ischemia or other vascular causes of SCI

[walkanotherday]

Last night's episode of House was about a paraplegic of two years who was cured after another health problem lead doctors to the discover the misdiagnosis of his SCI. It turned out his SCI was caused by some sort of vascular or AVM problem.

The patient had so much swelling during the initial onset that the AVM was hidden from all the tests and MRI. It was only because of the anti-inflammatory effect of the steroids he was given for the other health problem that they were able to find the AVM.

I know it's just a TV show and I'm obviously not a doctor but wouldn't there be clues in the bloodwork to show signs of stroke or any other vascular causes of SCI?

Would fixing the AVM 2 years post-injury help a paraplegic walk?

I'm curious becuase I'm a T8 of 3 years post and still am not sure exactly what happened to me. The Doctors suspect some sort of ischemic event.

"My legs hurt like hell sometimes but if I don't think about it, it goes away."

[Sue Pendleton]

I love that show. Which means that it will be cancelled. They also had an episode where a guy fell mountain climbing and nothing showed on MRIs or CTs but paralysis was climbing up his body (ok, so somethings are wrong). They found an embolism caused by a contusion injury when the guy went into AD while he was in the OR for an exploratory..

As for AVMs? Hard to tell. Is the T8 diagnosis based on MRI? Or is it from functional testing and being poked with needles and prodded with a tuning fork? If only from functional tests I'd probably take the risk and have an angiogram done. If your MRI showed something but a lumbar puncture was clear you might have had a stroke or TM. If you haven't had a lumbar puncture get ready for serious headache pain. At T-8 I think I might want a cardiologist to sit in on a review of your case.

Sorry. Couldn't resist. I'm thinking of going back to school. http://sci.rutgers.edu/forum/images/smilies/eek.gif

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[walkanotherday]

I lost count of how many MRIs and LPs I have had in the past 3 years. All I ever got is. "there appears to be swelling between t8-t10".

I had the needle tests too but I think the T8 is a MRI T8.

By the way the taps weren't clean, high myelin basic protein among some RBCs and WBCs. That lead to the initial TM diagnosis. However, onset was probably around 30 minutes and happened while surfing (didn't fall or crash). Kerr from TM Center in Hopkins didn't think it was TM and felt it was stroke or some sort of physical trauma.

Why a cardioligist for T8?

[sbdspray]

my avm was fixed 6 weeks after onset of paraplegia and I cannot come close to walking, standing, urinating without catheter, and having a orgasm or erection. Most spinal avms start with stuttering paralysis, giving doctors and the patient time before full blown paraplegia starts.

sherman brayton

[Shawn]

Due to an aorto rupture in a MVA (1996), i suffered a spinal infarct at the T10 level. I've been an incomplete paraplegic ever since.

[Sue Pendleton]

Originally posted by walkanotherday:


By the way the taps weren't clean, high myelin basic protein among some RBCs and WBCs. That lead to the initial TM diagnosis. However, onset was probably around 30 minutes and happened while surfing (didn't fall or crash). Kerr from TM Center in Hopkins didn't think it was TM and felt it was stroke or some sort of physical trauma.

Why a cardioligist for T8?

I'm not about to contradict my neurologist. LOL I suggested the cardiologist because the main artery to the spine is in the T-8 region. If you had no other tests that indicated a reason then maybe an heart doc might have a clue. How high was you myelin basic protein? Higher than 9?

My infarct was also fast. Looking back at the CT from Ulm of my brain and the time stamp on it; I went from fine to unable to move below the neck within an hour. Maybe 90 minutes. Intubated after maybe another 15 to 30 minutes. But my taps were clean except the first had a few RBCs the doc recorded as being from the procedure itself.

And yes, not knowing what caused it drives me nuts!

Sherman, you didn't have any stuttering?

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[Wise Young]

walkanotherday,

There is no blood test that I know that would be able to distinguish between a stroke, TM, or other causes of injury to the spinal cord.

The definite test for an arteriovenous malformation (AVM) is to do an arteriogram (a x-ray of the blood vessels after contrast injection). While it is possible to detect an AVM from the presence of enlarged veins in the spinal cord, this may miss some small AVM's.

If you have an AVM and continuing ischemia (low blood flow in the spinal cord), treatment of the AVM may restore some function. I have participated in studies of patients with AVM's where fixing the AVM by embolization have restored some function even though the person may have been paralyzed for many years.

The spinal cord receives a portion of its blood supply from a blood vessel that enters the spinal cord at T6-T10 levels (it varies from patient to patient). Called the artery of Adamkievicz, this artery provides the blood flow for the gray matter of the thoracic spinal cord.

