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Brain & Nervous System Disorders Message Board


Brain & Nervous System Disorders Board Index


Hi michelle,unfortunetly i have to be somewhere soon so i cannot get into as much deatil as i would have liked,hopefully i can do that tomorrow,but i did want to hit the highlights here for you anyways.one thing,i never said that you get the worst headache of your life when you actually just 'have" an aneurysm.that type of extreme head pain only happens upon an acutual RUPTURE.big big difference there believe me.i actually had no real head pain ging on at all before my aneurysm was actually Dxed.i just had more really freaky neuro head symptoms like heat rushes that went down the back of my head and just feeling'off'?like something just wasn't right inside my head.i also had changes in some rather freaky(but normal for me because of my spinal cord injuries)facial sensations that started to get stronger,thats when my NS sent me for the MRA just to see if i may have an aneurysm.i also have a kidney disease that also made me born with narturally weaker vessel walls.i also was born with whats called a cavernous hemangioma inside of my spinal cord.this too is another form of a vascular malformation.which is what an aneurysm actually is too.

this is actually one possibility that could be your type of 'lesions" there are many possibilities for lesions inside the brain,but the cavernomas and also whats called arteriovenous malformations,or AVMs are also another possibility.i really do think,number one,you need to have an MRA,and number two,start seeing a good neurosurgeon vs just a neurologist.trust me on this,i have had to see plenty of both types of specialists over the years for various reasons and in my book,you just cannot beat the overall knowledge and plus the "innerworking' knowledge of a neurosurgeon.they win with me.a neurologist is great for treating headaches,but for any actual 'thing' you may have inside of your brain,you NEED the knowledge of an experienced NS.

you will probably get referred to one at some point so why not do it now?they just really really understand so much more of the more subtle signs and symptoms that occur within the brain and the c spine.iwould never let any other type of specialist,even my ortho who is fantastic with my knee,go near my c spine.its just way too messy in there.

but at any rate,your next step is to find out just what those lesions actual consist of.so he told you that it was indeed an "abnormal 'blood vessel?this could indicate a possible AVM or even a cavernoma but cavernomas are venous fed,and avms are arterially fed.big difference in pressure there.i definitely think an MRA which highlights the arterial structure only would really be of a huge help here in determining just whats up with the abnomal vessel comment and also the possible rule in or out of AVM or even aneurysm.some aneurysms just don't show well upon MRI,mine didn't at all.it took that MRA to actually see it jut because of the position.

one other thing that makes me wonder about a possible AVM or even cavernoma(which would NOT actually show up on MRA because of it being venous not arterial)is the fact that you have had symptoms for so long.these are actually normally a congenital formation that you are actually just born with.i had this glob of blood vessels inside of my spinal cord all of my life but did not know it til i had to have an MRI done on my c spine to determine which disc i had herniated.it showed up right inside my cord on the MRI.this was around age forty.

do you actually have in your possesion,a copy of the MRI? if not,get one,you need to start keeping your own set of your medical records for many reasons.

well i hope i was able to answer at least some issues here for you.i do have to run tho.if you have any other questions,just hollar.marcia
Sorry feelbad i must of misunderstood...but i am in the worst pain when this TN hits. i cant even move. all i do is hold my head and cry sometimes scream. and ive had 2 children both with no pain med so i can endure some pain but not this.

