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.

[none123308]

Selma, thanks for the advice. I will try and relax. I have noticed that I have cycles. Unfortunately, it is getting to the point that I feel that I have some permanent damage. Even when I'm not having major headaches, my leg and arm still feel slightly heavy and a little numb. It is not terrible but I definitely notice the difference. Thank you for listening. I will take your advice and relax. I don't think worrying about it anymore tonight is going to do me much good. I will make updates in the future.

[selmaS]

  U need to find the best way to relax....a good soak in the tub, ...avoiding things that trigger u, loud locations, florescent lights bother many of us too, so try and avoid things like that...lifting....straining.....


  Chiari does cycle, and u may be in a flare, so just try to relax.....and when u do begin to feel better, do not be tempted to do more as it will trigger it to flare all over again.

   "selma"

[none123308]

Thanks for your comments Selma. I will try and stop popping my neck. The pressure is just very annoying. I'm going to make some calls on Monday. I will let you all find out what I learn. In the mean time, is there anything that I can do to stop these headaches. Do you guys no anything that might work to make them go away or reduce them. Thanks.

[selmaS]

  Stop popping ur neck....that is not a good thing with chiari....

U r not nuts, the symptoms r very similar to what many of us deal with....so , what u do need is a dx, request the copies of ur MRI along with the reports...u may be able to send them to a Chiari specialist for a opinion , some do this for free ( with hopes u bcome a patient) others do it for a nominal fee.

  Check out the Drs list we have here and do some research-http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562
The list is not meant as a referral just a means to help u with ur research.

"selma"

[none123308]

Thank you both for your comments. I don't know if my insurance will cover me to see a specialist. I think they might if I got a proper diagnosis. Unfortunately, on my report it says that it is "normal." I work for the state but the insurance has specific doctors that they will let you go to. I will call my insurance company on Monday. I need to find another primary doctor anyway. I was wondering if you guys have similar symptoms as I do. For example, I have headaches that hurt in the front of my head. I pop my neck a lot because I feel pressure in the back of my neck. Unfortunately, that seems to make it worse but relieving that pressure for a few seconds is worth it. I get bad pain behind my left eye. Sometimes, I don't get pain behind my left eye but I do get pressure behind my eyes. This pressure is usually accompanied by being lightheaded and feeling off balance. When this happens, my cognitive function is reduced. I sometimes slur my words, have word finding issues, stutter. I notice that when my head hurts, I have more weakness in my left hand and foot. I have sleep apnea also. I have both types. From what I hear, central apnea is not very common. If you guys have similar things going on please comment. I just want to know I'm not going nuts.

Thank you

[pamk5]

I absolutely agree with Selma.  Having a specialist is the most important thing you can do.  Any neurosurgeon can do CM surgery but the risk of complications is reduced if you see a CM specialist.  You will also have your symptoms validated and they wont think you are crazy.  There is a list here in the forum of docs other members have used and liked.  I hope this helps.

Pam