Ischemia of the thoracic spinal cord may result if the artery is blocked as a result of damage to the aorta (in an automobile accident), an embolus (clot or collagen) goes into the artery, or inflammation of the artery. A unknown proportion of so-called transverse myelitis (TM) cases are likely to be due to ischemia of the spinal cord.

Wise.

[Sue Pendleton]

Originally posted by Wise Young:

walkanotherday,

There is no blood test that I know that would be able to distinguish between a stroke, TM, or other causes of injury to the spinal cord.
_
No, but once they decide it's a stroke in comes the blood guru from Georgetown with his own sticker to see if you have sticky platelets or a zillion things no one can pronounce. I mean she took 9 or 10 vials out of me and that took 4 sticks. I have beautiful blood was the basic result of all those tests.

"A unknown proportion of so-called transverse myelitis (TM) cases are likely to be due to ischemia of the spinal cord."

Or as one of my docs said..."the infarct could have caused TM or TM could have caused your infarct. (I think there was more than coffee in that cup.) http://sci.rutgers.edu/forum/images/smilies/wink.gif

Wise.

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

[gretchen]

I don't know... I became paraplegic as a result of embolizations. I lost sensations in my right leg after the first one. A few hours later, the doctor performed another embolization, and I lost the left leg too...and then the avm was still there compressing my spinal cord, so two weeks later, I lost anal sensations. If I had known then what I know now, I would have had the surgery done right there and then. The motor functions I have recovered happened after the avm was removed. As my surgeon put it,"in the hands of an experienced surgeon, it is a low-risk procedure" http://sci.rutgers.edu/forum/images/smilies/frown.gif((((

gretchen 1

[Leif]

I had my AVM (Intraspinal Th4-Th8) fixed two years after my first symptoms witch where reduced sensation and motor starting slowly down in my legs. The problems continues and I lost more sensation/motor further up the legs...

The AVM was discovered on MRI and following Arteriographi. I lives in Norway and here at the National Hospital several attempts with embolization was carried out, just one big "feeder" was glued - the minor "feeders" was considered to risky to navigate into with the catheter. I also went to a hospital in Paris (France) for second hand attempts with embolization without any luck...

Finally surgery was considered the best option due to the AVM continued to grow/expand. A professor here in Norway arranged surgery in Phoenix AZ by Robert F. Spetzler at Barrows Neurological Institute. - He and his team managed to totally remove the AVM by surgery.

Did I get any better after the surgery? Just minor improvements. But most important in my case, the surgery did stop the AVM to expand and causing furthermore problems for me. I know the surgery was risky, but did I have any other options?

So in my case the answer is - I was not able to walk without any assistance after fixing the AVM. As for now I can walk some yards with crutches.

I have also read that the window of opportunity after damage to the spinal cord due to an AVM is up to half a year, meaning functions lost in this window are likely to restore themselves. Above that I have also read that AVM damage to the spinal cord can be seen as a SCI and in general improvement window after surgery can be up to two years. Off course this is just in general.

I have also some leg pain, for that I take Neurontin 3x600mg/day.

So what next! Research and waiting for Stem-cell therapies.

Leif



Originally posted by walkanotherday:

Last night's episode of House was about a paraplegic of two years who was cured after another health problem lead doctors to the discover the misdiagnosis of his SCI. It turned out his SCI was caused by some sort of vascular or AVM problem.

The patient had so much swelling during the initial onset that the AVM was hidden from all the tests and MRI. It was only because of the anti-inflammatory effect of the steroids he was given for the other health problem that they were able to find the AVM.

I know it's just a TV show and I'm obviously not a doctor but wouldn't there be clues in the bloodwork to show signs of stroke or any other vascular causes of SCI?

Would fixing the AVM 2 years post-injury help a paraplegic walk?

I'm curious becuase I'm a T8 of 3 years post and still am not sure exactly what happened to me. The Doctors suspect some sort of ischemic event.

"My legs hurt like hell sometimes but if I don't think about it, it goes away."

