chiari worries

[daniisok]

I have been diagnosed with chiari malformation 1.  For the last year and a half I've been seeing pain may Dr and have had numerous injections and 2 era's in cervical spine.  Extremely painful and not much help at all.  My symptoms started with an itchy patch on shoulder that was soon burning.  It went up my neck and on the right side of my head.  Extremely painful headaches like someone pushing the top of my head down onto my spine.  Memory loss, dizziness, and occasional numbness in my right hand and my feet are always cold. I can not get comfortable to sleep. Herniation is 7mm.  I had to quit working because I couldn't remember what I was doing and I worked around dangerous chemicals. There really is no quality of life. My healthcare is the VA and I am really scared.  I'm on welfare now and trying to raise my granddaughter.  On top of everything I am worried I will lose my home. Savings is almost gone.  Sorry everyone.  I just had to get it off my chest.  I am the strong one of the family so I can't voice my worries to my family.  They depend on me to be solid all the time.  I'm really scared I will lose everything I have worked so hard for.  Thanks for all the information.

[baccalynnwv]

Daniisok

Good luck getting everything arranged. You REALLY need to see someone who actually -actively - treats Chiari on a regular basis. Unfortunately your experience is extremely common in the Chiari world.

I look forward to seeing some updates from you. :)

[Elisaandbucky]

AHHHH! Nothing to do with the brain?! All these symptoms of yours are listed as symptoms in the medical literature about Chiari. I do know that there are other issues that often accompany Chiari. Those need to be ruled out by a surgeon, but I am not knowledgeable about those. Selma know a lot about these other associated conditions. What your neurologist said, "Chiari is nothing to worry about" indicates that she does not know about it. So many neurologists who don't know about it (because they do not keep current in the ongoing research done in their field), do not want to admit it, and sometimes even "laugh" it off. The first surgeon I was referred to by my neurologist certainly did ( and I was his last patient on a Friday, and he was definitely trying very hard to get me out of his office). Consult the list of surgeon on this forum to check for Dr. Baird's concentrations.

Please take heart and know you are supported in this community. No one should leave a doctor's office disheartened. The right thing for her to have done is to admit that her knowledge of Chiari was limited and find another doctor to refer you to. I am sorry to hear your frustration. You are not at all alone. Come back to update everyone on your progress.

[daniisok]

Well I did see Neurologist at  VA.  Ringing in ears, nothing to do with brain, blurry vision, nothing to do with brain, horrible pressure headaches...May be occipital nerves.  She shot down every symptom I've been having with something else.  I really felt she just wanted me out of her office.  She wants me to try Topamax for headache but in h err experience, Chiari is nothing to worry about.  I was speechless and really disheartened.  Maybe I am crazy???  I found Dr. BAIRD IN Tulsa who has experience with Chiari.  I officially asked the VA if I could be referred to him.  He's a civilian so I hope they can get it arranged.

[Elisaandbucky]

Hi. I am reading your post and Selma's reply and would like to echo her. With your difficult situation, it is helpful to be able to talk about your frustrations. Please know that supporting you is a primary concern here on this forum. Please keep us up to date with your progress and your everyday care of your granddaughter. You have a considerable amount on your plate. Let us help. You are in my prayers.

[selmaS]

  Hi and welcome to the Chiari forum.

Never apologize for venting, that is what this forum is for...and you will find you are not alone in your fears and concerns....and we understand what you are going thru

Look into the Clinical trials, that may be more helpful then the path you are on now.....we do have threads with links so use the search this community feature to locate those.....if you need help navigating to those let me know.


Take time to educate yourself on Chiari and ALL related conditions....and then research Drs....this way you will know those at NIH are some of the best and you can rest assured that the Drs involved with the clinical trials for Chiari are also true Chiari specialists.