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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
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!





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