View Full Version : Great idea!
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.
Intraspinal Arteriovenous malformation Th4-Th8.
Sue Pendleton
07-28-2005, 11:50 PM
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
07-29-2005, 02:03 AM
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.
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.
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
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.
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
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
07-29-2005, 11:09 AM
Struck within seconds as well - tried to stand and fell. Twenty years ago today at age 12.
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
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
Leif,
thank you for the explanation. Now I understand better what an AVM is.:)
Wise Young
07-30-2005, 09:14 AM
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
07-31-2005, 01:14 AM
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.
I think these kind of AVMs are also more likely to occur in the brain. Wise, am I correct on this?.- AVM’s can occur in the brain as well, they can occur anywhere in the body, anywhere there are blood vessels. There are also several types of them and it is not uncommon that they can occur in the spinal cord – and that is definitely one place we don’t want to have them. Sometimes AVM’s in the brain can be easier to deal with – easier to access them. I have also read about people who have them in the brain; sometimes they can actually hear the gurgling noise when the blood flow is going trough the AVM.
I was perfectly healthy one moment and the next some invisible horrid thing was driving railroad spikes into my elbows.Many years ago (-87), long before the physical problems with the AVM occurred I did have one incident which I later am sure had to do with the AVM. I was sitting on an airport waiting for my flight for going to work and then out of nothing came a pain in the chest like I was stabbed by a knife, it was very painful and I was sure I was going to die, got problems with breathing etc. The doc’s did all kinds of tests but did not find anything. I got better and did not have any problems until many years after. What I believe happened here is that it must have been a nerve that was pinched by the growing AVM. This must have been one of the nerves controlling the chest area over T4 where they did find an AVM many years later. Thanks, Leif.
Is an AVM similar to spontaneous spinal extradural haematoma, or are they totally different?
I know how bad the pain can be from a bleed. Mine was so enormous, I actually started stabbing my hand with a needle to take my mind off it(and failed), I also tried to burn my chest with a hot water bottle I happened to have. I know all that sounds ridiculous, but the pain was absolutely phenomenal, and I was utterly desperate.
keps,
spontaneous spinal extradural haematoma;
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=1999;volume=47;issue=2;spage=159;epage=1 59;aulast=Tewari (http://www.neurologyindia.com/article.asp?issn=0028-3886;year=1999;volume=47;issue=2;spage=159;epage=1 59;aulast=Tewari)
I did find this article, AVM’s are mentioned but I’m not sure exactly if SSEDH can be linked to AVM’s. – guess we need Dr. Wise’s comments on and if there is any relationship here. And I can relay on the pain.
Sue Pendleton
07-31-2005, 09:38 PM
-
[font=Verdana]Many years ago (-87), long before the physical problems with the AVM occurred I did have one incident which I later am sure had to do with the AVM. I was sitting on an airport waiting for my flight for going to work and then out of nothing came a pain in the chest like I was stabbed by a knife, it was very painful and I was sure I was going to die, got problems with breathing etc. The doc’s did all kinds of tests but did not find anything. I got better and did not have any problems until many years after. What I believe happened here is that it must have been a nerve that was pinched by the growing AVM. This must have been one of the nerves controlling the chest area over T4 where they did find an AVM many years later. Thanks, Leif.
It's strange you mention this Leif. About a month or so before my stroke I went on a long slow bike ride out into the country with friends. We stopped at a gasthaus for lunch and just as my food arrived I had a pain hit me just above a tooth right below the outside of my right side of my nose. I had migraines when I was younger of the classic type: head for the bathroom for no real reason, vomit and the pain hit right between the eyes and back some as soon as I stood up again. No "no reason". It hurt so bad I wanted to barf right there and then. Just as suddenly it was over.
I went to army emergency dental call in the morning (civilians who work for the army get emergency dental only) and an xray showed no problem with the tooth, the crown over it or anything the doc could see of the root. To this day I can feel where that area is swollen a bit and worry A LOT about when the root canal for that starts. But it was brought up to the ER and ICU teams while I was unconscious by my husband. I had a full head CT scan while I was still awake and breathing ok and it showed nothing wrong in that area. Maybe the clot or whatever was so tiny it wouldn't show. Or maybe it was a break in the vacuum created when the crown was glued on and suction somehow reconnected the vacuum. I just know that that pain was incredibly sharp, serious and deep. Much worse than the first hit of a migraine and I didn't think that was possible.
Hmm C1 and C2 do go up the neck to the lower face and ears. Maybe we do need Wise to take a peek at this thread.
Sue,
I don’t know what this could be. But I know stories about AVM’s that first was expected to be dental problems. Here is a link to westga.edu (http://www.westga.edu/~wmaples/parrish_brian.html (http://www.westga.edu/~wmaples/parrish_brian.html)) for a story that started with dental problems. Westga.edu has a huge website with many narratives about peoples with AVM’s and vascular problems where the problems can be either in the brain or the spinal cord. I agree with you, we need Wise to look into this.
By the way, I also posted my narratives there some time ago for hoping it could help others; http://www.westga.edu/~wmaples/fjellheim_leif.html
I'm also hoping that I can go back to the website sometime in the future and update it with some information of me walking again:)
Leif
Wise Young
08-03-2005, 03:45 PM
Is an AVM similar to spontaneous spinal extradural haematoma, or are they totally different?
I know how bad the pain can be from a bleed. Mine was so enormous, I actually started stabbing my hand with a needle to take my mind off it(and failed), I also tried to burn my chest with a hot water bottle I happened to have. I know all that sounds ridiculous, but the pain was absolutely phenomenal, and I was utterly desperate.
Keps, a frequent manifestation of spinal AVM is a history of pain. It is often one of the first signs of ischemia, before paralysis. An acute episode is often associated with hemorrhage.
I was involved in some of the earliest studies of embolization therapies of AVM in the early 1980's, evaluating somatosensory evoked potential monitoring. In these cases, I have seen many cases where embolization partly reversed sensory loss and paralysis, even after many years. For example, we did an Israeli athlete who had been paralyzed for several years and, over several weeks, he walked out of the hospital.
I have been hearing people talking about the superiority of surgical approaches to AVMs versus embolization. From my experience, I am surprised by these stories. The man that I worked with is Alejandro Berenstein and I consider him to be the best and most experienced interventional radiologist. With careful planning and monitoring, the number of patients who get worse from the embolization is small, probably less than 5%. A sizable proportion of patients get better, on the order of 60% or greater.
One thing that Alex Berenstein did was to stage the embolization. He often will not do it all in one sitting but will go back and do it over 4-5 procedures over several weeks, allowing the blood flow to redistribute after embolizing one vessel and then going back in again to more in stages. It is possible that in centers that have less experience, they try to do too much at a time.
Wise.
I have been hearing people talking about the superiority of surgical approaches to AVMs versus embolization. From my experience, I am surprised by these stories. The man that I worked with is Alejandro Berenstein and I consider him to be the best and most experienced interventional radiologist. With careful planning and monitoring, the number of patients who get worse from the embolization is small, probably less than 5%. A sizable proportion of patients get better, on the order of 60% or greater.Wise. I’m not arguing this. In all my reading and discussions with doctors for treating avm’s they all recommend embolization. They did it with me and they also tried to do it in steps. But when embolization is not possible for a complete removal I understand from my reading and the doctors involved in my case that surgery is a last option. This is if the avm finally will paralyze a person left untreated. I also understand that surgery on this field has developed a lot the last years, meaning that it is less risky then before.
I have also read about the “window of opportunity”, as I understand that this means is; if you get the symptoms caused by an avm like loss of sensation and functions the “window of opportunity” means that sensation and functions lost the last half year are most likely to recover if treated by embolization. Sensation and functions lost before this half year are more difficult to recover. Thanks Leif.
Wise Young
08-05-2005, 07:41 AM
I agree with your description of surgery as the last option. I oppose the attempts to establish a "therapeutic window" for AVM's because it is not based on strong data. It also gives false sense of security for delaying therapy and, at the same time, may deny therapy to some patients who are beyond the therapeutic window but who might benefit from interventional neuroradiology or neurosurgery. Unnecessary rules sometimes come back to haunt us.
I have seen patients benefit from embolization many years after their initial symptoms and discovery, including reversal of symptoms. In the 1980's, because the outcome from surgical treatment of AVM was uniformly poor, most neurosurgeons would delay operation on AVMs until significant symptoms developed. With the advent of interventional neuroradiology, not only were AVMs discovered earlier but the threshold for intervention became lower, i.e. pain or transient neurological loss.
Common sense tell us that it would is important to eliminate the AVM before it ruptures or otherwise causes injury to the spinal cord. This is the advice that neurosurgeons give to their patients regarding aneurysms which is another vascular malformation with similar risks as AVMs.
Neurosurgeons have three distinct disadvantages when approaching an AVM surgically, compared to an interventional radiologist approaching the AVM through a blood vessel. First, the neurosurgeon does not have the luxury of going back multiple times and staging the procedure. Second, the neurosurgeon can only approach the AVM from the surface. Third, surgery is often associated with hemorrhage. Even a small leak of blood can cause vasoconstriction that would shift flow into the shunt, initiating a cascade of events leading to a worsening of the ischemia for an already borderline perfused tissue.
From my experience both in studies of the middle cerebral artery and observations in the operating room during embolization cases, the major cause of ischemia in AVM results from increased intravenous pressure. Blood flow across capillaries depend on the arteriovenous (AV) pressure difference. Because the AVM is dumping arterial pressure directly into the veins, venous pressure increases and therefore reduces the AV pressure difference. Most AVMs have a "penumbral zone" where there is borderline ischemia of the tissue around the AVM. This zone is at risk whenever one embolizes or operates on the AVM.
Embolization is often difficult, particularly in high-flow AVMs. The reason is that the embolization material (whether it is beads, glue, or whatever) may get into the vein and clog up venous flow. In many cases of embolization, people get worse during the 24 hours after the embolization rather than during the procedure, due to "sludging" of venous flow. An experienced interventional radiologist has many tools to deal with this problem. For example, one is to use a coil rather than beads. One can place a coil, pass a current through it to heat up the coil to initiate clotting, and then detach the coil once clotting has started. A second option is to occlude the AVM a little at a time, going back multiple times.
The skill of the interventional radiologist or surgeon is crucial. Speed is of the essence for interventional radiologists because when one places a catheter into the feeding artery, it occludes blood flow. If the procedure takes too long, that occlusion itself causes ischemia. So, speed is important. I have seen evoked potentials decline over a 10-20 minute period while the catheter is left in place. Likewise, it is important that the neurosurgeon really understand the 3-dimensional structure of the AVM and does meticulous surgery with a minimum of bleeding.
It is one of the most challenging intervention/surgery that I know.
Wise.
Wise. I’m not arguing this. In all my reading and discussions with doctors for treating avm’s they all recommend embolization. They did it with me and they also tried to do it in steps. But when embolization is not possible for a complete removal I understand from my reading and the doctors involved in my case that surgery is a last option. This is if the avm finally will paralyze a person left untreated. I also understand that surgery on this field has developed a lot the last years, meaning that it is less risky then before.
I have also read about the “window of opportunity”, as I understand that this means is; if you get the symptoms caused by an avm like loss of sensation and functions the “window of opportunity” means that sensation and functions lost the last half year are most likely to recover if treated by embolization. Sensation and functions lost before this half year are more difficult to recover. Thanks Leif.
EFryer
08-10-2005, 06:24 PM
I was in my garage one night, I bent down to pick up my mail, and i felt a snap...within 5 minutes, i was numb/paralyzed from the neck down. Turned out to be c5/6 disc. I windered for a long time why and how the heck this could happen - i didnt even do anything!!! Strange stuff, but thankfully, I have regained almost all of my ability and most of my feeling. The abormal has become normal to me. It is nice to know that I am not alone.
Wise Young
08-10-2005, 10:34 PM
I was in my garage one night, I bent down to pick up my mail, and i felt a snap...within 5 minutes, i was numb/paralyzed from the neck down. Turned out to be c5/6 disc. I windered for a long time why and how the heck this could happen - i didnt even do anything!!! Strange stuff, but thankfully, I have regained almost all of my ability and most of my feeling. The abormal has become normal to me. It is nice to know that I am not alone.
Efryer, I am glad. I presume that you had it decompressed soon. Wise.
duramater
08-11-2005, 05:02 PM
Those few times I was able to discharge someone after a decompression who came in paralyzed and went home walking. Those times give the surgeons a big rush too. They go strutting through the nurse's station smiling....unlike the rest of the times when they bark orders and run out without signing them....sheesh...
I am glad to hear you are recovering well....
Mary
woman from Europe
08-15-2005, 06:08 PM
I think this forum is a great idea. I got suddenly paralysed 36 years ago, five minutes and no pain. First the doctors believed it was a spinal bleed, now they say it was most likely a spinal stroke but I don't think they find the reason. The MRI shows nothing wrong but still I am a th12 incomplete