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Spinal AVM

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Old 03-05-2010, 06:25 PM   #1
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Spinal AVM

It's been awhile since I last posted. Its truly been a whirlwind trying to adjust to all of this spinal "talk"! I always considered myself a pretty intelligent woman until here lately.

I posted a few months ago regarding the pain, numbness, and tingling (among other ailments) in my cervical spine, shoulders, arms, and hands. I went for an MRI (without contrast) in December of 2009. According to the results I had minimal annular bulges at C3-4 and also C4-5. At C5-6 there was a small diffuse disk osteophyte complex 3mm in AP diameter indenting the sac without canal stenosis. Sac AP diameter is 10mm. The ventral surface of the cord is slightly deformed adjacent to the disk, although there is CSF between the disk and cord. Mild bilateral foraminal narrowing. Elsewhere, there are more mild degenerative changes.

Prior to this I was seeing my family Dr who diagnosed me with fibromyalgia. I kept begging with her that I was in pain and at my LAST visit with her she actually touched my neck and told me she didn't "feel" anything wrong!! What nerve.....So needless to say that was my last visit with her!!
I decided to go see the urgent care Dr (well actually he is a nurse practioner) that I had seen 2 yrs before to see what he could do. (he is, by the way, my new "Dr") .

He suggested I see a neurologist. I made an appt and the neurologist ordered an EMG and also an MRI of not only my C-spine but also my brain. I went for the EMG and they found nothing abnormal. I then went for my MRI's. They were with and without contrast. I did not know until right before the test that they were actually looking for MS. As I look back on it now, it does make sense to rule that out first.

I have not gotten my actual written reports of my MRI's yet, but the neurologist did mail me a letter. Here is what it says:

Your brain MRI was essentially unremarkable (I kinda took offense to that! LOL), but your cervical MRI showed results suggestive for a condition called arteriovenous malformation. Good news is that your spinal cord itself does not seem to be compressed, nor show any signal abnormality in the MRI. However, the surrounding blood vessels at your cervical spinal cord showed a bit "prominent" appearances on the MRI study. Our radiologist thought that this could be due to arteriovenous malformation (AVM; this is a condition when artery and vein get connected without significant capillary vessels; usually this is present from birth).
I am not sure whether this finding is causing your symptoms, or just an incidental finding.
Otherwise, you do have disk disease (degenerative disk disease), but it does not show significant signs for "pinched" nerves nor compression of you spinal cord. On the other hand, patients with AVM tend to have multiple locations of AVMs. Therefore, I think it is reasonable to evaluate your other part of spines (including thoracic and lumbar spines).

Ok, so I went for the other MRI's of the thoracic and lumbar spines and called for the results. According to the neurologist, there were no other AVMs.

I went to the urgent care Dr and explained to him what the diagnosis was. He still could not understand how the AVM could possibly be causing all of my pain. So I really felt stupid asking him for more vicodin! But I did anyway because I can't make it thru most days without it!~ (was he right? Should I not be in this much pain?)

So the neurologist called to tell me there were no other AVMs and also explained what my option was now. He said he could order an angiogram to better be able to see the AVM because at this point they could not get anything else from MRI. He also stated all of the risks of having an angiogram and I explained to him that I had had a whole weekend to study up on AVMs and that I considered myself very fortunate that it was found now and not after a bleed!! Really everything I have read states that most AVMs are in the brain and that spinal AVMs are very rare. I told him I would like to have the angiogram, so he is getting it scheduled.

