FeelBad...Question for you - Brain & Nervous System Disorders Message Board

Michelle1977 · 12-29-2006, 10:23 AM

I know i may be over worrying but.....for many years ive had headaches..they started out dull about when i was 15 and for the past 6 years they have gotten severe..severe enough to make me not wanna move..one sided (left) into eye temple and behind ear. I noticed as these got worse pain would radiate through the side of my head when i touch my nose and cold weather set it off even worse. Well i finally got insurance and had my MRI done one of the head and one of the neck..My head MRI came back showing 3 lesions (They ruled out MS due to lesion running a different way) and it showed some abnormal signals. Well i went to neurologist and he said lesions were non specific..i wanna know what they are from...any ideas?

Anyways...he diagnosed me with Trigeminal Neuralgia and im now on tegretol which seems to be working well so we are sure that it is TN for sure.
What i wanna know is if you are familiar with that...you said in another post you get the worst headaches of your life with this aneurism. and TN is also considered as worst pain known to man. I was told TN is cause from an abnormal blood vessel pressing on the nerve and also from a tumor. Dr assured me there was no tumor or aneurism...Should i let this go or go for more testing?

feelbad · 12-31-2006, 08:15 AM

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

Roy47 · 01-03-2007, 10:21 PM

This could also possible be a Arnold Charie Malformation or ACM1. All of these things that have been said for the most part are all the things that go along with this. IT is 3 times more likely in women and from what I have read it is as well developed much like aneurysms while you are still in the womb. It is thought to be perhaps from a mineral that the mother is missing or perhaps it could also be passed down from generation to generation.

How do I know about this? I was diaganosed this lat spring in 2006 of being a Charian. I have spent alot of time looking at this subject and I am sure that I have just touched the surface.

I also agree that a neurologist is the top pick as well for further options. One might consider seeing a Spine Specalist as a possiblilty...

Roy

feelbad · 01-04-2007, 07:09 AM

sorry to hear you have one of those things.i just wanted to mention something tho,the aneurysms are not what is considered to be a congenital malformation.i think what you are actually thinking of is what is called an AVM? or arteriovenous malformation or even a cavernous hemangioma.these two things ARE congenital malformations,meaning you are born with them.and they both suck as i am sure the ACM that you have does.Just a little FYI for you.good luck with your malformation Roy,marcia

Michelle1977 · 01-12-2007, 07:45 AM

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