"Cerebellar Cognitive Affective Syndrome: Anatomy & Implications" - Jeremy D. Schmahmann, MD

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Dr. Jeremy S. Schmahmann talks about how disorders and abnormalities in the cerebellum may have an effect on affect, cognitive function, and personality in certain patients. He discusses cerebellar cognitive affective syndrome and some cases he has encountered over the years, including one patient who was thought to have schizophrenia but when treated for Chiari malformation (a deformity in the cerebellar region), had incredible improvement in psychological symptoms. This presentation was given at the 2nd Annual CSF Disorders Symposium jointly provided by Warren Alpert Medical School at Brown University and the Department of Neurosurgery at Rhode Island Hospital, sponsored by the Chiari & Syringoymelia Foundation.
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[@lorenrobertson8039]

You started out correctly when you stated that the doctors just do not listen to us (patients with this disorder and symptomatic). As a disabled/retired RN and a person that has a chiari I and syringomyelia, many related symptoms I found this lecture very interested. Only wish I could afford to get help or even mediocre healthcare. I fell through the cracks!

[@buragggg1]

Loren Robertson did you not have a decrompession ?

[@lorenrobertson8039]

No I did not. I have seen both an orthopedic surgeon (one I left immediately after I worked at the hospital rehab and saw his work!), and I made another attempt to get help from a recommended neurosurgeon that cost me a great fee after a long wait for an appointment. He came in to the room and didn't even examine me. Looked briefly at my year or two old MRI and stood up and said he was too busy to deal with me and left me just sitting there in shock. I even followed him down the hall where I interrupted him with his med students and demanded he take me seriously and finish our appointment that I had the right to with paying his expensive charge. He asked me to leave and had me removed from the office. It was very wrong. And it const me a great deal of money even after insurance. As a nurse and a human being I was appalled by his behavior. I was disabled too much to work much longer and with no income or insurance I have no discourse at this point. I live in such fear that if I don't get some sort of treatment to make my pain dr. money I will get fired from there and will not be able to survive with the horrid severe pain I live with constantly. I am very under medicated and recently was forced to have my medication for pain and even for my anxiety disorders lowered...with the excuse being that the federal government had mandated all dr's to lower our medications that lessen suffering. Like that is going to affect some drug dealers out on the streets. It really angers me...and I am glad that I no longer work as a nurse and have to impose suffering on my patients! God willing I will just get to go to Heaven soon and leave all this suffering existence behind. Thank you for asking...I tend to over comment, my appallogy and thanks for your concern Burak.

[@dana102083]

@@lorenrobertson8039 Im an RN too and likely losing it this year after 11 yrs of fighting. I believe i have a csf leak and its causing more neuro symptoms that are getting scary. Living in canada im getting nowhere. Everyone looks at my normal MRI and thinks thats everything. I bring journals and they throw them out in front of me. I bring info encouraging best practice..nope. I cant talk to a neuro radiologist or neurosurgeon..ive been told i will need to go to usa. I really hope youve met someone new since writing this 2 yrs ago xox

[@danashannon8234]

I am so upset.

[@danashannon8234]

I am a RN as well. The doctors kept ignoring me and told me I do to much research. I finally saw a neurologist and he didn't even do an exam other than have me open my mouth to check my airway type for sleep apnea or whatever. My symptoms were so bad. He charted he did this big exam . he did not touch me. I still don't know what's wrong. I see a Neuro NP in one more month. I have severe ataxia....my eyes dart here and there and now keep rolling in the back of my head too. I rarely drive. Double vision. Slurred speech. My brain feels like cotton. It won't clear up except with adderall will give me a few hours of slight improvement as in i am able to text this. They are missing something. And yes I have all these speech issues. Severe fatigue. I feel big time like my IQ has dropped and I graduated with honors 3rd in my university for nursing. I have had a CT but I have begged for 2 years for mri. Irs definitely cerebellar at the minimum. My daughter has been helping make recordings. I should have started this from the beginning. It would be nice to get an answer at this point its progressed so bad I suffer constantly. I doubt its chiari. But I pray this next Dr is experienced and will hear me. At this point she can't ignore the symptoms.

[@CouchSttr]

Reading through these comments is both sad and good; I feel less alone. I had a cerebellar tumor 27 years ago and was told its effects were just physical. Now I am seeing this, and it gives me hope that I can better handle my deficits so that I am able to live my life more fully. They have had significant impacts, and I want to learn to cope and adjust; just knowing there's a there there is a big deal.

[@AndyJK45]

I suspect the overlap between ADHD, Cerebellar Cognitive Affective Syndrome and Craniocervical Instability is much commoner than previously imagined.

[@dana102083]

I agree. I have EDS, which is a population which cci, csf leaks, chiari malformation among others, impact us greatly. I believe i have cci amd a csf leak and the symptoms I feel when my brain is crushing are very in line with this. So much so my bf feels like my personality changes into hysterics or panic, high anxiety, talking in circles, ruminant, paranoid and childish at times. When I feel none of those things and feel matter of fact with passion consistent to the issue Im trying to express. Its been 11 yrs of living with positional headaches and the severity continues to increase each year. When will a doctor take me seriously? Im an RN and I take my symptoms very seriously and by them doing nothing, I lose my life.

[@MsFitnut]

I was diagnosed with SCA6 on June 19th of this year 2018. I inherited it from my father. I have spent quite a bit of time researching and found it interesting that ataxia's are mostly spoken of with regard to movement and nothing touching on emotional adaptation, anger issues, and anxiety. My movement symptoms are slight and only noticeable for about the last two years, though, I would argue that the emotional issues I've struggled with my entire life are directly connected to my SCA6. I am looking forward to more research dedicated to the behavior, anxiety and emotional issues we suffer from.

[@thedarkone2444]

Have been diagnosed with a brain injury for approximately 7 years now, along with PTSD and severe depression. Although the doctors / psychologist couldn't explain or understand all my symptoms. Finally seen another neurologist 2 years ago, who diagnosed me with CCAS, "schmahmann syndrome". Reading up on it, has helped myself and my family immensely.

[@andiarcher9017]

my son. 14 has severe CCAS symptoms and a cystic lesion in the right cerebellar tonsil about the size of a golfball. If we have it removed will he get better? Our neurologist says that his cyst is not causal for anything

[@carolyntaylor7776]

My son Aaron had these behaviors refused treatment committed suicide July 28,2022. He was 31 years old. I am having a hard time with it.

[@kehindejohnson6286]

So sorry to hear this Carolyn. I hope you are doing okay and the days become easier to cope with.

[@ej62133]

👍

[@bluemessengerangel159]

Oh wow, I have just been diagnosed with EDS and may have Chiari. I have 4 children and my one son is going through so many of these while I am so unwell. My other older daughter has ADHD. Two of my daughters are showing symptoms similar to mine at their age. They're going see the Genetecist soon.. the one who diagnosed me. How would I approach this theory about my son to him?

[@abdulraheem20102]

Truth - Serum Dr. Ned Hallowell talked about it in his website and podcast , look it up. Recommend learning Breakthrought program and zing performance program

[@dana102083]

The rccx theory on wikipedia and they have a fb page. Im a zebra too in a similar boat ✌💪🙏

[@abigailjohnson6220]

Has HBOT been introduced in studies and if so, what are the results?