Chiari Online Support Group

I'm a fellow Chiarian and need some Chiari love! :-(

WARNING: The following is a long-winded pity party. Read at your own risk.

Hey fellow Chiarians! This is a hard subject for me to talk (well, type) about so please bear with me if I start talking (typing) in circles or my spelling starts going haywire.

Depression (as well as headaches...horrible. horrible. headaches) is nothing new to me. I've battled with it off and on since high school. I'm 32 now. My dad died one year after I graduated high school so of course, and understandably, my depression skyrocketed. I got pregnant out of wedlock in October 2001 and my daughter was born in July 2002. One would think my depression would have skyrocketed with a vengeance due to the added stress of being a single mom, working full time, going to nursing school, etc etc. However, it had the opposite effect. I felt great! I must not have had time to be depressed; well, no time to think and dwell on it seems more like it.

And here's where Chiari makes his grand appearance. Yay. Can't you feel the excitement in my words...

I was diagnosed with Chiari Malformation, type 2 in April 2010 after the left side of my body went completely numb. I fell due to the numbness and broke my left foot. Since I'm a nurse, the doctor I worked directly with got me straight in with a wonderful neurologist. The MRI showed type 2 Chiari Malformation (and chronic maxillary sinus disease). After a lengthy internal struggle within myself, weighing pros and cons, symptoms I can live with vs. symptoms I cannot, I made my decision. And within 2 weeks it was the big day. I honestly thought, after my surgery and after my recuperation, I was going to be a bigger and better version of myself - I was finally going to be pain-free and have my energy back. I mean heck, I had FINALLY found the reason for my smorgasbord of symptoms I had dealt with for so long and FINALLY put a name on it! I just wish the honeymoon had lasted.

Y'all, since my surgery I have had debilitating depression, continued headaches, weight gain, forgetfulness, nausea, etc...There are days when I can't even get out of bed. It's like a never-ending nightmare! I get even more depressed because of the depression....if that even makes sense. Please tell me I'm not alone. Has anyone else gone through this? I feel so bad for putting my family though this. I try to put a brave face on and put my big-girl panties on to try to get through the day, but faking it only gets me so far. Can anyone help me? Or am I a lost cause? Anyone going through this or something similar, or just advice in general, your help and comforting words would be greatly appreciated! Thanks in advance! I cannot continue like this.

~Chiarian in Carolina~

I agree with all of the other posts. I just am so tired myself and not as eloquent! Lol

But, I do care. And want you to know you are not alone!!

PS: not to be a downer but I googled Dr.Paolo Bolognese. Please be aware he was suspended for abandoning a patient. I am sure he has done some good but he has a cloud over him if you read up on it.

http://www.nydailynews.com/new-york/brain-surgeons-thomas-milhorat-...

Praying for you all!

Dear Nunya,

I'm sending you big hugs from Texas! I understand where you're coming from. I too have suffered from depression for years and was actually feeling quite well until my CM symptoms kicked in full force. I have decompression on Monday and am doing my best to be positive, but also prepare myself for the possibility that all of my symptoms may not disappear. That I must allow myself time. You sound like you've been such a strong person! It's OK to vent and reach out for help. I hope and pray that you find the answers you need soon.

I know how you feel this surgery has been a helpful move but has not been the complete recovery I was looking for.I have been diagnosed with dysautonomia so far and now I suffering of this condition it is causing depression,headaches,shortness of breath,dizziness,just to mention a few.It is important that you research the other things that can be common in chiari patients.

WOW! A big THANK YOU to each and every one of y'all for the warm fuzzy feelings! It really does help to know that there are people out *there* who know exactly what you're going through and actually care about how you feel. I know it sounds cliche, but I got teary-eyed reading yalls responses. It's not just words on a screen, I can tell that y'all generally care. Thank you. Thank you. Thank you. Thank you. Thank you.

~Crystal~

Thank you for the kind words! I will definitely be thinking about you on Monday and I will keep my fingers crossed that your decompression surgery WILL COMPLETELY ANNIHILATE YOUR PAIN AND SYMPTOMS! Stay positive and don't hesitate to contact me anytime if you need anything or just wanna talk about anything. I promise I'm not a Debbie Downer all the time! LOL! :)))

AussiePupOwner said:

Dear Nunya,

I'm sending you big hugs from Texas! I understand where you're coming from. I too have suffered from depression for years and was actually feeling quite well until my CM symptoms kicked in full force. I have decompression on Monday and am doing my best to be positive, but also prepare myself for the possibility that all of my symptoms may not disappear. That I must allow myself time. You sound like you've been such a strong person! It's OK to vent and reach out for help. I hope and pray that you find the answers you need soon.

AWE man, I hate to hear you were diagnosed with something else ON TOP of the Chiari crap! Sending well wishes and positive vibes your way! XOXO, Crystal

Lynn Messer said:

I know how you feel this surgery has been a helpful move but has not been the complete recovery I was looking for.I have been diagnosed with dysautonomia so far and now I suffering of this condition it is causing depression,headaches,shortness of breath,dizziness,just to mention a few.It is important that you research the other things that can be common in chiari patients.

I know how you feel. I know this post is from a while ago but I’m new to this forum & thankfully found it cuz I was feeling quite alone in my illness & depressed. When I’m really struggling with my symptoms I get really depressed thinking “God can I really go on like this” & I end up with extreme fatigue & in bed. My family struggles cuz they don’t really understand what I’m going through. I tell them but I think they don’t believe me. I know what you mean when you say you get more depressed because of the depression cuz I am the same way. You just want to feel better but you don’t & you can’t. I work ft & push through cuz I don’t want to feel defeated but working ft is becoming a struggle & its making my symptoms worse. I’m hoping your feeling better & my thoughts & prayers are going out to you :pray: :heart: