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Chiari Malformation Community
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Avatar universal

Psycosis?!! Please read!

So after my 4th confirmation and  3&4th MRI's......the specialist comes back with both, only a few minutes about the Chiara. because he said the findings on the other MRI are what he would be concerned about...."Spots" on my brain, he says its psychosis. This is a VERY short version of my question and experience at the specialist. But for now I just need what THIS FORUM does best....allows me to learn from others who know how I feel.
Thank you in advance :)
12 Responses
Avatar universal
Forgot to include the question! Was wondering if any of you have had "spots" or have been told what I was?
5640779 tn?1375813366
First of all don't panic. I know it sounds scary. The term Psychosis is a general term in this case and it can include things like Schizophrenia, Bipolar, Parkinson's, and drug or alcohol abuse...etc. It may be something long or short term. Yes many of these things can be seen on MRI's now, however are you sure he didn't mention anything about your grey matter? White spots can be associated with MS sometimes and Migraines can be seen by spots on the brain as well. Without knowing more about your clinical visit, I would say your Dr could suspect one of the above mentioned conditions based upon your MRI findings along with your history, and symptoms. I'm just curious, you said third and fourth.... Did your previous MRI's show different findings? Did the other Dr's disagree with this? Also please keep in mind that often times in our search for answers we do come across what is called incidental findings. These are usually asymptomatic. Chiari can be discovered in this way as well. (Found on MRI while looking for something else). Sometimes getting our answer is like  putting together all the pieces of a puzzle. It can be a long a frustrating road we all know too well. Hang in there and I hope you get your answers soon :-) Lisa
Avatar universal
Lisa, thank you for responding!! I  was diagnosed with Chiari 1 Malformation w/6mm drop earlier this year after having  an MRI  "just in case" because of my migraines getting so much worse, so thank God I did. That was through my PCP. Went to 2 different neurologist that were  "so-called" Chiari specialist as well. Neither of them knew anything about it, literally. Went out of state to a real specialist. Had 2 more MRI's done, brain w/contrast for the 1st time...that is the only time anyone has mentioned the spots. He was VERY short about the Chiara, and to be honest, after hearing the word "Psycosis" and "Need to see a psychologist", I FREAKED! My husband, my sister and my mother in law were there. I guess I just kept over-talking everyone, including the Dr. at that point. My sister said she has never seen me act anything close to that EVER. And to make it worse, afterwards I really couldn't remember or wrap my head around the fact that I waited so long and was so anxious to see this Dr. and finally have answers to my questions & some sort of understanding about my Chiari and the next steps to take. I was very upset and VERY embarrassed  for a while, still am, but I finally spoke w/my sister and my husband for them to explain to me exactly what happened. ;( So me acting that way I am sure made him feel 100% right about the Psychosis. So at this point, my husband says I need to see a psychologist BEFORE I go to another Dr. for the Chiari. Even though I know my husband and sister love and want nothing but the best for me, I feel like they don't understand that this is happening to me. So they can tell me what im supposed to and I understand they are right BUT im the one who got diagnosed and has been running around circles looking for answers, feeling all the pain and numbness and confusion and 500 other chiari related issues, im the one who freaked out like a weirdo at the Specialist  and because of that  I also didn't get ANY of my questions answered which means no matter what they heard/seen, I left there with NO answers and feeling like all they think is that  im crazy, on top of everything else. No one understands. I am a 30 year old woman and feel like a confused child. I will ask my sis about the color of the spots, I am not sure. I  personally think (hope)  that the fact I had  next to NO sleep for almost 4 days before my apt due to the fact  I was the most stressed I have ever been, literally I was a nervous wreck,  could have caused my "snap/freak out like a crazy person?!
5640779 tn?1375813366
Aurora, how cool. I grew up in Joliet! Well after reading your last post you sound like me. I do understand this is scary stuff we're talking. I don't know where you've been so far but here is some info that might help you. Also, we are all scared and we all feel alone at times. If you are crazy, we all are! Nevertheless, we are in this TOGETHER :-) Lisa

Chicago Chiari/Syringo Support Group
Fred Jacobeit
708 370-2463
***@****

Dr. George Bovis NS
Elk Grove 847 956-5428 or
Park Ridge 847 698-1088

University of Chicago
888 824-0200
1891806 tn?1391119037
First let me say "thank you". You have validated that I am not crazy because your doctors sound like mine. Second, you're not crazy. I have had 4 MRI's and told I had scattered white matter lesions, one large white spot on the brain and a 6mm hermiation (Chiari 1). All of the neurologists and neurosurgeons have said none of the above are serious or should be causing my symptoms. I have been referred to psychologists and told maybe it's just stress. Trust me...you're not alone.

