Aa
borderline cerebellar tonsillar ectopia
Hi,
I've been experiencing dizziness, like vertigo, for about 2 years. It puts me flat out for hours and sometimes days at a time. I've been checked by an ear nose and throat doctor. Nothing wrong with my inner ears. I've seen a neurologist who told me that the weakness on my left side is unexplainable and after a MRI of my cervical spine they called and didn't tell me what the results were, only that there's no explanation for the weakness or dizziness.
I asked my primary doc what the results read and he told me 2 disc herniations and the cerebellar ectopia. If the cerebellum controls balance, could the dizziness be a result? Does this get worse? this has disrupted my life, working is difficult as is driving. Every day is a toss up. I'm tired of getting pushed aside like it's in my head. It's not. I'd appreciate a new opinion.
Thanks
I've been experiencing dizziness, like vertigo, for about 2 years. It puts me flat out for hours and sometimes days at a time. I've been checked by an ear nose and throat doctor. Nothing wrong with my inner ears. I've seen a neurologist who told me that the weakness on my left side is unexplainable and after a MRI of my cervical spine they called and didn't tell me what the results were, only that there's no explanation for the weakness or dizziness.
I asked my primary doc what the results read and he told me 2 disc herniations and the cerebellar ectopia. If the cerebellum controls balance, could the dizziness be a result? Does this get worse? this has disrupted my life, working is difficult as is driving. Every day is a toss up. I'm tired of getting pushed aside like it's in my head. It's not. I'd appreciate a new opinion.
Thanks
Hi
Leslie and Selma really know their stuff. I would like to speak from the personal respect of having cerebellar tonsillar ectopia. I have had low frequency periodic headaches all my life. The neurologist told me that there are 3% of the population that do in addition to migraines in addition to migraines and fibromyaglia. I have a headache at all times. After an evaluation for headaches and disc pain, a NS told me that I had CTE. While having been seen by over 8 neurologists and a pack of specialists, everyone else missed it. I had a CINE MRI thorough history and then he discussed my options. Initial surgery seemed to start helping in that I had my first night of deep sleep in loads of years.The headache was still there. Then severe headaches and an infection, surgery again. Currently in a slow painful recovery.
My point is that CTE leads to the same symptoms as Chiari and they are serious and destroy the quality of life. Get the right specialist. Be prepared for your appointments. Don't be afraid to ask questions. You do not realize how much you have to know as a patient before you get there. Read as much of this site as Selma, Lottida and others leave a lot of wisdom. I wish I would have come here before I had my surgery.
Best wishes to you. If you decide to have the surgery, it can take 1 to 2 years to see results.
Leslie and Selma really know their stuff. I would like to speak from the personal respect of having cerebellar tonsillar ectopia. I have had low frequency periodic headaches all my life. The neurologist told me that there are 3% of the population that do in addition to migraines in addition to migraines and fibromyaglia. I have a headache at all times. After an evaluation for headaches and disc pain, a NS told me that I had CTE. While having been seen by over 8 neurologists and a pack of specialists, everyone else missed it. I had a CINE MRI thorough history and then he discussed my options. Initial surgery seemed to start helping in that I had my first night of deep sleep in loads of years.The headache was still there. Then severe headaches and an infection, surgery again. Currently in a slow painful recovery.
My point is that CTE leads to the same symptoms as Chiari and they are serious and destroy the quality of life. Get the right specialist. Be prepared for your appointments. Don't be afraid to ask questions. You do not realize how much you have to know as a patient before you get there. Read as much of this site as Selma, Lottida and others leave a lot of wisdom. I wish I would have come here before I had my surgery.
Best wishes to you. If you decide to have the surgery, it can take 1 to 2 years to see results.
Hello. Lesel22 and Selma give you great information above. One key thing to do - which will prove to be helpful when you do get to see a specialist - is keep a detailed and accurately dated log of your symptoms and the activities that may have aggravated them or even brought them on. Be careful, especially, of straining. Another helpful thing is to request disks of all MRIs that you have done. If you ask at the beginning, sometimes the technician can give it to you when you finish. It's just nice not to have to request it later. Try also to get (and keep) radiology reports.
I really hope you can get some good information here on this forum so that you can feel more knowledgeable and in control. I was dismissed initially by a non-specializing neurologist, and I remember how frustrated I felt. There are members here who can give you valuable information. I am glad you found the forum. You will not be alone anymore and you will feel more encouraged.
I really hope you can get some good information here on this forum so that you can feel more knowledgeable and in control. I was dismissed initially by a non-specializing neurologist, and I remember how frustrated I felt. There are members here who can give you valuable information. I am glad you found the forum. You will not be alone anymore and you will feel more encouraged.
