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?

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

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

:wave:

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

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

Hi

I had my appointment today. Neurologist was very helpful this time. I took your advice and talked to him about an MRA which he ordered for me.

How does one know they have an aneurism? do you have symptoms or is it found accidental?
Since i cant take tegretol anymore (which helped) he is now putting me on a muscle relaxer that is also used for TN. I cant remember the name of it though. Ill post it when i get it from the pharmacy.

How do they do an MRA? isnt it done the same way as an MRI? or do i need dye?

Thanks so much for your advice!!
Michelle

again not much time here.(story of my life really) the MRA IS done basically the same way as an MRI,any actual technical changes come at the tech end not from you.you just lie there same as an MRI.this would really be the best test,other than an actual angiogram,to tell you what you do need to know.an MRA IS pretty definitive.

some aneurysms are indeed found as incidental findings when they are actually looking for something else and it just happens to show itself.some people will get a host of symptoms ranging from anything neurological to real nasty headaches but then again some will show no real symptoms at all. the only real symptom of the actual anurysm that i really had was heat flushes up the back of my head and some really obscure feelings in my head just subtle feelings.my big problem tho is that i just have sooo many other neuro issues that could easily have explained it all away.i just happened to have a very thorough NS who knows my kidney disease history and the fact that i also had another vascular malformation in my cord.my kidney disease,for some freaky reason just made me born with naturally weaker blood vessels.

the nature of any symptoms really come down to the size of it and the location.it is very highly individual in every case.some people will really not have any actual symptoms.this can be a very highly "silent but deadly' condition.i know personally three people who have died from an aneurysm rupture who never had a clue that they actually had one.thats kinda scarey in itself.but YOU are taking the right steps here in finding out what is really going on.honestly,from what you have described from your MRI,it really sounds alot like an AVM,which is just a tangle of blood vessels,but it could just be normal enlarged blood vessels due to some level of some sort of a blockage or restriction that is not actually allowing the right amount of blood flow.who knows.you WILL know much more post MRA than you do now,and thats key.

Just an FYI here but if the muscle relaxer doesn't work for you,honestly,there are a huge list of other anti siezure type meds that you can try.just becasue one stopped working or you got side effects does NOT mean you should stop trying.every single anti siezure med out there is slightly different from the last one,trust me.just a thought.please let me know how things are going .good luck,Marcia

Thank you so much for your replies. this means a lot to me to have someone to discuss this with.

When i was talking with the neuro he showed me a list of medications used for this TN. tegretol was the first. The second best has almost the same stuff in it as tegretol so he was leary on putting me on that. He said i would probably have a reaction to it. So this muscle relaxer was the next med down. then there are only 2 left after that. so im praying this works. Ive been on other antiseizure meds for this Topamax and Lyrica and neither one worked. Topamax made me crazy. i was in ER 3 times in 2 weeks because i thought my heart was gonna stop. Then i went again because i thought my body was full of swollen lymph nodes. Crazy huh??? so dr instantly took me off that. These were PA drs that tried me on whatever they could. then when i switched to my NY dr he got the ball rolling and rapidly refferred me to the neuro. Im not one to go the dr. This past year was the only time i actually tried getting this pain figured out. other than that out of 15 years i tolerated the pain without going. I had just figured they would pass it off as undiagnosed migraines and send me on my way so i never bothered on going. The only time i went to dr was to deliver my children. I now wish i would of gone sooner to figure this out and by now i would probably be pain free and living a good life.
Recently the pain has been starting on my right side. Both sides never hurt at the same time (thank god) and that has the neuro concerned. But..he did mention something about my jaw. I do have TMJ. i go to a dentist to get xrays in a couple weeks to see how bad it is. I do feel alot of pressure and when my jaw cracks i feel that same pain. He thinks my jaw may be adding to the TN and causing it to be worse off. When i open my mouth my left side pops out about 1/2 inch and then i have to shift my jaw to the side to get it close. My right side last week hurt so bad. it was hard to eat. so im wondering if it is my jaw. its just weird that that right side started hurting at the same time i had the head pain.
My mother had severe migraines and so did my grandfather....I think this may be something that was passed on to me. With my mother they said it was hormonal so she lived on painkillers i remember her being severely ill with them and then one day they just stopped. TN goes into remission for days months or years. She told me the other day that shes been getting them again and her face goes numb and burns and i said "thats what mine does" so we are now linking this to a genetic thing. She said she remembers my grandfather pacing the floors just holding the side of his head in agony. So defintely its not a hormonal thing if my grandfather went through this lol We have tried going back further into the family to see if his father or grandfather had this pain but no one knows for sure. So if my MRA comes back normal then im sure this is hereditary.
I may get my son in for another check up. He is starting to get headaches. only a couple times a month but i keep asking where and he says his forehead. He was sick with a cold so im thinking it was probably sinus pressure (i hope) ive had his eyes checked and hes 20/20 dr. said just to watch it and if it intereferes with school then its time to get them further checked.
Thanks again marcia....if it wasnt for you i wouldnt of even gone back to the neuro and demanded a MRA. No one was gonna look further into this. he wanted to put it off until i tried all different meds and if it worked he wasnt gonna order the test and i thought of you and then i said "No i would prefer have it done now" and he wrote it out. So thanks again... and ill keep ya posted on how it goes.
Have a great day!

Well i had my MRA about 2 weeks ago and i called their office 2 days after the test and she said the report was on his desk sooo she said no news is good news. and that was 2 weeks ago. She said they would call if anything was wrong. i go back to see him on the 13th. Muscle relaxers are working
so-so. i wish they would totally. but oh well..its not near as bad as it used to be so i should be thankful!