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  • Spinal AVM - is it progressing?

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    Old 09-29-2005, 01:18 PM   #1
    Christie_Ewers
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    Spinal AVM - is it progressing?

    About a year ago, a doctor noticed a venous malformation on an MRI and requested that I do a follow-up on it. I did not, mainly out of frustration because they did not think that this is what was causing my extreme pain in my upper back (which is actually due to several compression fractures from a car accident). I switched doctors, because the venous thing seemed pretty trivial in comparison, and this past year had another full spine MRI done with contrast dye to investigate a sharp increase in pain severity and frequency. The MRI found that the malformation is either a spinal Arteriovenous Malformation or a dural Arteriovenous fistula (which, from what I understand, one is congenital and the other is caused by trauma). They also found it seems to have grown in the past year. I will have to have follow-up appt. with a neurosurgeon. However, now to the problem - I've been experiencing what I would call electric shocks radiating from my spinal region to the tips of my fingers and toes, not painful, but annoying, when I walk. they are now becoming more frequent occurring with almost every step. Two days ago, my legs became cramped and it wouldn't go away. Today (midday) my leg from the knee down started to go numb - just heavy and cold, and now, in 3 hours time, my foot is getting a "pins and needles" sensation along with the numbness. I've walked, stood, done everything I can think of - I'm about to float from drinking so much water. Is this a bad sign? Should I be going to the hospital? Is this the start of myelopathy???? HELP! I feel a little stupid about this.

     
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    Old 09-30-2005, 06:23 AM   #2
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    Re: Spinal AVM - is it progressing?

    Christie,welcome to the boards and sorry you even have to be here,really.i first wanted to ask just where this malformation is at,exactly?Is this in your c or T spine?Has anyone mentioned cavernous hemangioma to you or are they certain that it is an arterial(not venous)fed lesion?When my cav was first accidently found on an MRI that i was having to find out exactly which one of my c spine doscs was actually herniated.it at first was a 'possible AVM" but after I had an angiogram and it didn't "lightup" from the contrast(which is actually injected into an artery)it was determined to be a cav.

    unfortunetly,i need to tell you that this is indeed a rather BIG deal.hopefully you have a very well informed NS who is treating you appropriately.But the first thing that i want to tell you is that the pain you were and are having is most likely actually coming from the AVM or at least in part.This i can almost guarentee you.In order to actually prove this to your doc,just do a little research and find all the info out there availiable regarding AVMs and pain.now, just think of actually having something,anything inside of a small area like the cord,that is inside of actual spinal tracts and hitting nerves,and for any doc to say that it is not possible to have pain with these is insane,really.but believe it or not,alot of docs and good NSs actually believe or once believed that these actully did not cause any sort of pain,just neuro crap.Really rather unbelievable when you look at the whole pic you know?Just find some good articles and print them off and show these to your doc.there really is alot of info and good sites out there but because of the posting rules on these boards i am unable to provide them for you but you should not have any real problem in searching for info on AVMsi am kind of suprised that they do not know if this is actually an AVM or a DAF as one is IN the cord and i do believe that since it is dural,the other would be outside in one of the outter layers on top of the cord.but I could be wrong as i am not real familiar with DAFs but know lots about cavernous hemangiomas and AVMs.

    but whatever it turns out to be you really really need to educate yourself about them and the possible complications and different treatment options.depending on just where this is actually located in the cord it may be actually better to remove it as having bleeds is what will eventually end up causing you the most devistation.despite the fact that my cav was venous fed and not arterial,I was having small oozy type of bleeds that were causing more pain and more loss of neruo.when an AVM bleeds,since it is stemming from a high pressure fed source,the bleeds can be bad in some cases.I am honestly not trying to scare the hell out of you here really, just informing you of what the possibilities are here with dealing with what you have.i actually chose to have mine removed even though i was told it was not in a 'favorable" spot for surgical removal.only because the two bleeds I had already had were taking up about one third of the cordspace already and that from what my NS told me, one more bleed would most likely be rather devistating and would cause me possible instant unreversable paralyzation from my chest on down.Soo, i chose the lessor of two evils.I still have my legs but with some disabilities but I can walk.but because of where this little sucker was inside my cord,in order to actually get to it my fine motor in my hands(note the lovely typing?)and the nerves that ran to my legs took the biggest hits.but I knew going in that this was going to happen and just could not be avoided.i just had some extra damage that I was not expecting.most of it due to secondary spinal cord injuries.

    if you have any questions at all,please don't hesitate to ask,K? you have kind of a big thing to deal with here unfortunetly,but the best possible thing for you to actually DO is to research the heck out of it.honestly,this will also make it much much easier to talk with all of the neuros and other docs that you may be dealing with along the way.You need to familiarize yourself with terms and everything else involved with whatever possible treatment plan you come up with between you and your doc.In order to really make the best and most well informed decisions you really do have to know just what you are really dealing with.Trust me, you will be very glad that you did.this also gives you the sense that you do at least have some control here.i felt sooo overwhelmed by this Dx at first but the more i actually learned about it the much better i felt about the whole situation kinda in my head,you know what i mean?i wish you lots of luck here,please keep me posted,K?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 09-30-2005, 11:25 AM   #3
    Christie_Ewers
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    Re: Spinal AVM - is it progressing?

    Thanks a bunch, marcia. This whole thing is pretty scarey - I called my dr yesterday to tell them about the new numbness and they got me in this morning. Did a quick test and in know that I still have reflexes and strength, so my doc determined it wasn't an emergency, but it was still urgent. I guess if I start peeing and pooping in my pants it'll be an emergency... hope that doesn't happen!! Anyway, I have a call to get into a neurosugeon asap, instead of waiting around for this other guy my doc today is going to get me in next week with another. So, for now, just holding on...