I also agree that you should get an opinion from a true chiari expert, not just a neurosurgeon who claims to specialize in chiari amongst other things.
I just visited the head of neurosurgery at a top hospital in nyc that claims to specialize in chiari and I asked him some questions about chiari that I knew the answer to in order to see if he knew them and he did not. First of all, he looked at my scans and said chiari can't be my problem since the tonsils aren't more than 5 mm (they are 4 mm). I said my symptoms worsen if I have my neck in an extended position for a period of time, and he said he hasn't heard of that. And I asked if chiari could explain my leg and foot pain and tingling, and he said chiari does not cause that, when it can. I have other symptoms too, and he actually said I am much more symptomatic than his chiari patients, that he thinks something else is going on, but I've been tested for everything else.
It's just so frustrating hearing so many different opinions. I've actually had one neurologist say in the same sentence it would be criminal to operate on you, but you really should have a chiari expert look at it. The same doctor said I should stop going to different doctors looking for an answer to my symptoms because you'll just find a different answer, that I have to stop looking.
I have visited a chiari expert and he thinks its coming from the chiari but I would just like to have at least 2 opinions in favor of the chiari before surgery.
Just my opinion not to waste your time with "regular" neurosurgeons or neurologists. Go to a specialist. I've had vertigo/dizziness for 10 months now and other symptoms on top of that for longer and have also been told it's in my head and to take some anti anxiety pills, which I never did because I knew that wasn't it.
I actually had another doctor order vestibular testing (ENG, rotary chair, and audiogram) to PROVE to me that nothing was wrong with me and it was all in my head. Needless to say, I did the testing and it showed sensorineural hearing loss and 50% caloric weakness in my right ear, yet no ENT can explain why (other than the ENT doctor that first found my chiari thinks that is the cause). I tried vestibular rehab, which greatly increased my vertigo, which shouldn't happen if you have a vestibular loss and now just need to compensate. You might feel sick for a half hour after the exercises but you shouldn't get active vertigo.
Anyway, my point is don't waste your time like I did, contact a chiari expert in the beginning.
Does your dizziness/vertigo get worse with activity or exertion? Mine does.
I just visited the head of neurosurgery at a top hospital in nyc that claims to specialize in chiari and I asked him some questions about chiari that I knew the answer to in order to see if he knew them and he did not. First of all, he looked at my scans and said chiari can't be my problem since the tonsils aren't more than 5 mm (they are 4 mm). I said my symptoms worsen if I have my neck in an extended position for a period of time, and he said he hasn't heard of that. And I asked if chiari could explain my leg and foot pain and tingling, and he said chiari does not cause that, when it can. I have other symptoms too, and he actually said I am much more symptomatic than his chiari patients, that he thinks something else is going on, but I've been tested for everything else.
It's just so frustrating hearing so many different opinions. I've actually had one neurologist say in the same sentence it would be criminal to operate on you, but you really should have a chiari expert look at it. The same doctor said I should stop going to different doctors looking for an answer to my symptoms because you'll just find a different answer, that I have to stop looking.
I have visited a chiari expert and he thinks its coming from the chiari but I would just like to have at least 2 opinions in favor of the chiari before surgery.
Just my opinion not to waste your time with "regular" neurosurgeons or neurologists. Go to a specialist. I've had vertigo/dizziness for 10 months now and other symptoms on top of that for longer and have also been told it's in my head and to take some anti anxiety pills, which I never did because I knew that wasn't it.
I actually had another doctor order vestibular testing (ENG, rotary chair, and audiogram) to PROVE to me that nothing was wrong with me and it was all in my head. Needless to say, I did the testing and it showed sensorineural hearing loss and 50% caloric weakness in my right ear, yet no ENT can explain why (other than the ENT doctor that first found my chiari thinks that is the cause). I tried vestibular rehab, which greatly increased my vertigo, which shouldn't happen if you have a vestibular loss and now just need to compensate. You might feel sick for a half hour after the exercises but you shouldn't get active vertigo.
Anyway, my point is don't waste your time like I did, contact a chiari expert in the beginning.
Does your dizziness/vertigo get worse with activity or exertion? Mine does.
COMMUNITY LEADER
Hi and welcome to the Chiari forum
Hi....yes the cerebellum does control balance and is a primary possibility for your symptoms. It is possible for your symptoms to worsen or appear to go away for a time Chiari symptoms cycle...and certain activities we participate in can cause the symptoms to flare....
To say your borderline is not the right terminology JMHO as it does not matter how far the tonsils are herniated....but if you have a CSF obstruction that can cause a syrinx to form.....the other possibility is a related condition to Chiari....
My suggestion would be 1- educate yourself on Chiari and ALL related conditions.....2- research Drs to find one that is well informed and experienced with Chiari.3- know you are not alone <3
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