So that is where I am.....Pretty scared to tell you the truth!! The thought of being alone or alone with my 3yr old granddaughter and have this "thing" rupture and bleed scares the you-know-what out of me!! Should I be as scared about it as I am or is this something that now, 2010, they have "fixes" for??? Should I look for help outside of my area? I was told by my neurologist that there is only 1 guy at Ohio State University Hospitals that does angiograms on AVMs. Should I see someone else? I am confused and scared!! Any help or comments would be greatly appreciated!! (sorry about the long post)

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Old 03-06-2010, 06:29 AM   #2
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Re: Spinal AVM

I would also consider a consultation with a neurosurgeon. While a neurologist is good in some situations I would think that with the cervical symptoms and AVM you need to see a good neurosurgeon for a complete evaluation.
Rt thumb fusion '13. R&L thumb arthroplasty '12 ; RT TKR & Bilat CTS' 11. Fusions: L5-S1('87), L4-S1('93), C5-C7('06), L3-S1('10), C4-C5('13). C5-C7 foraminotomy '08

Old 03-06-2010, 11:24 AM   #3
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Re: Spinal AVM

sorry i am almost out of time here. but the one thing you DO definitely need here simply to find out whether or not this vascular malformation actually even IS a true AVM or its venous couneterpart called a cavernous hemangioma is CRUCIAL for you right now. my MRI that actually stated i DID have most defintitely have an AVM smack in the L lateral part in my spinal cord was determined only AFTER that angio was done and it simply did not actually 'light up' with a contrasting agentt they use during the actual angios is what proved what this actually was. venious fed lesions are much less dire than the arterial ones which an AVM actually is, arterially fed vs venous.

just wanted to mention that much to you before i have to sign off here hon, but i WILL be back here tomorrow to give you more solid info. i too did what you did during the two weeks it was assumed i actually did have the AVM(research research research), and yes it did scare the crap outta me too. there are actually three totally different types of vascular malfomation this could be or a person can have in their cord areas. one is the AVM, the others are the cavernous hemangiomas like i had, and the other is called a fistula where there is a very direct connection between both arteries AND veins, which should NEVER ever happen since that can create some real issues when directly connected without a true capillary bed to reduce down the high pressure arterial flow to accomdate what has to be the lower velocity flow of the veins. do you know if when they actually used that contrast with the MRI whether or not there was indeed any light up in that lesion area? it should state in in your MRI if it did. was there ANY mention of the word 'hemosiderin staining"? just hang in there, i DO know way too much about these little bast**** now than i ever wanted to. til later, marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Old 03-07-2010, 10:26 AM   #4
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Re: Spinal AVM

getting yourself to probably one of the only true places where they just see these types of the more rare conditions is your main priority right now. and that WOULD be more than likely ANY universtity type teaching facility. this is just where the majority of people go to as the 'last resort" when they simply cannot obtain the needed info from the average NS who maybe sees like only one or two of them during the entire length of their practice? i went to the the U of MN and was just lucky enough going there at the time before this amazing head of NS was going to be retiring on me later on in 2006(didn't know that til 2006 hit when he announced it and i was just soo lost) luckily for me,this was only 2003. this was also the ONLY NS around that has also seen and treated/resected or monitored like hundreds of the hemangiomas and the AVMs among other strange vascular malformations just given the length of time he had been practicing there. THAT was the man i needed to have on my case. but despite seeing two other good knowledgable NSs before i even got to the U, i got two totally opposing opinions as to what this little sucker inside my cord actually ment for ME, and my prognosis for me future. neither one had even bothered to actually even tell me that my cav had actually bled inside my cord sometime before that very first initial MRI was even done. i found out the very first appt,among other things i was never told, that i had an active bleeder. freaked the crap outta me moreso since i just was never actually TOLD this had happened til HE told me at my first consult. i mean just how freaking sick WAS that?? hellooo this IS inside my spinal cord people?

you just really do NEED to be seen and evaled at the msot likely place that would just have the MOST overall experience. that part IS really crucial for you right now just to really get the best overall picture for you and any possible treatment options, and there are many different ways they just CAN treat these now as opposed to earlier on when there really was not alot of info out there on there things that as you were told, just ARE a very rare occurance. the one huge thing here that you do have going for you is this all appears to be on the OUTSIDE of your actual cord with nothing IN it? very different than where mine was? the thing about these themselves creating actual pain, they alone do NOT, only becasue they are not innervated but only tangles of vessels, BUT it comes down to location location location as to what if any real pain or other actual symptoms will just be there at all. just like with any other finding that creates pain and radiculopathy from any spinal issues up there, the vascular malformations, depending upon just where they are located and what IS simply being impacted by their presence would realistically dictate ANY potential symptoms you may have or feel. so do not allow them to blow off ANY real symptoms you are feeling at all here. it all comes down to just what IS being impacted and more than likely also under some good solid pressure from the malformation itself?