    I'm sorry to hear that you still have nerve damage. I'm sure that it's been a hard road for you, but I'm glad they were able to remove the cavernous malformation. Did they put you through pt to try to regain your fine motor skills in your hands? Let me know how things go for you...I'm just glad to hear from someone with a similar experience!! The doctors where my PCP is are kind of treating me like a celebrity, since an AVM is kind of rare, I guess, so the whole team in this office is really working for me. I've been going here for only a couple of weeks, so it's a nice change to have caring and supportive doctors where I don't have to feel like I'm convincing doctors there is something wrong...they know there is and are doing something about it.

    GOOD LUCK with everything, marcia, and please keep in touch!! It's not really fair that either of us has to go through this, but what doesn't kill us makes us stronger. Hang in there!

    Christie

     
    Old 10-05-2005, 06:05 AM   #4
    feelbad
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    Re: Spinal AVM - is it progressing?

    You are very lucky to have such a caring group taking care of you,honestly.The norm usually isn't like that unfortunetly.i did spend a couple of weeks in a rehab hospital as besides the loss of fine motor ,i also lost alot of my L leg with reagard to strength i could not even really stand at all post op,as everytime I would try and put any real wieght on my L foot,my entire ankle just 'foled".it took alot of hours with some wonderful very caring PTs and OTs to get back the little that I was able to.The extent of any disabilitys are very unpredictable with or even without intervention.
    just where IS your AVM located with regard to spine level?my crap is all located at the c7 thru the T1.This all recieved some sort of damage at all levels some worse than others.did they happen to tell you to stay the heck away from any and all NSAIDS? anything like advil or aspirin,basically anything that might thin the blood?should be avioded at all costs.I was not told this by the first NS that I saw that actually did my first two surgeries.But it IS very important that you not take anything that could cause the blood to thin,as it really increases the risk of a bleed.do you know if this is in a 'favorable" spot for resection yet?do you actually have a copy of the MRI report that details what the rad thought he was seeing at the initial "finding" of this little SOB?If so, I would be interested in hearing just how this was actually explained in the report by the reading radiologist.ALWAYS get copies of every single piece of paper that is generated regarding your condition and then keep it all in a file that you can take with you to all of your appts.i cannot tell you just how many times the fact that I had my own records at a certain appt,really really came in handy.You have the type of condition that will require many different ongoing tests and doc visits so you definitely need to get every bit of paperwork.Keeping the latest stuff in a file that can be taken with you also really can be a lifesaver if you should have to make a sudden run to the ED for some sudden onset of symptoms or something else regarding your AVM.honestly,just grabbing that file before you go, will help the docs to better understand why you are there,what your condition actully is,and would also help you so you don't have to keep repeating your long story about your condition.just throw the file at them and let them figure it out.This is just good planning.

    have you learned anything new since your last post?please keep me posted on things,I really do care.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 10-07-2005, 02:30 PM   #5
    Christie_Ewers
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    Re: Spinal AVM - is it progressing?

    i took your advice and had the MRI reports and images copied for me. The report actually doesn't identify it conclusively - it says it is either an AVM or and AVF, located intradural and extra-axial (i can't find a definitive meaning of extra-axial), and located posteriorly to the spinal cord. The report suggests more investigation because of flow voids seen in other areas besides the obvious lesion at T-12, which is very easy to see on my MRI images and is about 1.8 cm in length. My doc actually caught the neurologist going into the OR and told him he needed to see me! my weakness and numbness in my legs gets better, then worse, but doesn't go away - the flow voids are in my conus medullaris primarily, and from what I've read leg weakness is common with a lesion in this area. It also says it can cause bowel/bladder incontinence - thank god I have none of that! I assume I'll need a spinal angiogram to investigate the flow. I have the MRI on a CD - it is really neat to be able to look through them and see into your own body! Amazing what they can do.

    What pisses me off is that I have my MRI report from a year ago, and it suggested that there was an AVM as well - NO ONE told me that this could be serious, they just said that I should probably investigate it, and NO ONE told me that this could be causing my severe back pain! In fact, immediately following my latest MRI in late August, my PCP told me that my pain was caused by "depression" and that I was addicted to pain medication - not so, I have always avoided pain meds like the plague for that very reason. I've since given in, because I can't make it through the day without them, but I would by no means consider myself addicted. I've had a lot more addictive things in my lifetime; 5 years ago at 18 years old I was a chronic meth, cocaine, alcohol, crack, etc. user until my car accident. Spending 6 weeks in a hospital bed in your parent's living room will change your life. Since then, I only drink once in a very great while and have even avoided OTC medicines; I obviously don't have an addictive personality, I've done so many drugs and never had a problem when I quit, but my family keeps an intense eye on me - I know what addiction is and I am not addicted; besides, my Mom brings up Rush Limbaugh ALL of the time.

    Anyway, I'm just glad I switched PCP's. My new doc is a wonderful human being, in addition to being a wonderful doctor; finding one is rare, finding both together is almost unfathomable. Hopefully I'll hear from the neurosurgeon soon on getting an appointment. Every day I seem to get just a little worse; I feel worse both before I get out of bed and right before going to bed; the days seem to be best for me. Did you happen to have that, too, Marcia? I'm interested in knowing just how your symptoms progressed. Did you have back pain? How did your neurological symptoms begin, and how fast did they progress? I know yours is different and was in a different part of your spine, but hearing from someone who has something similar is nice, especially considering these things are pretty rare.



    Is there anyone else out there with similar malformations? I'd be interested in hearing from you...

    Last edited by Christie_Ewers; 10-07-2005 at 02:35 PM.

     
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