My symptoms are bad and getting worse, it's a struggle most days to stay sane through the pain. The wonderful people on this site have taught me that we area own best advocate and to keep pushing forward...even if it means finding a new doctor.

As Lisa said...we are in this together.

5760202 tn?1373759290
Have been seeing Pych Md for over 10 years now, and honestly the antidepressants and anti anxiety meds, and sleep med Have literally saved no only my like ( had a seriously low point yrs ago, plus post partum is rough)but my marriage as well. I cope so much better with them on board.  But that does not mean the Chiari needs to be overlooked or downplayed. Where do you live. I am seeing Dr rosner NS. But First saw Dr. Flecha who is literally next door who was the one who found the "soft neuro deficits" indicative of chiari that have been destroying my life by inches. See a good Psych but also keep searching for chiari specialist. thisis stressful stuff
5760202 tn?1373759290
I when to 3 diff "specialist" one neurosurgeon, one neurologist, and had a neuropsychcologist who flat out stated in various ways I had, in order, pseudodementia, was malingering, overplaying or exaggerating my concerns all in my head, and needed to see my psychiatrist to get my meds adjusted despite my very good Psych MD who I have seen for years and I deeply respect saying I am not Crazy. She is the one who witnessed me searching for words, slightly slurring my speech, ect.
5760202 tn?1373759290
some time you need to be your own best advocate...
620923 tn?1452915648
COMMUNITY LEADER

  Hi....It appears that this Dr one- is not a true Chiari specialist....2- can  be something related...some headaches can cause spots.....but , with more testing which is indicated u can rule out other issues like MS....which most Drs look at with those of us with Chiari symptoms as they are similar.....

Too many Drs want to tell us it is anxiety or as some say ALL in OUR HEAD...and yes, it is just not the way they indicated....so do look for a Dr well informed and experienced with Chiari.

See our List of Drs....and research them.,...u may need to travel...but it is well worth it...

Keep us posted.
Avatar universal
Thank you to everyone who responded!!! I was almost done responding as well with my answers to your questions AND my questions to your answers, and somehow managed to hit the wrong button at some point and deleted it! ;( So don't think I am ignoring your responses after asking you for your opinion.. I just need to learn how to type apparently! (LoL) Anyhow,  going to re-type everything in  a little while. Thank you again and sorry so delayed!
11247271 tn?1416534598
.. I have had this for a while now... only to much more extremity ..could this have anything to do with psycosis

I hear a constant  high or low or high and low frequency.. breathing constantly changes, feels like the air im breathing through my nose is different than my mouth, and depending on how I breath may effect diffent parts of the body.. Started with little twitches, but then started linking to different parts of my body.. my  finger would twitch , then my chin, then foot etc,, its like it bounces off each other... It got so bad I looked in to possession lol, Im very down to earth guy with a very very creative mind and over active imagination... but  I don't know how that could have made the symptoms I have now... I literly felt shapes around my body, It felt like things were being pushed into my body. almost magnetic things. .. I would get vibrations from my foot to my head, hallucinations sometimes... If I touched something that finger would vibrate.... at one point if I swallowed, the drink would come up back out of my mouth, or food not swallow,or the opposite and fly down and make me choke almost... I don't drink ir recreationally use any drugs or party any more, and effects seem to slowly be reducing, but it constantly feels like my body is not in sync with my spirit, I internally shake, and tend to have to sleep a certain way or my breathing gets funny, almost forget to breath sometimes then suddenly... phwaaaaaaaaa    a reflex breath..  this is just the beginning.. the crazy thing is, doctors and hospitals test fine for blood pressure and everything else, which then ked me to reading into a more spiritual side.. the thing is from what I gather  When ever I think its like my mind floats away, and eyes wonder.. .. is 50 symptoms I have can be one thing or another, or a spiritual awakening, or some kind of pessesion, or anxiety, .. etc etc....  lol just thought id share that.. any ideas?

246139 tn?1424371973
Deaner124124, I would start a new thread and ask your question. Many people do not read the older threads. This one is from last year.  :)
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