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Spinal Cord Disorders Message Board


Spinal Cord Disorders Board Index


ha, found ya. thanks for the heads up jen. hi binx, so what i am actually wondering here, is that "syrinx"(just going to abbreviate that very long word,lol) actually simply a cut off from flow of your CSF in there becasue of what sounds like a pretty messed up c spine level or is this actually directly IN your spinal cord? this 'placement" simply 'does' make a rather huge difference in outcome and also any possible damage that could be done to your cord if they choose to resect this or reintroduce CSF flow? if this is 'only' CSF that is entrapped, that is wayyy better than having ANYTHING at all actually 'in' youer cord. thats why i am asking.

i am VERY glad to hear hat you did obtain way more than one opinion and also did NOT stick with a mere neurologist for this as far as taking anything he may have stated to you as 'what this really means' for you too? alot will depend upon where this fluid actually just 'is' and what a really good and most importantly 'experienced in what YOU happen to have going on' type of NS will want to do here to try and correct this as much as possible with doing the least amount of harm to YOU.

i am really kind of shocked that any neuro would have not checked into this area much deeper with like at LEAST a contrasted MRI or even the deepest type of MRI called a 3 tesla scan, but would simply Dx possible MS based upon only ONE area being like this? the 3 T scan just uses three times the magnetism of a standard MRI and does get much better/deeper pics too.

tho it does sound like you ahve a rather long running area of bugles here and there, what IS the worst area where they want to actually do that decomp/fusion at?

you just need to find out ANY real risk factors for doing that fusion surgery as far as what will occur with that basically what is a big flow void you have thewre? find out what they can also do to remedy that area or if that decomp fusion you now want to have will actually take care of that? also, considering alll of your many symptoms you just have going on in your body here, make that neuro TELL you(and DO write this down while there or have someone with you)exactly what symptoms you are having actually correlate with what specifoic level and how truely impacted those areas just are right now? and what will occur if you do nothing vs something,then what possible 'somethings" are just good viable options in this c

i am still trying to really visualize this finding in my head here. i am very famiiar with the make up ofthe spinal cord since i had to figure out where all my damage was stemming from as far as spinal tracts that got pretty significantly damaged when they had to resect whats is called a cavernous hemangioma from right smack inside my cord, but just trying to figure out what states is only 2 mms but appears to run the length of the T on down to S? thats where i am really confused binx. believe me, it does not take much these days,lol.

just EXACTLY what does your latest MRI report state with regards to that hyperintense area or where you now know IS an actual flow void area created by bulged discs? at least that is what it sounds like you are explaining? correct me if i aqm wrong binx. how compressed IS your actual cord from this? is there ANY mention at all of the word 'mylomalacia" in that description anywhere in that report? have you been dxed with either myelopathy or hyperreflexia in either leg or both? you just appear to have ALOT of overall impact upon your body either created by this one thing, or very specific areas along the spinal that also sound impacted too in some way to at least some degree?

the best advice i can give you right now is to ALWAYS bring another person with you,and with a notebook too so THEY can write things down while you ask needed questions since we can tend to get hung up on certain statements made by our specialists and forget we NEED those answers written down too so we simply have them to look at later? find out what potential options you simply DO have overall to alleviate the more impactful findings with the least risk to your spinal and function.

oncwe i actually know a bit more detail here i can give you much more direct and specific advice binx. i do hope your appt went well tho. the main thing i need to know here is this IN your cord or OUTSIDE of it and 'only' being compressed by CSF with NO direct disc impingement that goes INTO that cord? that does matter too as far as what could be damaged or impacted if something is actually going INTO that neural tissue or tracts within the cord. i just need to kind of be able to really picture this inside my head here too, thats all.

i do wish you soo much good luck with this and hopefully the overall impact is nce and long and not a direct 'spot' going into your actual cord in THAT way(the cor can 'bounce back' a bit better the "long' way/vs direct, after compression is simply released holding back that CSF). i hope this at least helped you some. and DO let us know what you find out today hon. sorry i did not even see jennnys message til this morining. Marcia
[QUOTE=feelbad;4619854]ha, found ya. thanks for the heads up jen. hi binx, so what i am actually wondering here, is that "syrinx"(just going to abbreviate that very long word,lol) actually simply a cut off from flow of your CSF in there becasue of what sounds like a pretty messed up c spine level or is this actually directly IN your spinal cord? this 'placement" simply 'does' make a rather huge difference in outcome and also any possible damage that could be done to your cord if they choose to resect this or reintroduce CSF flow? if this is 'only' CSF that is entrapped, that is wayyy better than having ANYTHING at all actually 'in' youer cord. thats why i am asking.

