Hello everyone,

My name is Dolores (or you can call me Dizzy ). I've lurked for awhile, but I wanted to join because I need a place to talk, and feel comfortable since I don't know where to go until I get more answers this Wednesday after seeing my sister's neurosurgeon.

Hope I can learn a lot from you all. I cried a lot last night and asked God to please help me because I'm scared and I don't know what's going on and how bad it is or can get...but I just want answers.

Hi Dizzy

Welcome to NeuroTalk .

I hope that you will find the community as knowledgeable and supportive as I have.

Please just "jump in" and share your story in whatever forums meet your needs.

Best wishes.

Thank you for the welcome. I am a little frustrated at the moment because the neurosurgeon appt. I was supposed to have this morning, had to be rescheduled

I'm not happy. My head hurts, and I have these weird, and painful sensations like electric shocks under my skull.

Any-who. Thank you for the welcome.


I'm not sure where to start...but my headache issues started in 2012 (really, my headaches started as a small child!!!! YES, REALLY).

As I stated back in 2012 or 2013 I first knew something was wrong when clear fluid kept leaking from my nose like a faucet for an entire week. I thought it was just post nasal drip and didn't do anything about it (I'm now wondering if it was cerebral fluid). A week or so later, I was in our company lunch room after coming back from vacation) and my nose just started spouting blood out of nowhere and would not stop. I went to an urgent care center because we could not get my nose to stop bleeding (I thought it was because I had just gone back on blood thinners)...My BP was out of control. This lasted a few days/almost an entire week.

I have NEVER had anything other than extremely low blood pressure...I've never had hypertension one time in my life...I think it was all of the stress from work and returning to work after a stress free vacation and returning to the volatile and toxic working environment I hated so much.

The doctors weren't sure what the problem was since they have never seen my BP so high, but they put it down as essential hypertension (I want that crap out of my medical record because it happened once...and I don't have HBP...jerks) and didn't seem to worry about it too much.

I went to see a neurologist about my headaches, he ordered an MRI and chalked it up to migraines after hearing about the aura's blah blah blah.

Started me on Topramax...doesn't work for me...he lowered the dose.
Started researching and found that my headaches started when I started drinking coffee and using artificial sweetners. BAM!!!! That was it. As soon as I stopped...I had the worse headaches for a few weeks...but I never had another migraine.

Fast forward--> I didn't have headaches for about 2 years until 2016 when the headaches started again. Went back to the neurologist last year to tell him the headaches were continuing...had a scan 6/6/16...he never called to give me my results...I called him, he never called back.

Went to see him again this year...MRI and MRA 9-1-17 results show Focal Encephalomalacia in the right parietal and occipital lobes that are stable...uhhhhh what??????

Why do I not know about this?????? What is this? No one told me anything about this supposed TBI...and this explains why my gait, headaches, and other symptoms are tied to some of the things I see in this report.

And the gag...when I called the neurologist 9/13 to speak with him about the results as he asked me to, his asst. said, he said, he will discuss them with me in Nov at my f/u, the results are stable from last June and to bring the disc.

UHHHH WTF???? Dude, you never told me my results from last June...so uhhh how do I know what they are, and what is stable??

Sorry. I am livid...and this is why I am bypassing him and going to my sisters neurosurgeon (she had an aneurysm and her neurosurgeon demanded I see him or someone since I have a clotting disorder, and wanted my other sister who has a stroke disorder and hypertension, and my mother who has hypertension, all tested).

I hope this is all understandable....sorry if it's confusing.

Here are some of the things from my -1-17 MRI and MRA report....

FINDINGS:
MRI: A few scattered foci of T2 prolongation in the cerebral white
matter are nonspecific and stable. Focal encephalomalacia in the right parietal and occipital lobes is unchanged, may be sequela of remote ischemic
insult. There is no intracranial hemorrhage, extracerebral fluid collection, midline shift or mass effect. No restricted diffusion to suggest acute infarction. No abnormal susceptibility. Mild cerebral parenchymal volume loss is seen.

Focal triangular ectasia of the origin of the left A2 segment measuring up to 3 mm is unchanged.

There are no regions of focal stenosis or aneurysm formation. Please note MRA is less sensitive for those aneurysms smaller than 4 mm.

IMPRESSION:
No acute intracranial abnormality. Stable cortical encephalomalacia
in the right parietal and occipital lobes, may be sequela of remote ischemic
insult.

Stable scattered foci of signal abnormality in the supratentorial
white matter, may be related to migraines. Differential considerations also include early sequela of chronic small vessel ischemia, demyelinating disease, sequela of prior CNS infection or trauma, among others. Please correlate clinically.

Stable triangular 3 mm focal ectasia of the origin of the left A2
segment, favored to be a vascular infundibulum over aneurysm.

*sighs*

I can understand your frustration with the neurologists. I don't know enough about neuroanatomy and interpretation of MRI scans to say anything helpful.

You could think about posting in the TBI/PCS forum (https://www.neurotalk.org/forum92/). It is very active so I am sure that you will get helpful thoughts from other members there.

As far as your clotting disorder is concerned, posting in the General Health Conditions forum (https://www.neurotalk.org/forum2/) might be helpful as well.