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size of cerebellar tonsil

For those of you who have chiari symptoms, or who have had surgery for decompression, what was the size of the cerebellar tonsil?  Mine was about 4mm when first discovered nearly 5 years ago.  Last year, the symptoms worsened drastically, and have continued to do so.  Last spring, the tonsil was 6mm.  I know that the malformation can grow due to a number of factors.  Today I saw my doctor, and he does not think my cerebellar tonsil is large enough to cause a syrinx on my spine, which I believe might explain the leg pain and muscle wasting.  I am just interested in the experience of others of you who have had these problems and/or surgery.

reelman
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1672601 tn?1305268368
I am a Registered Nurse. My name is Lisa. Recently dianosed with  CM 7mm . As I have read over many sites and also on this forum. It is not the size of the tonsil herniation, but the size combined with the individual that makes the difference. There are people with 3mm herniations who cannot get out of bed, diversely, there are people with 10 mm herniations with absolutely NO symptoms. We were not all created exactly the same, otherwise this would be a very boring world.

It sounds as if you are in the void of what I like to call doctorus undereducatemus. You need to find a doctor that has vast knowledge of CM and contact their office and see what kind of testing they require before you come for a consultation. Like many people on here, you will more than likely have to travel, since these Specialists are not abundant. There is a list of CM doctors on this forum, recommended by members, but YOU will have to do the homework to see who is close to you, what insurances they accept and if they see adults versus pediatrics. Not every NL or NS knows enough about CM to help you. Someone on here, I believe selma, said "most of them are too busy looking for horses, when they have a zebra in the room." Good luck on your quest. Mine is just beginning also. Welcome to the forum.

Lisa
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999891 tn?1407276076
A Syrinx develops when CSF (Cerebrospinal fluid) enters the center of the spinal cord, with CM a Syrinx develops due to an obstruction of the flow of CSF caused by tonsil herniation however the causes of a Syrinx formation are still not well understood, it is not so much the depth of the herniation but overcrowding of the cerebellum. Radiologists use 5mm herniation as a criteria for diagnostic purposes but some are now looking at the volume as well as the depth of herniation as the cause of symptomatic CM.
        
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1672601 tn?1305268368
Agree with all above. The problem I have run into is because so few doctors in the Tulsa area know much about this. I cannot even get one to DO an MRI to the rest of my spine to check for syrinx or SM. I am attempting to get an appt. with a physician 4 hours away, just to get someone who  KNOWS what they are talking about. The physician list shane most recently posted is on the main forum page.  I met a lady in Tulsa a few days ago that had surgery due to CM. She too was at 6mm without syrinx or SM. After the neurosurgeon was done, he told her family, "everything was so tight in there, I do not know how she could even funcion." I am not trying to scare you. I just think the number is only relative to the person and THEIR personal anatomy.

Lisa
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620923 tn?1452915648
COMMUNITY LEADER

  Hi, the biggest problem we face once dx'd is that too many drs r judging us or our chiari by old very outdated info they acquired while in med school......

They say to even be considered chiari the herniation must be 5mm below the foreman magnum....but, chiari malformation is the malformation of the cerebral area of the skull.This causes the area to be too small and forces the tonsils down and out onto the brain stem.

Now depending on what all is going on in the area the tonsils are displaced in will depend on if will have a CSF obstruction.The tonsils can be as long as 13 mm but be long and thin, and will cause no CSF obstruction......but, u can have a herniation of only 4mm that is short and wide that plugs up the opening causing all types of problems.

So if ur dr is looking only at the size of the herniation and not if u have a CSF obstruction, then u have the wrong dr in MHO and I would get another opinion.

I always use analogies to explain this is what I said above is not clear....so let me know, but Lisa explains it quite well too. The odontoid position can cause over crowding, with a herniation of even 2mm could cause obstruction....not too many drs even mention this.

"selma"

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1664208 tn?1332782950
Mine was only a 1cm it was causing LOTS of issues with me thats why i had a decompression.
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1667208 tn?1333107849
First MRI said 6mm, Second MRI said 8mm, I think it can vary because of where the MRI slices are!  
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Avatar universal
You are exactly correct. My herrniation is at 18mm and they are just now considering surgery, there are way too many other factors that have to come into play. And in reality, who really wants to go through surgery anyways???
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1891806 tn?1391119037
Reelman....my herniation is only 6 mm and my syrinx is only 3 mm, BUT, my symptoms are so bad that I am scheduled for surgery July 21st. My CINE MRI also showed decent CSF flow but my Neurosurgeon said  a CINE MRI is not definitive..it's just another tool to help with a diagnosis. All of our symptoms put together makes the Chiari diagnosis.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

  Surgery is not considered just bcuz of length of the herniation, it is more if the herniation is causing a CSF obstruction.....u will also want to rule out ALL related conditions bcuz they can have an effect on the surgical outcome.

As for who really wants surgery, I am thinking no one, but when it comes to dealing with some of the extreme symptoms and what it can potentially lead to, we choose surgery to help prevent those symptoms from getting worse. So once we know surgery can help slow progression of symptoms and possibly help us feel better we move forward only once we locate the right Dr.

