I have had full blackouts since the 2nd grade where my eyes go black and my body runs toward things. I have asked many doctors over the years and they don't know and accuse me of lying so I stopped bringing it up.
I have had urinary incontinence in middle school where I peed on myself in class and couldn't make it to the bathroom on time. That lasted 3-4 years and was horrible. I was very good at hiding it... always brought a jacket to wrap around my waist and wore dark jeans. My mom was embarrassed of me and did not think it was medical when I tried to talk to her, I just needed more self control.
When I was 12 I started producing breast milk which scared me to death, I thought I was pregnant even though I had never been with a boy. Given my families reactions I always kept it a secret. My dad got mad at me for having an ear infection and needing the ER... so I kept everything about my health secret.
My fingers would twitch all day during class when I was in school and it scared me. I went every day thinking I had a brain tumor for years and gave up on everything. I thought when I was near dying my family would finally notice.
I was sent to a mental hospital 3x because I was tired and looking for medical help. I threatened to kill myself to try to get access to medical care or to end up dead because I was tired of living at this point walking around in a black haze and failing all of my classes. I passed out there but after an EKG nothing was determined to be wrong so they didn't pursue it. I just wish I had had supportive parents.
I have a herniation of 6mm. My neurosurgeon said that Chiari malformation would have been caught during childhood - I know better... and he wouldn't even let me bring up things that did happen during my childhood.. but he is trying to say I have Psuedotumor Cerebri and it's not my Chiari at all even though it's there. He refuses to do anything until I lose weight. That's ok by me, I am trying to find a specialist anyway. Also nobody will scan below my thoracic spine and no CSF flow MRI. My opthamologist said it is probably my Chiari and not psudotumor because of all of my symptoms and no real headache. I get mild headaches. I do have mild papilledema.
They are not really checking me for associated conditions or anything... and recently my SED rate was 117.
I guess I am looking for help or somebody to talk to. Any input is appreciated. I don't have any family left to talk to =/
Hi...goodness many of the issues u mention can be linked to Chiari or a related condition....such as the lactating could be a pituitary gland that is being compressed by the tightness in there....
The incontinence can also be Chiari or a related issue such as tethered cord.
As for supportive parents, u can not blame them as they r going by what the Drs are telling them....and there are far too many Drs including NS's that have no idea even once they find Chiari how it really affects us and how to treat it...I am sure once ur parents find out what ur DX is and understand how it is affecting u they will be supportive....but keep in mind they may also feel some guilt...so it may take a while...
Know that u r not alone and there r so many here that have felt like u have...and we r all willing to chat with u <3
Find a true Chiari specialist and u will get the right testing .....but keep in mind u may have to travel to get to one, it may be in ur state and it may be out of state.
I just posted a question myself. I am newly diagnosed but there are members of this community that are a wonderful source of knowledge. I've heard of drop attacks which maybe could be what your experiencing. Or maybe a seizure?? A pituitary tumor (usually benign) can cause prolactin (if memory serves that is the name of the fluid released from breasts that you described). If you were taking risperdal at that time to control psychological pathology, that could be the reason for the prolactin. That is a common side effect for that drug. If you find a specialist it seems certain they'll do a c spine and t spine MRI. Maybe they'll look at you CSF flow also. I'm feeling discouraged as well but let's both know that chiari can present in many ways. My chiari friend didn't even have headaches at all! Her sys came on suddenly and during her flare ups she appeared to be having a stroke! No one thought it was her chiari which was 6mm. One NS thought differently and decompressed her and the stoke sx's are gone!
My parents are gone ... they died years ago. I am coming to terms with never being able to tell them and knowing they were neglectful. They never took me to the doctor and always told me I was lying, so I had absolutely no help. I was trying to explain that when I said my dad got mad at me for having to go to the ER with a very painful ear infection. He yelled at me saying we can't do this anymore. I remember crying and blaming myself on the way there.
I feel like I am in a nightmare because my primary care doctor isn't referring me to anyone else because I have my golden ticket diagnosis... and my SED rate was 117 and they say it isn't anything... but I have read it is dangerous. She doesn't do anything to help or even take me seriously...
I recently had a horrible hell of the past two months, I felt like I was having strokes every day numbness and tingling in half of my body and whole body jerks and tremors and just kept going... no real headaches... but I had a week where I couldn't swallow I was choking on food. a neck brace stopped all of my symptoms but all of the doctors think I am crazy now. I asked for a referral to see about EDS and a month later and no word from my PCP and my Neurosurgeon. =/
Oh I am so sorry....but my parents said the same things to me, but it was what they were being told by the Drs that they did question....so since u can no longer ask ur parents, it is possible they did what they felt was best and release that so u can not have that holding over u and add to how u feel now.
I had a drop attack in from of my mom and sisters, when I was aware of what was going on my sister was kicking me telling me to get up and my mom said what was I trying to do? I was not taken to a Dr either...but it is also the way my parents were brought up..and when I was young there were no MRI's to locate Chiari as a DX...so even if I would have gone, they would have told me I was anxious and put me on meds which is what happened when at 17 I went to the Drs on my own...they sent me to a shrink...Chiari is not a new DX, but it was always found after the person was deceased...and med students get 5 mins of info on it,..most of the info is that Chiari is asymptomatic....which we all know is not true.
Does ur ins require a referral? If not, find a Dr on ur own...we have a list here ...it is not a referral or an endorsement...but here for u to use as a tool to research Drs and find the best one for u.
I'm sorry to anyone who has to be mistreated by family and doctors :s
I guess I need to try to get to a chiari specialist a.s.a.p. It is just a rollecoaster because I thought I finally knew what was going on with me and now there is more to find lol. I am really having such a hard time coming to terms with everything I guess everyone here is...
I just wish I could not be looked at as insane anymore... or when the doctors think they know everything and say no that doesn't sound right or plausible. =/
I know how u feel....my parents are still with me, and they had a hard time with guilt...feeling it was their fault and I know it wasn't...they did nothing to cause me to have this, nor could nething have been found if I had gone to a Dr back then...and the ones I did go to for yrs on my own found nothing...it wasn't until '07 it I pushed the hardest to find out, but as it was I found out in Feb of' '08...surgery in '09....so it can take time.Even when u do have a DX it is best to move forward slowly.
The shrink I was sent to when I was still in high school would say....u do not have a brain tumor( with out ne testing) u r not going to die, and what do u want to do when u get out of high school...every time I went to see him...3rd time I said, I am not sure what I am going to do when I graduate, but I know what I will not be doing, I said I will not be wasting my time coming here...I got up and left....ugh...
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