Well this is the thing...i went in there telling the neurologist my symptoms and i told him how i had researched trigeminal neuralgia for many years but could never treat it. he said i pretty much diagnosed myself. its when a blood vessel comresses on the nerve. i really do think this is it. He put me on Tegretol to see if it helped so then we would know for sure and sure enough in 15 years of having this stabbing pain on a daily basis they stopped with the tegretol. i never felt better. i felt like i had a new life. and then once i went up on my doseage to a whole pill twice a day within 2 days i was head to toe in hives. So sadly the only thing that kept the pain away im now allergic to and can not take. im at the point where i dont even care. if hives is all ill get i would consider still trying to take it. but i was told my throat could close or something. They have now raised my doseage of lyrica. im at 300mg a day and its ""so so"" working. i just cant go outside when its cold or within minutes im down. i specifically asked if i had a tumor or aneurism and dr and neuro both said no.
i dont understand how i had an allergic reaction to a med almost 2 weeks of taking it. i would think it would of showed within the first couple days.
And your right. i do need to find someone im confortable with. i was not happy with my neurologist. i asked my drs office about it and they didnt feel he did the right things to rule out MS and they said they would send me elsewhere. they said they want a report of saying 100% i dont have it. My regular dr is great i really like him.
i have kept my reports and i do have my films here of both cervial and head.
The MRI report said i had a lesion on my left temporal lobe and there was one on the back and one on the right if i am remebering correctly.
The neuro said its not MS cuz the lesions run in the opposite direction that MS would. when asked what they are caused from he said "We dont know. the report says Non-Specific"
I dont like hearing i have lesions and theres no answers. Also my c-2 c-3 are severely out of place. when i touch the back of my neck you can feel it bulging. when he looked at me xrays he siad it wasnt bad at all. i also have a herniated disc..c-6 i believe. When my dr got my report before sending me to neuro he read the report and said abnormal signal were being sent to my brain. i dont understand any of this. The MRI was done without contrast. i personally wish they would of done with the contrast.
i go back to my dr on monday (due to me falling down my stairs and "spraining" my ankle. i think its a fracture.) so im gonna talk to him and see what he thinks. Wow i have had the worst bad luck lately haha......

Please correct me if i am wrong but i was going to a chiropractor for neck until i was told not too and while i was there they played a video about bones being out. I heard them say on that video that if your neck is out then it causes signals to not reach the brain correctly. so now im wondering if thats what they are caused from.
Arent nerves mis firing the cause of lesions?
im taking your advice and asking to go see the neurosurgeon again. neurologist didnt put me through any testing for MS. it was like he was just guessing.
Thanks
sorry i am reallly running late here this morning but just wanted to clarify a couple thiings for you.by the way,i am trying to type fast here so please don't hold the spelling errors against me K? my lleft hand dosent wwork so well.

fisrt,yes big yes on that neurosurgeon,you are NOT getting any new answers from this doc and he will never ever change whatr he has set inhis mind.you do need a freash perspective.nerve misfirings do NOT cause lesions.most lesions that are actually found in the brain are mostly congenital or form over the years from vesse; problems not nerves.your lesions,and it sounds like this is actually IN a vessel??am i wroong here?tho is may not actually be an aneurysm,it can be a host of other issues.like an AVM or cavernous hemangioma.there are alot of different types of lesions so it wouls really take that NS and possibly an MRA where they look at the arteries.a cavernous hemangioma tho would not "light up" since theses are actually formed inthe veins and not arteries.it would be interesting to see just whther or not this actually would indeed light up in a scan.this current doc should have identified these lesions by now,this really IS ridiculous,really .an MRA would have told him alot.

i am not quite clear tho as to why you think this may be MS?is it just the lesions themselves?i am wondering since MS 'normally' wont present the type of pain you are having.i would have to do much more research on MS to really give you a really informed answer on that,but just from the people i know who have it,that pain you are having sounds like something else entirely.

do not take that tegratol again as they are right,the reactions become worse and worse and you will eventually end up in full anaphalaxis.trust me,you don't want to go there.it will end up bad.hopefully they can find another med that will work.there are many many anti siezure meds out there you can try other thn tegratol,trust me.

well i have to go or i will be threatened with harm from my youngest who need to be somewhere.i just wanted to at least give you something here.getting to a brand new NS not neurologist re4ally will give you the best overall evaluation and care.they just know sooooo much more than an any neurologist possibly ever could,simply because they actually go into the areas they are talking about not just look at it from the outside,you know what i mean?please keep me posted michelle.and stay the heck away from the chiro,please????he could reallycause you many more problems than you are already dealing with right now,truely.good luck hon,marcia





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