Carries Chiari Connection

I am curious to hear how others are getting along with their neurosurgeons.  I don't get to have mine close by....he is in cincinnati and I'm between Columbus and Dayton..so I have to rely on my PCP.  I know it's not his job to understand and know everything about Chiari but it would help if he did.  I am so frustrated with all my symptoms and wish that someone could help me.  I am experiencing all the symptoms PLUS they are worse than before I had my chiari surgery!  But the problem is that my neuro thinks that I am depressed and that is the cause of my symptoms but the symptoms are the exact same ones that HE said were Classic chiari and that he thought the surgery would help.  So how do I convince a very professional neuro that he is not hearing me????  How do I make him realize that yes he did great on the surgery but...that doesn't mean that it fixed me.  I am worse off now..and it's not his fault but I think he thinks I am saying something bad about his medical capabilities when I complain that I am not better.  I can't help it, it is what it is...and today...like right now..I am having vision problems in my right eye (a eye doc says its DRY eye...lol), and I am having heart irregularities...fast, slow, skipping and pounding and at times it feels like it stops..and I have to catch my breathe.  Also, My sugar keeps crashing....3 days in a row.  I am trying to eat right and do everything I can to make myself better but it doesn't matter what I do.  I do have an appt with my neuro in April (maybe the 9th???) but I am so worried about the appt because I think he will say the same thing..."the surgery was a success and your depressed...and thats whats wrong"  I would bet my life on it that he is wrong and that I know for sure it is a medical problem as to why I am symptomatic again.  I just want my life back...is that too much to ask for?? This is not me...I am normally happy, and very positive and always proactive! Why can't anyone see that anymore??? I need help and I am willing to take whatever tests I have to take just please dont' make me feel stupid or like Im imaging this anymore! I can't handle that on top of all the pain and symptoms!

~Carrie

In need of a hero!

p.s.  also...I am having headaches again but more frequently.  They won't go away.  I've had the same type of headaches (two different kind) for about 3-4 weeks now every single day! I wake up with the headache..I go to bed with it...I dont sleep at night...Im experiencing Insomnia and I am sooooo tired! I can't do anything without having a headache! Plus the pain in my neck is worse and feeling stiff on top of the pain...it's crawling up from my neck up into the back of my head and up around into my right eye mostly.  Also the other kind is like my skull has swelling under it and its pushing outward against my skull bone.  I know it's real....I don't think anyone can make-up or fake this kind of pain...and I know for sure Depression is not causing ALL this!

I suggest you flat out refuse to have any symptoms! That's MY expert opinion! NOTE; I am only an expert smart a@$

Hi, I know this reply is more than 4 months afterewards, but your surgery appears to have failed.  I recommend you seek out Dr. Xiao Di at Cleveland Clinic.  He is an expert in this and identifying if a surgery has failed and if it has correcting it.  Return of symptoms or worsening often than indicate that the surgery has failed.  Additionally, some neurosurgones do not address the aspect of ventral compression.  I am not sure how familiar you are with that, but that means anterior compression from the c2 vertebrae part called the dens or odontoid. 

FYI, this is is very promient in my family so I am familar with this on MRI, and just identified it in my brother as well (he had MRI today as he has ahd headaches, will not get into specifics as he did not give me permission to publically post, but lets just say  that we often joke he is version 2.0 of me). 

I think it's always different with everyone....and i really am in a situation where I need to trust my doctors...even when I don't know.  I am just staying put right now.  I am not trying to seek anymore medical attention at this point and trying hard to focus more on my life and what I can do.

Thanks for becoming a member here...and for speaking up! have a great day!

I have just seen your post and wonder, are you still having these symptoms? And were you ever able to get a suitable doctor who believed your pain? I know how hard all of that is and how hard it is to go through the pain everyday as I go through headaches and neck pain as well, along with numerous other symptoms. And I know exactly what you mean about the doctors not believing your pain or saying it is just depression. I was thought to have fibromyalgia and didn't have one sign of it when I visited a rhuemotologist. Its like no one in the medical field even wants to treat Chiari patients. It's as though we are getting on their nerves. I always think it's because they don't want to admit they don't know what Chiari is and how it works; it's way too hard on their inflated doctor egos if they have to admit they don't know.  I also couldn't help but notice that you had the irregular heartbeats and feel like your heart stops. My heart does the exact same thing, I have never found out what it is. Also, I have the hypoglycemia/sugar crash symptoms. They thought I had diabetes, but that wasn't the case. Ever since I've had the surgery, everything has been worse for me. I know how you feel when you say that you aren't as outgoing or proactive as you used to be. Chiari has changed me as well. I'm sorry you are going through this turmoil and I hope it makes you feel a little better knowing that there's someone else in the world going through exactly the same thing. All the best!

Thank you so much Chantilly! I just hope that we all can find our inner peace....I think I am realizing that Chiari is not the reason for all my symptoms.  I know that a lot has to do with my mental status.  When I am depressed or sad...I feel more symptoms.  When I stay positive, happy, and try to live life to the fullest...I am with less pain and less symptoms.  I am going to continue to do my best with Living! I will NOT allow Chiari to rule my world anymore.  I am doing so much better these days! I believe this is a new life for me.  I only wish that others can feel this inside too! It's truly a new beginning for me! I wish the best for everyone!

I think we need to start a Pledge: I refuse to allow Chiari to rule my world and to be the reason for sadness.  I will look at my life with an open mind and remember that this is MY life and I only have ONE life....it's up to me to make the best of it!

What do ya think?

~Carrie