Incidental Cerebellar tonsillar ectopia?

[none123308]

Hello, can someone please respond to this question. I have posted multiple questions about this topic on other sites and I can't get anyone to respond. I had an MRI because I have headaches, pain behind my left eye. I also have weakness in my left hand and foot. My MRI says I have Incidental Cerebellar ectopia which is the upper limits for normal for an adult. I thought that 5mm or more was considered a malformation? If this is the case, why are they still saying it is normal and incidental if I'm having symptoms. Before I had this test, my doctor said to me he thought that I was bipolar 1. He said that he expected all my tests to come back negative and I needed to talk to a medical psychologist. I told him I have never had mania or nothing like that. It makes me so mad. I also had a small pituitary mass on my MRI also.

I don't ever want to see him again. I called the office to try and get my pituitary mass looked at by an endo. I got my doctors nurse calling me sounding very frustrated wanting to know why I'm going around my doctor. I said I did not want to see him. After that, he is now leaving messages on my phone.I don't know what to do. I just want to get my tests done by someone who will listen to me and not think I'm crazy. No one even told me about the "incidental cerebellar tonsillar ectopia." I found out when I requested my records. I want to be clear, 5mm cerebellar tonsillar ectopia is chiari malformation? If so, what tests should I request? I have to have another MRI for my pituitary mass. So, I would like them to check out the cerebellar tonsillar ectopia at that time also. Thank you so much for your time. If anyone could respond that would be great. I have been so worried and I don't have anyone to give me any advice on this.

[selmaS]

Hi...for those that define chiari by the length of the tonsil herniation u would be classified as Chiari 0....here is a link to Conquer Chiari's article on it.

  http://www.conquerchiari.org/subs%20only/volume%204/issue%204(1)/Chiari%200%204(1).asp

  Hope this is of help,....if u need more, research Chiari 0

       "selma"

[shetawk]

Anyone have a link to studies on length of tonsils as opposed to position in relation to symptoms?

Radiologist said 2-3 mm tonsil and presence of small C7-T1 neurogenic cysts are insignificant but I have plenty of symptoms.

Need official study/statement to show dr.

Thank you.  

[lydelia]

I feel your pain, all of you. I am in the process of figuring out what is going on with me too. Been to see a neurologist, and he basically told me that my Chiari was 'incidental' and that it could not be causing the symptoms I was complaining of (arm and hand numbness and weakness). So now I am going to see a neurosurgeon for a second opinion. Being brushed off *****, but you just have to keep plugging away until you find someone who will listen to you and take you seriously. You are doing the right things.

[*Stormy*]

meatsafe- That was my question way back when they thought it was "all in my head". I was like, even if it is....are you just going to leave me like this and not offer any help?? It's like they want to label you and then just hope that you disappear...

none- I totally remember the things you are going through right now...all I can offer is that once you see a specialist and you start being treated the way you should be (and cared for) you will come to peace with it. I have, but it took two years... I finally now believe in myself, that my symptoms really WERE caused by this "little" herniation and I have accepted that I will have to live with some of these symptoms for the rest of my life. Now, I am just "getting on with it" the best way I can. I wish you all the luck for when you see your specialist :D

Stormy

[none123308]

Zygy2, thank you for your comment. This illness worries me a lot.But at least I know what it is and have a good start finding some answers. I definitely do not want things to get any worse. Hopefully, if I take care of it now I can avoid a lot of problems down the road. Meatsafe, it is nice know that even us "crazy" people are entitled to care. LOL Maybe the doctor thought I was in the mist of mania. I never said I would take over the world with my headaches and numbness. But maybe I gave him that vibe. Anyway, I'm looking forward to talking to someone who takes me seriously.Tomorrow, I'm going to get copies of my MRI and sleep study and hopefully I can get a specialist in Seattle to look them over for me. I will let you guys know what I find out.

[meatsafe]

Sadly, many doctors are of the opinion that an abnormality you've had since birth can't be causing symptoms that recently appeared. This sort of ignorance might explain why your Chiari malformation was labeled "incidental." As others have said, you need to seek out advice from a specialist.

As someone who really is "certifiable," I can only imagine how difficult it is for you to be falsely labeled bipolar by your doctor. Know, thought, that even we crazies receive treatment for our physical symptoms! It's not like manic depressives are known for inventing symptoms like headaches and numbness just to vex their doctors. Don't let him use this suspicion to deny you care for your corporeal complaints.