[gretchen]

Leif,

The same thing happened to me... I have learned since that embolizations don't work. My surgery was successful (the avm was removed entirely) but because my spinal cord had been compressed for a long time, my recovery has been limited to walking with a walker, or with canes at best.
My two failed embolizations had not solved the problem and the longer that mass pressed against my spinal cord, the more damage it caused...I too had been told surgery was too risky, but Dr. Wallace told us it was low-risk in the hands of an experienced surgeon. My husband picked him because we wanted the best in the field. Before the surgery, my only prospect was being able to make transfers to and from a wheelchair!! I don't understand why your avm would continue to expand if it was removed entirely??? U was told they don't grow back? I suggest you get a consult with Dr. Christopher Wallace of Toronto Western Hospital. He works with Dr. Terbrugge, a neurologist and they make a wonderful team. I think they are the best in the world and they really care about their patients. If something can be done, he will tell you. Good luck!

gretchen 1

[Wise Young]

Gretchen, I am very sorry to hear of your difficulties with embolization. However, I don't think that it is true that embolizations are necessarily dangerous or ineffective. There are many studies that show that embolizations for arteriovenous malformations are effective and have lower complications compared to surgery. Everything of course depends on individual cases and the malformation involved. Wise.

[Leif]

Hi Gretchen 1

I believe I have the same function level as you today, - can walk some with crutches and a walker.

But I think you misunderstood me: After the success of totally surgical removal of the AVM by Dr. Spetzler the AVM off course did not expand. Nor did I become any worse. - The surgery did stop the negative trend I was in before I had the surgery.

I also completely agree with Dr. Wise that embolization can be a good procedure for dealing with AVM's. My first embolization did slow down the expanding of the AVM some, but since they were not able to perform embolization on smaller arteries I had to go for surgery. This also in the light of that I was becoming worse month by month.

I have also learned that like in my case the steps for dealing with the AVM were embolization of major feeders and then surgery. The only thing I am thinking about is how it would have gone if I did go directly for surgery - would I have had more of my functions than I have today - guess I will never have the answer?

So today, I am in a stable condition with respect to signal changes and for that I am glad.

I also agree with Wise that each individual AVM case should be dealt with as an individual case - the nature of AVM's can vary a lot.

I'm also sorry for your condition, and hopefully there will be a cure for problems like this soon - thinking about all the great stem call research ongoing in different countries.

Leif

[gretchen]

Leif,

I agree with you and Dr. Young that embolizations can be the answer, but every case is different.

In my case, I know if I had had the surgery right away, I would not be paraplegic today. The neurologist who performed the embolizations confided that he felt my husband had been right to take me to Canada for the surgery. He told me himself he had been wrong, didn't have enough info on avms at the time, and the hospital's neurosurgeon believed the procedure was too risky.... You might not be visiting this site if your avm had been removed right away, but knowing this won't help you and there is no sense being negative. Keep up your therapy and good spirit. I hope there is a cure right the corner for all of us!

gretchen 1

[Leif]

Gretchen 1,

I'm thinking the same as you - if I had taken the surgery right away - would the outcome have been better for me. I think so, but here again, the outcome could even have been worse?

I have a good book regarding diagnostics and treatment techniques etc for AVM's in the spinal cord.

VASCULAR MALFORMATIONS of the CENTRAL NERVOUS SYSTEM. By Jafar J. Jafar, Issam A. Award & Robert H. Rosenwasser. ISBN 0-7817-1472-9
I believe it can be bought at amazon.com.

You went to Canada for surgery? Toronto maybe? I kind of find that a little bit strange - not that the Canadians are doing a good job (I worked there a few years), but since your country has excellent places for dealing with AVM's.

Here is also a website that might be interesting for you: http://www.westga.edu/~wmaples/avm.html


Leif

Comment on: No sense being negative and keeping up the good spirit. - I'm born positive.

[gretchen]

Leif,

I know I wouldn't have been paralyzed, and I don't think you would have been either... but I don't want to dwell on this because it doesn't help me now!

Dr. Wallace told us this procedure usually required a 48 hour stay in the hospital, with patients walking home of course. Some of his patients are football players and have gone back to playing football.

The neuroradiologist who did the failed embolizations came to see me later and told me that my husband had been right to take me to Canada.

I went to Canada because Dr. Wallace was the best in the field. He had done a lot of similar surgeries, unlike the doctors I was seeing in DC who kept saying the surgery was too high-risk - keeping a large mass in my spinal cord was not?

Let us hope something comes up soon... this is no funhttp://sci.rutgers.edu/forum/images/smilies/frown.gif

Incidentally, my latest MRI doesn't show any abnormality, does yours? I wonder what kind of test would actually show the damage my spinal cord has suffered.

gretchen 1

[Leif]

Originally posted by Gretchen:


Incidentally, my latest MRI doesn't show any abnormality, does yours? I wonder what kind of test would actually show the damage my spinal cord has suffered.

gretchen 1


Gretchen 1,

After the surgery and removal of the AVM I underwent several follow-up examinations at the National Hospital in Oslo here in Norway.

At first the radiologists was afraid that there could be a tethering at the operation site. But that was ruled out.

