is sudden extra arterial pressure (strenuous workout for example) or just a weak spot in the wall, it could burst. That sudden “bleed” could have immediate dire effects and might be an explanation for the initial chain of events you experienced. Once that pressure was relieved, the site of the rupture would relax a bit and then the body would do its’ thing and start the repair process by clotting. I’m not saying that’s what happened in your case – just a possible explanation. “Bleeds” as a result of an AV Fistula are uncommon but not unheard of, and you might have heard the terminology attributed to untreated SDAVFs as someone with a ticking time-bomb strapped to their spinal cord. It’s for that very reason – the risk of a “bleed” is high and any cause for a higher than normal blood pressure could trigger an event.

You stated you are now two years post onslaught. There is no mention of any further medical intervention regarding the fistula. That is troublesome in my mind. That leads me to believe the fistula still exists (‘cuz they don’t go away on their own!). You may very well have been one who had gone through life with a SDAVF and the symptoms were of such a minor nature the cause would have been attributed to something else (SDAVF’s are notoriously misdiagnosed) and except for the “bleed” may never had been diagnosed. But the enlarged veins compressing your spinal cord, and in turn causing it to swell which in turn is causing all your neurological difficulties and deficits, won’t subside as long as arterial blood pressure is shunting directly into the venous system.

In my case, it took eight years to discover the SDAVF from the time I became symptomatic. In the latter months leading up to the correct diagnosis, my symptoms were escalating exponentially. I was assured by my Neurovascular surgeon that without immediate medical intervention I would suffer complete paraplegia.

Speaking of Neurovascular surgeons, if you haven’t consulted with one, (and I hope you do) find one who is well experienced in treating AVM’s and in particular SDAVF’s (mine was trained by the very best in North America at the Barrow Neurological Institute in Phoenix). Then get a second opinion (If it were me I would again defer to the expertise at Barrow’s). I’ve included a link. Remember, what you are currently suffering are neurological ramifications due to a vascular cause. You need a specialist competent in both aspects.

Barrow

Get a Second Opinion | Barrow

We offer second opinions for brain tumors, spine surgery, aneurysms, pituitary tumors, acoustic neuromas, and metastatic brain tumors. Learn More

As it has been two years, you might consider having another complete spinal MRI done. At the same time have an MRA done (they can be done at the same time). The signals relay different information within the scans and ensure the results are interpreted by a qualified Interventional Radiologist.

I can certainly empathize with the neuropathy and pain you are experiencing. Mine is bilateral rather than more on one side. I’ve tried so many meds I’m sure my insurance company must think I’ve signed up to be a professional drug tester. None of them came even remotely close to relieving the nerve pain. But just recently (5 days) I have been taking Gabapentin which has reduced the groin and thigh pain to a point where the pain is not causing my legs to buckle as severely. I’m in the early stages of this particular medication but so far it has been the only prescription that has come close to providing any relief. We shall see!

That’s probably enough for my initial thoughts. I’m sure (I hope) others from the @Spinal Group will chime in.

And once again Welcome! Don’t be shy. Feel free to reach out anytime. That’s why we are here.

Brent

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Dear All,
I am also a Spinal Dural AV Fistula survivor. My laminectomy at T10 was performed on 29 October 2015. Please read my profile and subsequent updates regarding my problems during post surgery rehabilitation.
Greetings from Melbourne - Australia,
Franz

Welcome Ash. It has been almost 2 years since I had my AVM removed from T9-T12 and I continue to improve. I don’t feel like I am being “cured” but I do feel like my symptoms are less intense and parts of me feel alot less pain. It’s hard to explain, but I’m sure you understand.
I wish you all the best in your recovery and I agree that if you have not seen a specialist that can treat AVMs, you should. My doctor works out of Henry Ford, West Bloomfield Michigan. Dr. Malik. He teaches others how to treat AVMs as well as treats them himself. He’s getting up there…mid 70’s…so he has a team he is training but he is one of the top doctors.
PTSD…yes…it is difficult some days to deal with the fact that this has happened to me, but I am thankful to be alive and able to walk.
Best Regards,
Joanne