i really do not understand just why they need to send you to some special 'facility' ONLY for the standard angio really. mine was suspected to be the same thing you have and it was done at my local hospital but the man doing it at the time which i was not even aware of yet just also happened to be one of the best in his field of neurointervential radilogy too. but if this is where they want you to go, then by all means, go there and see what the hell this thing actually consists of. and it would also get your foot in that very important door of the uni teaching hospital too where i just personally really think your very best bet in even finding the best and more importantly experienced type of NS would also just be.

the much more rare the finding is that anyone just has to deal with, unfortunetly it is just that much harder to really find the best and most experienced type of treating doc too. it IS that higher level of experience and knowledge that you just NEED right now moreso than anything else. so that uni hospital i think really would be your very best place to go with this type of finding. the one huge thing you need to find out is if this sucker will light up during that angio. light up IS an arterial component in some way. no light up IS a venous thing and much lower pressure. if you should end up with kind of a half and half light up,its more than likely a fistula i mentioned in the other post?

sorry you even have to deal with this at all hon, but being on the outside and not in your cord area at all is a really huige great and wonderful thing, so please always keep that in mind, K? and YES you were more than likely actually born with this little sucker just like mine was. kind of a really sick type of 'birthmark" don't cha think? if you have anymore questions or anything else i can possibly help with here, just please let me know,K? good luck with this hon and DO most definitely keep us posted, marcia
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

Old 03-07-2010, 02:05 PM   #5
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Re: Spinal AVM

I am so sorry you had to go through all of that!! As if just having a spinal AVM isn't bad enough, you had to go and have the worst one!!
As I posted all of my "stuff", I was hoping you would respond as I have read your prior posts and kinda thought my experience was similar to yours. I really appreciate you taking the time to "talk" with me.

I guess now I play the waiting game. I am going to call Monday and find out when my angiogram is. As far as them scheduling it at OSU, that is where my neurologist works out of so I wasn't too concerned with that part. I was very concerned, though, when he stated that there is only 1 person who performs angiograms for AVMs. That has me worrying that it will take 6 mths for me to get in!! That scares the crap out of me!

I am also going to call the neurologist 's office Monday and requested a copy of the actual written MRI's. I have all of my films but I have no idea what I am actually looking for, ya know? I know I see the vertebrae (looks like blocks stacked on top of each other with little spaces in between each one), and to the right of them is the spinal cord (looks like a solid dark tube except when the contrast is shown), then to the right of that it looks like fibrous muscles. I can also click to the next image and I do see at the top of the cervical spine in the actual cord what looks to me like a little grub worm looking thing. (grub worm is smaller than a caterpillar and is white, kinda transparent with black beady eyes) This grub worm looking thing has 3 black dots stacked on top of each other.

I don't know if this is what the radiologist is talking about, but that would explain the pain I have in my neck in that particular area. It is where my head sits on top of my spine. On both sides it gets hot to the touch and feels swollen at times. I also have popping and grinding right above my shoulders on both sides, but I think that is probably from the bone spurs at C5-6.

Again, I don't know if this is even the area they are thinking the AVM is. I will hopefully know more from the angiogram.

Is it possible for the neuroradiologist (I think that's what they are called!) after he is finished with the angio to be able to tell me right then and there what it is, or do I have to wait to hear from the neurologist?

I have only read bits and pieces of your story. How/why were you left with hand and leg issues? Is the procedure for AVMs different than what they do for CAs? Have you heard of the Barrows Clinic in Phoenix? A lot of what I read refers to them. How old are you? Are you still able to work?

Thank you again for "talking" with me. The people in my circle can only understand up to a certain degree and it feels really good being able to talk with someone who gets it. So thank you for being that person for me!!

I hope you are having a wonderful Sunday!!

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