Here is a summary of the letter from the National Hospital in Oslo to Dr. R. F. Spetzler in Arizona for his opinion (this is the latest examination). Sent by my Professor:

Imaging February 2004: MRI now longer shows the signal changes described previously. The distance from the posterior aspect of the spinal cord to dura level is markedly reduced corresponding to the surgical corridor, however our radiologists doubt that tethering is present. Spinal angiograms disclosed no pathological vascular structures, thus confirming the complete exclusion of the AVM.

I would like to hear your opinion. I believe the result is satisfactory, in view of the fact that a continuously deteriorating clinical situation has been curtailed.

Films both of MRI and Spinal Angiograms were sent.

The answer was: The MRI and the Spinal Angiograms look great.


So for my examinations MRI and Angiography (Arteryography) was used.


Hopes this help.

Leif

[lynnifer]

So how do you tell the difference between TM and an AVM?

[gretchen]

Leif,

Thanks but no, this doesn't help. My MRI and my angiogram look great too.

However, the fact that we are paraplegic indicates there must be some damage. Where exactly? If I send my MRI to Dr. Kleinbloesem and/or Dr. Huang, and they don't see what the problem is, nything "abnormal", how can they recommend a therapy?

gretchen 1

[woman from Europe]

I am very curious about one thing For those of you who do not have a traumatic sci, how long time did it take from you were AB to you were totally paralyzed? For me it took about two hours. It started from my feet and it was going up and stopped by the t12 level. And they never found a reason and my MRI looks normal and so did all the other tests I have taken too.

TH 12 incomplete 12-12-69.

[Leif]

Gretchen 1,

You asked me what kind of tests would actually show the damage my spinal cord has suffered.

Maybe I misunderstood you here: I was thinking like in my case, first I got the reduced sensation and motor signs to my legs a little by little. Then I went to a doctor following examinations including a MR scan. - The MR did find a lesion that first was anticipated to be an AVM and then confirmed by a later taken Angiogram.

This in fact have showed where my origin of the problems was (documented), off course I have also had some oedema in the cord due to the pressure and the lack of blood flow to the surrounding tissue (nerve cells). This is a fact since I am paraplegic. And this can be a problem to detect and pin point I believe.

The surgeon also knows where he did the removal of the AVM. But in fact we don't know what secondary causes the AVM has done to the cord.

I know what you are asking now: How to pinpoint the area for a new treatment (if), how to be able to see these area/areas on a film/scan or by other means. - I don't know! Cause as you says, the scans/films are normal but we are not.

Lynnifer. I guess the same is valid for your comment here regarding TM.

Some days ago I did send a letter to my professor asking several questions among those. I also asked him if peoples with lesions like mine will be good candidates for the new possible treatment we can se the early out spring of - stem cell therapy. I will keep you informed about the answer to the letter. Hopefully he will understand my letter, remember I'm just a humble engineer, not a doctor.

Leif

[gretchen]

Leif, we have the same sad story and the same symptoms. Hope you get some answers so we can look for an appropriate therapy when one becomes available. Do you have a lot of neuropathic pain? Mine started right after the first failed embolization http://sci.rutgers.edu/forum/images/smilies/frown.gif

gretchen 1

[Leif]

Gretchen 1. Answers we will have! It's just a matter of time, money and politicians that can speed up things and not halt or in worst case reverse research. Time we have some of, money there is plenty of (if released) and politicians I guess we have more than enough off. And most important there is peoples like the ones on this site that can be a pain in the ass to all of the above. And maybe if we where cured, think about how wonderful peoples we could have been, maybe we could have been a resource in the world and help on other fields.

Naturopathic pain; Not much, after the surgery I got some irritating pain in my right groin area, it is not a big deal - guess I'm lucky. For that I take Neurontin 3x600mg/day. The only medication I take.

Leif

[gretchen]

I had six years of back pain and numbness that would come and go as my spinal cord tried to repair itself (I assume.) Then, one day, after hours of strenuous effort in my backyard, I experienced intense backpain again and numbness. By the end of the week, my left foot was cold. After 5 trips to the hospital, during which I was told there was nothing wrong with my back at all, and "let's wait to see what happens", we demanded an MRI and they finally identified the cause...and saw what the doctors had missed six years earlier... Still, if the avm had been removed the vein right then, I would have gotten away with minimal deficits.

Today, I am paraplegic, Asia A (I was Asia B after the failed embolizations but the avm continued to cause additional damage and two weeks later, I had lost anal sensations and contractions)

I don't know if this answers your question. I suspect everyone has a different story, although Leif and I seem to share similar experiences.

gretchen 1