i am VERY glad to hear hat you did obtain way more than one opinion and also did NOT stick with a mere neurologist for this as far as taking anything he may have stated to you as 'what this really means' for you too? alot will depend upon where this fluid actually just 'is' and what a really good and most importantly 'experienced in what YOU happen to have going on' type of NS will want to do here to try and correct this as much as possible with doing the least amount of harm to YOU.

i am really kind of shocked that any neuro would have not checked into this area much deeper with like at LEAST a contrasted MRI or even the deepest type of MRI called a 3 tesla scan, but would simply Dx possible MS based upon only ONE area being like this? the 3 T scan just uses three times the magnetism of a standard MRI and does get much better/deeper pics too.

tho it does sound like you ahve a rather long running area of bugles here and there, what IS the worst area where they want to actually do that decomp/fusion at?

you just need to find out ANY real risk factors for doing that fusion surgery as far as what will occur with that basically what is a big flow void you have thewre? find out what they can also do to remedy that area or if that decomp fusion you now want to have will actually take care of that? also, considering alll of your many symptoms you just have going on in your body here, make that neuro TELL you(and DO write this down while there or have someone with you)exactly what symptoms you are having actually correlate with what specifoic level and how truely impacted those areas just are right now? and what will occur if you do nothing vs something,then what possible 'somethings" are just good viable options in this c

i am still trying to really visualize this finding in my head here. i am very famiiar with the make up ofthe spinal cord since i had to figure out where all my damage was stemming from as far as spinal tracts that got pretty significantly damaged when they had to resect whats is called a cavernous hemangioma from right smack inside my cord, but just trying to figure out what states is only 2 mms but appears to run the length of the T on down to S? thats where i am really confused binx. believe me, it does not take much these days,lol.

just EXACTLY what does your latest MRI report state with regards to that hyperintense area or where you now know IS an actual flow void area created by bulged discs? at least that is what it sounds like you are explaining? correct me if i aqm wrong binx. how compressed IS your actual cord from this? is there ANY mention at all of the word 'mylomalacia" in that description anywhere in that report? have you been dxed with either myelopathy or hyperreflexia in either leg or both? you just appear to have ALOT of overall impact upon your body either created by this one thing, or very specific areas along the spinal that also sound impacted too in some way to at least some degree?

the best advice i can give you right now is to ALWAYS bring another person with you,and with a notebook too so THEY can write things down while you ask needed questions since we can tend to get hung up on certain statements made by our specialists and forget we NEED those answers written down too so we simply have them to look at later? find out what potential options you simply DO have overall to alleviate the more impactful findings with the least risk to your spinal and function.

oncwe i actually know a bit more detail here i can give you much more direct and specific advice binx. i do hope your appt went well tho. the main thing i need to know here is this IN your cord or OUTSIDE of it and 'only' being compressed by CSF with NO direct disc impingement that goes INTO that cord? that does matter too as far as what could be damaged or impacted if something is actually going INTO that neural tissue or tracts within the cord. i just need to kind of be able to really picture this inside my head here too, thats all.

i do wish you soo much good luck with this and hopefully the overall impact is nce and long and not a direct 'spot' going into your actual cord in THAT way(the cor can 'bounce back' a bit better the "long' way/vs direct, after compression is simply released holding back that CSF). i hope this at least helped you some. and DO let us know what you find out today hon. sorry i did not even see jennnys message til this morining. Marcia[/QUOTE]
Feelbad...sorry I am new here and I didn't get your real name, I have an inoperable AVM in my brain. I have been having severe neck and back pain over the past few months so my family doctor sent me to have an MRI a month ago and told me I have a Hemangioma at C-7. My family doctor said it was nothing to worry about right now but my neck and my arm is numb all the time. I don't know anything about hemangiomas and since I just had an MRI do you know if they can tell for sure it is just a hemangioma and not an AVM?





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