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Brain & Nervous System Disorders Message Board


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Hi all,

About a year and a half a go i started getting terrible headaches and collapses. normal mri scan. i started having seizures or pseudo seizures visual disturbances mood swings, inability to concentrate. a feeling of fluid around my head. I ended up in a and e several times. i had another scan three months later 1 and half cm lesion found seemed to be a pineal cyst that should cause no problems. then it shrank a bit etc etc. symptons got worse. one of the last reports stated if an event had happened in the spinal cord it may be signifigant. i have now been diagnosed with sacriolitis or inflammation of the spine.

My symptons still so bad. saw some neurologists all patronising telling me the cyst would not cause me these problems but provide me no further answers.
they don't know about the spine yet. Two days ago i felt something almost travel up my spine to my head explosive headache like someone had ratteled my head. also whenever i have particular meds the pain in my head gets worse?? im exhaausted diagnosed with sever anemia and yhad infection recently. i get achey bones too hormonal changes and chnges to the shape of my head. so my question is is this a cyst a tumor how do cysts and tumors behave. i also had excess protein in my urine all the time. What tests could i have done to proove the differance. or what can a doctor do about it anyway. why wont they listen????please help could it even be an absess. i cant carry on my life like this. They do not understand the severity of my headaches even when im in agonising pain. one doc found that i8 had increased pressure in the brain but decided it was irrelevant as i had seen so many neuros who are all backing each other up.


zoe
wow,you do sound like you have a few possible totally unrelted things going on here.one is the protien in your urine?has anyone bothered to do some tests on your kidneys?certain kidney diseases will cause alot of different types of symptoms but the key here is that they all start out with finding protien in your urine.i too have kidney disease and the very first indicator of that(which by the way,i just blew off too since i did not know the significance of it)was protien in my urine along with some traces of red blood cells.I found out i had polycystic kidney disease.you kidneys do need some further testing,preferably a blood test and an ultrasound.these two tests willtell you alot as to what may or may not be going on with your kidneys,but this has to be done since the kidneys can effect alot of different things in your body,including blood pressures.

now the increased pressure in your brain,has no one actually explained just why this is?i am also rather confused about the spinal thing in the report that states"if an evebt had happened within the spinal cord,it may have been significant"just what the hell is that all about??did no one have an explanation for that either?i have never ever heard that statement made before dspite the many significant things that have occured within my spinal cord,aong with 16 MRIs done over the past four years.

belive me,i can TOTALLY undrstand your frustration and total confusion,yikes even!Have you ever seen an actual neurosurgeon or are you dealing with just a bunch of totally clueless neurologists here?if you have anything more than headaches,please see a neurosurgeon,honestly,i have seen plenty of both and the NSs just have sooo much more overall knowledge of the inner workings of the brain and the spinal cord and how they work together and what actually affects what.you DO need a good neurosurgeon to help you figure this all out.

i would love to actually know just what in the heck is going on within your spinal cord and just what that rad ment by that statement in the report he made.a neurosurgeon would at least be able to tell you that.

so just what exactly has been been 'scanned" and with what type of tests?anything done with your c spine?MRIs on the brain,with contrast??these would be vital.along with having an MRA that would just highlight the arterial structures within your brain in order to rule out any possible vascular malformations.

just an FYI here too.having some sort of a problem within the c spine can also affect things within your head and brain as you do have some cranial nerves that do run down from the head,into and along the c spine where they go down to approx the c 8 nerve(while you do not have a c 8 vertebrae,you do have a c 8 nerve)and then loop back up into the head agin.so this would be possible just so you are aware.

but you really DO need to get the kidneys evaluated soon.there could be a problem there that could also be affecting other body systems.you need to know how they are functioning.

you mentioned that when taking certain meds,your pain in your head gets worse?just what type of meds are these that seem to trigger increased pain?would they be pain meds per chance?narcotics and some other types of meds actually increase head pressure within the brain.soo if you supposedly already have pre existing ICP,well taking these types of meds will just be adding more ICP to your brain.not good and could explain the increased pain,most definitely.

you really do need to get to a doc that takes your issues much more seriously and actually knows whats up within the brain and the spinal cord.that would be a good neurosurgeon,i reccomend that very highly.also,like I said before,get those kidneys checked asap.how have your BPs been,within the norm or a bit out of the norm?there is a very direct link between the kidneys and the BPs just so you know.
please keep me posted on whatyou find out zorm.geez,i really do feel for ya.you DO deserve much better treatment than what you have been recieving from the idiot neuros.you most definitely need to find out about that supposed event that took place within your spinal cord.I cannot even begin to think just what in the heck the radiologist ment by that one.just plain wierd.good luck,marcia





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