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.
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.
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.
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.
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.
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???
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.
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.
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.
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.
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