Great idea!

[keps]

I think this forum is a great addition to the CareCure site.
My own cause of SCI was a spontaneous bleed, it would be good to hear from others who had no traumatic cause of their SCI.

[Leif]

Intraspinal Arteriovenous malformation Th4-Th8.

[Sue Pendleton]

I think this forum is a great addition to the CareCure site.
My own cause of SCI was a spontaneous bleed, it would be good to hear from others who had no traumatic cause of their SCI.

For me an idiopathic (no known cause) spinal infarct at the C4-5 level. Now, functionally and sensationwise a C5-7 incomplete.

[Kristi]

Rock on Wise...guess ya did decide to put up a TM and Atraumatic thread to the bunch. I think it is a good decision and maybe more people will look here for answers. 10 years out and am still looking for some answers.

T2 to T4 Transvese Myelitis from a Lupus flare. Struck within minutes. Woke up 4 days later from a coma without the use of my legs.

[keps]

Rock on Wise...guess ya did decide to put up a TM and Atraumatic thread to the bunch. I think it is a good decision and maybe more people will look here for answers. 10 years out and am still looking for some answers.

T2 to T4 Transvese Myelitis from a Lupus flare. Struck within minutes. Woke up 4 days later from a coma without the use of my legs.

That sounds terrifying.
In my case, I had huge chest pain, then I was suddenly paralyzed. Literally one second I could feel my legs, a second later they were totally gone. It was so quick, I actually tried to stand, but fell as I suddenly couldn't use my legs. I had a nice fall as a result!

I didn't realize that transverse myelitis caused paralysis so quickly, before I found out more on this site.

[Leif]

T2 to T4 Transvese Myelitis from a Lupus flare. Struck within minutes. Woke up 4 days later from a coma without the use of my legs.

Its terrible to read about things like that you guys describes, like it can struck within minutes or even seconds like keps is writing. And not knowing what is going on must also be scary. And this can happen to anybody just like that? Don’t think healthy people know how luck they are and not knowing what is going around out there. – In my case I could see it coming against me for 2-3 years. I could “see” the wheelchair coming closer and closer. It was like my “accident” was in a super slow movie. That was also a bit scary I must say. I did try to fight against it by all means but for the time being it seams like the chair did win. I am T4 Incomplete now.

Leif

[keps]

I think it is different than if you have an accident.
I mean, I was in shock after it happened to me - I'd never heard of a bleed on the spine, and I didn't understand how it could have happened so quickly (my bleed was massive, apparently - maybe that's why the paralysis was so quick).
I think I would've coped better initially if it had been an accident - a tangible reason.
But now, I think at least there is no one to blame for what happened to me. Nothing could have prevented my paralysis.

[Leif]

I agree with you, - the tangible reason. Like in my case I did not get the shock experience, it kind of developed over time. Above that the risk was also for me that I could have had a bleed and an infarct to the spine actually when I was healthy and walking. Lucky me I did not have a bleed and fortunately the surgeons did manage to remove my avm before it totally paralyzed me. When it comes to a bleed I know a few peoples in the US that I am in contact with that actually had a bleed from their rare lesion that avm’s are. I did not know about TM before I looked up this site and that seams even more strange than avm’s. Back to tangible reasons. In one way I am glad that I don’t have a tangible reason like a high speed car or motorbike accident is, this is because often then the person also can have major damage to the bone structure in the spine. But after my surgery they treated it like an accident, I got the steroids to prevent swelling etc. and also had to stay for some time at rehab.

Leif

[keps]

I don't really understand what AVM's and infarcts are.
What happened to me was called a Spontaneous Spinal Extradural Haematoma.
The doctors told me that they had no idea why it had happened to me.
They also said that the bleed just suddenly occured that day.
So it was a total shock to me wehen this happened, as I had no idea it was coming. I think I'd've coped better with it if I'd have known what would happen.

[lynnifer]

TM here too

Struck within seconds as well - tried to stand and fell. Twenty years ago today at age 12.

[anty]

Tm

yes i have trans verse mylitis happened in 5 minn could not move anything from chest down. Now its been almost 4 yrs left c5 c6 incomplete. anty

[Leif]

I don't really understand what AVM's and infarcts are.

A spinal arteriovenous malformation (AVM) is an abnormal tangle of blood vessels on, in or near the spinal cord. The arteriovenous malformation causes spinal tissues to be starved of normal amounts of oxygen, and the cells that make up these tissues begin to deteriorate or die. The abnormal group of blood vessels (the AVM) may rupture and cause a spinal hemorrhage. Rarely, the AVM may become larger and compress the spinal cord.

- Seams like there are lots of rare disorders that can have serious effect on the spinal cord; like some of you writes about; TM and SSEDH, I’m sorry to read about all this. Leif

[keps]

Leif,
thank you for the explanation. Now I understand better what an AVM is.

[Wise Young]

Leif,
thank you for the explanation. Now I understand better what an AVM is.

Keps, Leif explained it well. I just want to point out one other factor that contributes to the ischemia produced by an arteriovenous malformation (AVM). In an AVM, an artery connects directly to a vein. When this happens, not only does the blood not pass through the tissue via capillaries, as it should normally, it also increases venous pressure. Like all fluid flows, the pressure gradient between two points is the main reason that fluid moves. When venous pressure increases, there is less driving force for blood to move. The increased venous pressure also enlarges the veins. Most people with spinal cord AVMs have enlarged and tortuous veins on the surface of their spinal cords. If the venous expansion is significant, it may also compress the spinal cord. However, the main reason for decreased blood flow in the spinal cord is due to the vascular "steal" and the increased venous congestion that occurs.

Wise.

[Sue Pendleton]

Keps, Leif explained it well. I just want to point out one other factor that contributes to the ischemia produced by an arteriovenous malformation (AVM). In an AVM, an artery connects directly to a vein. When this happens, not only does the blood not pass through the tissue via capillaries, as it should normally, it also increases venous pressure.
Wise.

I think these kind of AVMs are also more likely to occur in the brain. Wise, am I correct on this?

And Keps, with ischemia (spinal infarct) also I had the killer pain in the bends of both elbows. A few minutes later my fingers refused to move and then my hands. After that muscles from my chest on down quickly disappeared and my body felt numb. It was somewhere between the 2nd and 3rd hour that I started turning blue around the lips and was intubated. Leif, I also received steroids and a lot of inpatient PT and OT. I spent 7 days pretty much in an induced coma to keep the breathing machinery in. Or the German docs said it was induced. I have never had a test, and I've had a ton of tests, show I was deprived of oxygen to the brain so I tend to believe them.

Psychologically I believe it is easier to deal with such massive life changes if something tangible happens. I was perfectly healthy one moment and the next some invisible horrid thing was driving railroad spikes into my elbows.