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Does low lying cerebellar tonsils mean Chiari?
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Does low lying cerebellar tonsils mean Chiari?

I had an MRI of my cervical spine recently because of severe and recurring headaches as well as a multitude of other symtoms (symptoms) and it revealed low-lying cerebellar tonsils as well as double disc herniations and impingement upon the right aspect of the spinal cord. My neck doc felt all of this was no big deal and gave me pain meds. Whenever I type in low-lying tonsils online I keep getting Chiari malformation. Is this something I should be looking into further or am I mistaken? My report said nothing of Chiari or any degree of tonsil hermiation. I am just wondering which direction to look in for further help. Thanks.
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620923_tn?1404844667
Hi and welcome to the Chiari forum.

Low lying tonsils can be considered chiari depending on who u r talking to...if u have a true chairi specialist, they would say yes u have chiari....however, there r far more NS and NL that  will say if it is less than 5mm it is not considered chiari.

Since u have an impingement from a disk herniation u may want to see an orthopedist.

Did u have testing to look for chiari related conditions...like a syrinx, tethered cord, PTC...EDS....ect.....

The drs will only watch ur condition unless the tonsil herniation is blocking CSF, or u have an over crowding that is causing a quality of life issue.

I know I threw a lot at u here, but will try to explain them as u continue to ask questions......NL = neurologist...NS = neurosurgeon...PTC= pusedotumor cerebri......EDS= Ehlers-Danlos Syndrome.

I am happy to welcome u into our little family here, sorry u had to seek us out.

"selma"

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My daughter was one of these types of Chiari so most doctors said she did not need surgery.  We went to so many docs....  We ended up meeting Dr. Rosner in North Carolina and he diagnosed her with Chiari then referred us for surgery to the Western Regional Brain and Spine Institute in Las Vegas with Dr. Seiff.  He was fantastic and she had surgery in Oct 09 and is doing really well.

Adrienne
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Hi Selma,

Thank you for the information and explanation of terms. I am not sure if they have checked me for any of the disorders that you named. I was seeing a neurologist briefly but quit when she dismissed my case as depression or stress related because she didnt have an answer (been there before). I am going to start searching for a different doc, maybe a fresh set of eyes will help. I have had so many difficulties with my health since I was a kid and always with no explantion or diagnosis. Maybe Chiari has something to do with all of this. It will surely be on my list of possibilities. Thank you so much for listening, you are all doing a great thing by helping others with these challenges. I will continue researching and asking questions, I know there is an answer out there somewhere.

Shelly
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1041839_tn?1278685446
Hi shelley and welcome to the group! May i ask what other symptoms are you having? Cant really give you any better info than selma cause she's awesome!
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Avatar_f_tn
When I was 10 years old I began having extreme bouts of diarrhea and abdominal pain and it continued for years. At 13 my mom took me to the docs and without testing they said it was puberty issues. At 15 it became worse and was associated with heachaches, fatigue, arm pain, and weight loss. I went through alot of testing with a GI doc but they could find no answers and said I would have to learn to live with it. As I got older into my 20's my symptoms started to slowly subside. Now again over the last 5 years I have been experiencing extreme headaches, arm pain with numbness and tingling, ear aches and occasional ringing in ears, memory trouble, chest pain, shortness of breath, terrible neck pain, pain at the base of my skull, periodic episodes of extreme weight loss, constant low grade fevers, extreme fatigue, and I break out in hives whenever I get too cold. I have been in the ER many times due to chest pain and severe head pain but I am still searching for answers. Sorry for the long-winded answer.
Been dealing with this for quite a while.
Thanks,
Shelly
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1041839_tn?1278685446
Dont worry about long answers! You cant put all of that in a short answer lol i know i get long winded or go off in different directions bc i loose train of thought and most of us have frequent typos lol Ok JMO bc i'm not a dr nor do i pretend to be but you do seem to have a lot of the chiari symptoms. Some of it can also be from the disc problems but to my knowledge not all of it. Like i said just my opinion and dealing with the same things for so long. Also from the great insight and wisdom i have found here. If it was me i would send your MRIs to a true chiari specialist and see what they had to say. -- Shannon
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Thanks for the advice, I could use all that I can get right now. I will look for a Chiari specialist in AZ and go from there, couldnt hurt anyway, right? Thanks again!
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620923_tn?1404844667
Hi Shelly,

Finding a Chiari specialist is the best way to move forward...however they r not as easy to find as they r dew and far in between.

The best known chiari specialist out ur way is Dr Oro in CO......please see the thread here with the list and use that as a means to locate drs to research.

Most of us do find we need to travel to get to a true chairi specialist.And I know what u mean by being dismissed by the drs,  if u haven't read the poem at the top of the forum by Dr Oro....it gives hope to know there r drs out there that do understand.

"selma"
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1041839_tn?1278685446
Dr. Oro is in CO. There may be one closer but i dont think so. We do have a thread here of drs members have used and liked but you must do research and find the right dr for you! --Shannon
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ok, thanks. If I have to travel I will. That was a great poem! It is comforting knowing that there are docs out there that understand. Thanks for the encouragement.
Shelly
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Thanks Shannon, I will check it out and do some research. Thanks for the support!
Shelly
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620923_tn?1404844667
U r welcome Shelly ......I just love that poem and when I feel down I read it....it helps me.

And I traveled to get to the right drs for me and would do it again in a heartbeat.

"selma"
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Avatar_m_tn
where do i find the poem you mentioned?  Thanks in advance.  My daughter is in the process of finding out if she has cerebellar tonsils and is very upset.  She has been told so many reasons for her headaches, vision problems, fatigue and so on.. Maybe this can help us..
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620923_tn?1404844667

  Hi and welcome to the Chiari forum.

  At the top of this forum under the title Chiari, there r boxes of featured articles and  under those there are  drop downs for - About this Community -Important Announcements- Community Settings.

It is the drop down of Important Announcements that the poem is ...here is a direct link

http://www.medhelp.org/posts/Chiari-Malformation/So-I-Say-poem-by-Dr-John-Oro-a-Dr-that-truly-understands/show/1136687

I hope both u and ur DD will continue to come here for support...it helps to know u r not alone in this journey : )
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