Hi, I'm a 26 years old, female. I'm currently doing a postgraduate degree. I got striked with severe headache earlier last year, which I went to consult the doctors at the student clinic. I did not have any history of having headaches before this. I was told that my symptoms were related to tension headache and they then prescribed me with normal pain-killers. On few occasions that my headache was so bad that I almost wanted to throw up and could hardly breath, which I was sent to ER for it. The doctors then referred me to counselling as well as physiotheraphy. The physiotherapist went through a 5 to 6-week treatments with me but sadly, he couldn't be of much help and further referred me back to the doctors at student clinic. It was then that the doctors decided that my case should be referred to a neurologist. Upon referral to the neurologist, I was requested to go through the MRI scan, and numerous blood tests. All my blood tests results came back normal except that my MRI results showed that I have low-lying cerebellar tonsils but the neurologist told me that that was insignificant because the cerebellar tonsils was located on the line of the foramen magnum. He also assured me that people with this usually do not have any symptoms and such. He then prescribed me with the strongest pain killer he could think of for me. However, I'm getting more symptoms, such as pain on my frontal bones (which is very much associated with sinus, but I don't have sinus) and jaw, inner ear pain, tinnitus, I sometimes could feel that the place tremors (not earthquake), sore eyes, and recently even worse with constant sore throat, and I suffered from a severe and sharp pain on my left back that caused me to not even move for a bit and could hardly lie on my back - the doctor then told me that it could be stress and dismissed the case with more pain killers and muscle relaxant. Can anyone please advise me what am I suffering from? Is it Chiari Malformation that I'm suffering? The doctors that I've been consulting have been telling me that my case is just mysterious. Sometimes, it made me feel as though I'm sickling and perhaps, there's some mental disorder for "imagining" that many problems. Can anyone be so kind to enlighten me please? Thank you!
Hi and welcome, Low-lying cerebellar tonsils measure less than the generally accepted 5mm herniation required for CM DX, some Neurosurgeons & Radiologists call this Chiari type 0 and believe it can be just as problematic as CM type 1
Unfortunately CM is not well understood or recognized as a problem by most doctors, as many patients require surgical intervention a Neurosurgeon (NS) is the best Dr to advise you
I would suggest that you find a NS who has experience of treating CM, you should have a full spinal MRI & a CINE MRI (Flow Study) to check for CSF obstruction and other related problems such as Syringomyelia (a Syrinx) or Tethered Cord.
Hello and welcome! Like Rod said most doctors dont understand CM and alot will tell you that CM cant cause symptoms. Which we all know isnt true. There are some lucky ones who are asymptomatic. One of the most important things for you to know is that the size of the herniation is not important it is whether there is crowding or blockage of csf flow. The tests that Rod mentioned above will tell you whether there is blockage or if there is a syrinx. I see you are in New Zealand I am not sure if we have any access to a list of specialist there. You should search and see. Possibly start a new post if there are any members in New Zealand who may be about to make a specialist recommendation for you. A neurosurgeon who specializes is who you will need to see if there is anyway possible.
You seem so familiar as my story in so many ways; It really brings back some of the challenges that I went through. It was the mri that told everything and now the experts / docs just sit on the "sidelines" as they call it. Observing, and watching me as I go from chiari taking one part of my life away at a time it seems.
I had my yearly mri about a month ago, it said that there really we not a lot of change from the one last year. I told my nueroligst that is great, a no nonsensce guy that I was tired of chiari taking things away, currently it is my depth perception is getting worse all the time
while driving on the interstate. He told me that he is not an expert with the reading of the mri; he looks at it differently and reads the brain differently than a surgeon does.
He feels that I could be a good canidate in his eyes for perhaps surgery; so he set me up an appt. on the 29th of this month to see the head of surgery for the med center where I have been treated for the last now going on 6 years. WE will have to see what he feels like
needs to be done.
In the past the three different surgeons have felt that all the risks do not warrant benefits of the surgery. I tell them lets trade places and bodies and live in my body for a month and then they can tell me what they think. They look at me like I am a crazy guy. LOL
I tell them to listen to what I have and am currently dealing with. They refer me back to the MRI and base things off what it shows them. I respect them for the seriousness of the surgery and the possible results; or lack of results of a surgery.
In so many ways; we have so many of the same things happing so far that we could be "TWINS" I wish you well.
Hello and welcome--The symptoms do sound all too familiar and you've found a great support group here. It's important to find a neurosurgeon who specializes in Chiari to really get a clear picture about what is going on. We are here to answer your questions andhelp you work through this process--which can certainly be daunting. Yes, there are lots of people with low-lying cerebellar tonsils and they have no real symptoms from it--you are in a place now with people who do have that finding and symptoms from it...and we are here to help!!
Thanks everyone for your advices! In a way, you all gave me the moral support that I needed to know that I'm not alone with all these crazy symptoms. I just had another episode of severe headache and dizziness yesterday. I was sent to the ER and I was again dismissed with stronger pain killer. I gave a copy of the MRI results to the ER doctor and she just told me that it's all normal disregarding the note on low-lying cerebellar tonsils, and just asked if I've been under stress. Sigh... I really hope that there will be a miracle for me to just take away the pain and the misery.
Many of the members gave u great info and advice....and I will add the ER is not the place to get nething but more pain pills, they do not dx, only treat for what u come in for and will refer u to ur PCP.....
Do use our list of drs to research to find the right dr for u...but u need a true chiari specialist if u have a chiari malformation and especially if urs falls under the guise of chiari 0.
I too was treated for stress in the beginning.... hang in there : )
I was diagnosed with Chiari Malformation years ago. I am now 65. In 2006 my MRI report stated that low-lying cerebellar tonsils extended 10 mm below foramen magnum with crowding of brainstem. Since symptoms have gotten worse, I had MRI last week. 8/2013. This time, Radiologist's report states 5 mm below foramen magnum with no crowding. I picked up report tonight and will call Advanced Radiology in the a.m. Does anyone know if cerebellar tonsils can retract on their own? I will see my family doctor on the 22nd and question discrepancy since his office reported "normal MRI" based on latter report. When latest MRI was taken, technician repeated it twice and said that I moved. I told her I had not. I will ask Radiologist tomorrow if film could be flawed.
Yes, it is possible for the cerebral tonsils to shrink on their own but that typically happens with acquired Chiari and not congenital Chiari....do u know which u have?
Another possible explanation could be the slice of MRI taken the first time was different from the most recent MRI. If the same view is not done it can make the tonsils appear to grow or shrink when in fact there is no change at all....imagine a pear upside down, if cut into 3rds....u have 2 sections of relatively the same size....the 2 outer sides....but the center will appear longer....so if ur first image was that of the center it seems u have a long herniation and then the 2nd view is of either side, and that could appear to have shrunk....so unless u know the same radiologist did the both studies under the same conditions...strength of tesla and same slices taken then there is no change....except in how the MRI was done....I hope this makes sense.
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