Chiari Online Support Group

Anxiety anyone?


I’ve been suffering from really bad anxiety since I got diagnosed and I’m 5 years into my diagnosis and the anxiety has gotten worst. I don’t know but does anyone else feel extremely stressed out and anxious all the time because lately it has been really bad. I don’t know why. Life has been pretty good for the most part aside from dealing with the torture chamber our bodies have turned into. Idk I figured if I was going to be feeling like this it would of been when I first got sick not 5 years later. I don’t want to have to add an anxiety med to my routine… Could I get some advice before I drive my beautiful and supportive girlfriend crazy…HELP


Anxiety is a big issue. 3 years post op and my anxiety is crazy. I take medication for it but a lot of times it does not work. Good luck.


I have had anxiety attacks since a kid. I couldn’t share what I was going through with anyone. I had fear of doctors, hospitals, clinics, dentists, ambulances, Doctor tv shows, so I never told anyone when I was ill. I suffered with sickness and pain and many tooth aches. It turned into phobias of storms, elevators, small spaces, school, etc. I would pass out sometimes from being so scared. I was able to share it with my boyfriend when I was 18, he is my husband now of 36 years. I know what you are going through, you feel like you are going to die. So scary. But you won’t and you just need the tools to get through it. Talk to someone right away, get up and walk, dance, do anything to get your mind off of what you are feeling/thinking. I have never had therapy but consider it if you can’t get better on your own. It runs in my family, so I can always call a sibling who understands me. Good luck.


Yeah depression and anxiety tuns In my family a lot which is why I get scared when I feel like this because I don’t want to end up in therapy and mess to control it. I meditate when I feel super anxious. It always helps

  Chiaris did the strangest things with my emotions!  As my brains were being 'smooshed' over time,  bit-by-bit the ability to feel emotions got smothered.  Except for anxiety and terror!   I remember when my sister got married - I couldn't feel happy.  I was able to ACT happy, and I rembered what it used to FEEL like to be happy, but the feeling of happiness couldn't be conjured up.   When my mother died,  I couldn't feel sad.   I tried so hard to cry, because I knew that's what you do when someone you love dies.  But - even that feeling wouldn't happen.  All I could feel 24/7 was anxiety and terror.   It's like the anxiety button was being pushed and someone wouldn't let go!  Not even medication could stop it.   
    Since Chiari decompression surgery - ALL my emotions have come back ever so gradually.  Some have come back with a vengeance!   When something happy happens,  I nearly pop out of my skin with joy - and folks area always making fun of me.   But, it is so FUN to feel happiness again - after happiness was smothered for years!    I hope and pray you find that happiness again.


Hi im a newbie to this sight but im not a newbie to CM.I am about 5 months post decompression and my neurosurgeon said I should be feeling better by now.I had a good laugh.I feel sort of better meaning im not dealing with all the symptoms from meningitis,csf leaks and infection.But I just do not feel 100% or myself.I had noted to the surgeon that I felt a lack of motivation and constant fatigue.I put so much pressure on myself to be normal.But what helped me is seeing what I went through as “trauma” and that it does take a lot of time to heal.I have really bad anxiety and I still do especially when there is high levels of stress in my household.And I use to be anxious that another attack would come on if I laughed or if an attack would happen in public.My attacks got so bad I would not leave my house for long periods of time.I have tried cognitive behavioural therapy that really helped me obviously everyone is different.I don’t like medication to after being on like 13 pills a day for a year before my op I had a party when I didn’t need to take them anymore.Hope things get easier.



I feel there is cause for anxiety. But, I have not experienced it much, myself. However, I am four years post surgery & just beginning to feel really healthy. My surgery & recovery was text book , as went REALLY well, but I recognize that I have been unwell, well, probably most of my life…Just a little below the radar. Those times mum reports as a kid I used to beg to go to bed in the day. Those times I was teased at school for what a doctor would diagnose as a sense seizures. The pain!!! The trouble with what most people take for granted (just realizing some of it now). It is enough to make me anxious. But, the flip side is I am so grateful for the diagnosis & treatment.
I too, hope & pray you are very well soon!



Hi shaylee_roldon I completely understand. I suffered bad mental health issues from 16 but when I was diagnosed with chiari malformation syringomyelia September just gone my anxiety has been really night ever since… I get really low in mood and my anxiety gets to a point where it’s unbearable. Your not alone best wishes x


I’ve dealt with bad anxiety my entire life. Generalized anxiety, panic attacks and even a full blown phobia. I’m still pretty tortured by anxiety. I recently came off of an anxiety medication I had been taking since I was 11 years old. I recommend staying far far away from any benzodiazepines. They are highly addictive and I didn’t even know until I was taking way more than I should have been. That was one of the worst experiences of my life, and I urge you to learn how to manage your anxiety on your own before you add in any medications. I’m learning how to manage my anxiety on my own for the first time in my life now. It’s hard, but I so wish I had done this years ago.


I see you wrote this post in Feb?
How you doing now
My son has chiara and gets extreme panic attacks


I appreciated your posting. Your experiences are similar to mine. Several types of stimuli really get to me. The part of Michigan I live in is a metropolis. Lots of traffic, roads turn into parking lots. Even though I don’t work, we are still raising one child. So, I can’t always drive when I want to and after school events have me driving in it all the time.
I am 4 years post op, and I am starting to have relationship problems with my neurosurgeon.

I still am supposed to go see him because I have syringomyelia too. As you know, the visits are on going because of the condition. I am finding him to trivialize my condition, and avidly offer surgery after surgeries as the only cure for anything.
Regarding what you were saying about the surgery being tramatic, it surely is. I have had 2 children and a hysterectomy and nothing could have prepared me for that surgery. I read about people on here enduring 2 and 3 of those surgeries when I think I am suffering from PTSD from the first one (not kidding). The issue I have is, we are supposed to keep seeing our neurosurgeon…why? If the surgery wasn’t successful, they can’t make condition go away and only answer is more surgery that might not help again anyways.
I might look into the cognitive behavioral therapy. At this point I will try anything. Again, I appreciate your posting. Life starts to feel like an island, and it helps to know others are going through same experiences. Take care.:maple_leaf::fallen_leaf:


I found vision therapy helped with driving quite a bit. Also changed driving habits. I still do not drive much as is still a challenge if I do it daily.


Thank you everyone. I’ve opened up to those close to me about my depression and anxiety and it helped. Having a strong support group is life saving. I’ve been hiking a lot and meditating even more. Just looking for outlets to keep my head clear. I’ve picked up writing as well whih is very therapeutic


Hey Shaylee,
That’s great, you’ve reached out and found the support you need. Well done you. Having a rare condition can be extremely isolating and finding others who can understand it all can be beyond difficult. Some people can be great at showing sympathy but I have found that ‘Ohh you poor thing’ mentality gets real old, real quick. Having people who actually know the realities of it all and can actually show empathy can be a rare thing and that is what the Ben’s Friends Network is all about. Hiking and meditation are two great ways to help keep our minds clear and ourselves healthy. If you’re feeling healthy, that’s half the battle. If it’s all working for you then you keep doing it I say.

Merl from the Moderator Support Team