I had surgery 5 yrs ago this past May and I have no regrets and I find I am better each yr that passes.
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Avatar universal
I am having severe issues at 6mm below. My neurologist hasn't come to the conclusion of chiari malformation. I suffer from headaches, handweakness, aphasia, muscle fatigue, and other symptoms. I need to know if someone else had chiari malformation with 6mm low lying cerebellar tonsils.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I had one tonsil at 6mm and the other at 4mm..and I did have surgery.....it is not the length of herniation but the symptoms you have that need to be looked at as well as ALL related conditions.....

A CINE MRI will help determine if there is a CSF obstruction....a full spine MRI to check for a syrinx or disk issues.tethered cord...etc....

There is even a type of Chiari with minimal to zero herniation ....the bigger issue is not if you have Chiari or having symptoms but if you are seeing the right Dr.....let us know what area you are from.....we have lists of Drs for different  areas and it is not meant to be a referral nor is it an endorsement of those listed but it is a tool to help you start researching Drs...it gives you a starting place...of Drs that have treated Chiari b4.

Just know you are not alone.
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8 Comments
I know you posted this quite a while ago..  But i have some questions to ask you. I have been having some symptoms for about 5 years. My neurologist said that  my symptoms were unrelated to my CM (type1 9mm) he told me that i was having  tension headaches from stress of course I believed.
I was wondering if any of these symptoms were associated with chiari. Lately the headaches are so bad, my entire head radiating down the back of my neck and out to my shoulders. My vision is affected, I see double have a floater in my right eye and blurry vision. numbness in hands feet, ringing in the ears..A cough that always seems to come back. I can’t focus my eyes or give eye contact like I used to Bc my eyes are so sensitive and it hurts behind my eyeballs. The worst pain is the back of my head when it starts. I can actually palpate down my cervical spine and put my finger on the vertebrae that causes me pain. I have been taking Tylenol so much but it never helps. It’s like a deep throbbing pounding headache all over when I sneeze or cough or blow my nose or even bend down to pick something up. I cannot go to sleep at night.   Of course not all at once, but these things are getting worse and more frequent. Did your symptoms drastically improve after surgery? How long were you recovering? Sorry so much at once
Personally, my symptoms improved immediately after surgery. I still have symptoms from time to time, and looking up seems to make them come on. But the surgery was definitely worth it. Recovery time was 6 weeks.
I’m glad you had a quick recovery! Did any of those symptoms sound familiar to you?
Nearly all of the symptoms you describe happened to me.  My worst symptoms began with sneezing, which would cause a numbness that would radiate down both arms (driving was a nightmare).  Then if I coughed or choked, I would get a sharp pain behind one eye that lasted a few seconds, but the next day a migraine was sure to come.  I could not bend over, because I would lost my balance.  Eventually, I began to be unable to walk straight when I was having a spell.  My ears would get a rushing sound, like throbbing or hearing my heart beat.  I experienced lower back pain when I would have a "spell."  My biggest mistake was riding a series of roller coasters in 2011.  After that, my symptoms grew increasingly worse and I would have vision problems and depression.  Sleep is definitely effected, and concentration became a serious problem ,as did memory problems.  In the midst of all that, my initial neurologist said it couldn't be my Chiari because my herniation was only 4-5mm.  However, after the roller coasters it grew to 6-7mm.  So I finally went to see a different neurologist, who said ALL of my symptoms were related to Chiari.  However, he didn't recommend surgery because there is no guarantee that it will be a permanent fix.  I saw three neurosurgeons, two of which said that I was a great candidate for surgery because, even though my herniation was not very deep, it was wide and was blocking my cerebro-spinal fluid.  So the depth of the herniation is not necessarily the best indicator.  After surgery, I got immediate relief from the symptoms.  Some of the nerve damage that I suffered, especially in my upper body, is permanent, so sooner is better.  And I have problems from time to time, as I mentioned, especially if I look up for more than a couple seconds.  But it is definitely worth it.
This is very scary. I had a blow up this weekend of an unbearable headache with nausea and vomiting and blurred vision with a floater in one eye. Right now I have a very strange nerve pain or electrical shock in my left arm with numbness that hasn’t gone away. My cervical spine is still in pain but now all the way down halfway to my back. How late is too late? Do I need a cine mri is that necessary ? Sorry for the messages I’m just very worried now
I don't mean to sound scary.  I am 49 years old, and didn't discover Chiari until late 30's.  I have always had problems with weakness in my upper arms, so I don't know when is too late.  But I would recommend you have an MRI of both head and spine.  There is possibly a syrinx, which is a fluid filled cyst that can form in the spinal column and definitely cause pain.  It is treatable, but you'll want to get it checked for sure. If your neuro doesn't agree, its time to find one that knows something about Chiari.
Fairchance Pennsylvania I was diagnosed with cmtype 1 because the back of my skull didn't fully develop when I was in my mother my tonsils are at 9mm and I have had a drastic change in symptoms pressure in my head when I cough or anything mornings are the worse dizziness nausea hard to swallow certain things and  my neurosurgeon told me to wait till something happens??
Hi tiffani I did reply to your new thread.....you need to research Drs and find a true Chiari specialist.
Avatar universal
Reelman, who and where did the surgery ???
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1 Comments
I had surgery in Atlanta, GA with Dr. Daniel Barrow at Emory University Hospital.  He is an excellent surgeon!
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