Aa
vertigo???
Hi there...I have had vertigo for several months now and the doctors cannot explain medically why this is happening to me. An MRI shows that I have Chiari Type 1 with a 9mm herniation. The neurosurgeon says that the vertigo is not related to the Chiari and does not seem to be concerned at all because I don't have "frequent and severe" headaches...The ENT says to go to vestibular rehab (PT) ...all the research that I have done, vertigo---dizziness and balance issues---appear to be the second most complaint for patients with Chiari...has anyone experienced the vertigo without significant headaches and did vestibular rehab help at all??? I'm wondering if I should get a second opinion??
Don't worry about sounding whinny. As misunderstood as this is, we have to be our own advocates. If you feel bad, you feel bad. You have to make sure that you're heard and understood. Remember that the Doctors works for you.
It's important to know that there is no cure for Chiari. The surgery can help with symptoms, but you will always have it. Chairi isn't considered life threatening, but it is life altering.
It's important to know that there is no cure for Chiari. The surgery can help with symptoms, but you will always have it. Chairi isn't considered life threatening, but it is life altering.
Thanks...you all have provided very good information for me. Maybe it is my neck causing these issues?!?!? I was in a MVA a little over a year ago and had whiplash. It only bothered me for a couple of weeks and then suddenly went away. Who knows...I am going to follow up with a second opinion. I hate to sound like I am whining but this is really a miserable experience and it makes it difficult for me to do the normal things that I have always done, like dishes, laundry, sweeping, etc...
Hello to everyone,
My daughter has Chiari and has problems with dizziness. I have had her to 2 chiari specialists. Both agree she could have the surgery but it is not a rush. Her herniation is pretty large but it is very thin and long. It is 1 cm.
Her doctor sent her for what is called vestibular testing. It was an all day event. It involved an extensive PT exam, ears, gait study(really cool) where they hook you up and you look like a stick person and then the motion tests, rotational chair and different things of that nature.
All her tests came back normal. the doctor explained that usually with chiari something will come back abnormal. She does get headaches though. He sent her to a neurologist and from what i gather is a very respected doctor where she had a EEG done. That also came back normal.
He then told us there is a certain kind of migraines that will cause these symptoms. You do not have to have the severe migraine pain but can experience vertigo or dizziness. he put her on a very mild blood pressure medication which is very helpful with these kinds of migraines and it seems that her dizziness is getting slightly better.
She goes back around Sept. for the vestibular testing again. She is actually in a study at Du Pont childrens hospital in Delaware for children with chiari who are having dizziness problems. They are actually conducting a study on this problem. They want to see if there is a big difference in the children who have the surgery and the children who do not. While she is particiapating in the study the people are not allowed to know whether or not she has had the surgery. It is like a blind study to them. We are not allowed to mention it and she has to wear a bandana around her neck so they cannot see if she has a scar or not.
Beacause all her tests came back normal her surgeon is not rushing the surgery because if he does the surgery he wants to know that he will be helping to relieve a symptom and not just doing the surgery because an MRI says it is there.
I think that you will have to look around for a doctor that you feel comforatble with and one that will look at all options before they rush you into any kind of surgery that may or may not help.
I have bouts of vertigo myslef so I know how they feel. I went down already and I have to say that was very scary. I do not have chiari but I do have DDD in my neck and I honestly feel it comes from that. It seems like when I am having problems with my neck my vertigo will act up.
Take care and I hope you find the right doctor and help that you need.
Chadry
My daughter has Chiari and has problems with dizziness. I have had her to 2 chiari specialists. Both agree she could have the surgery but it is not a rush. Her herniation is pretty large but it is very thin and long. It is 1 cm.
Her doctor sent her for what is called vestibular testing. It was an all day event. It involved an extensive PT exam, ears, gait study(really cool) where they hook you up and you look like a stick person and then the motion tests, rotational chair and different things of that nature.
All her tests came back normal. the doctor explained that usually with chiari something will come back abnormal. She does get headaches though. He sent her to a neurologist and from what i gather is a very respected doctor where she had a EEG done. That also came back normal.
He then told us there is a certain kind of migraines that will cause these symptoms. You do not have to have the severe migraine pain but can experience vertigo or dizziness. he put her on a very mild blood pressure medication which is very helpful with these kinds of migraines and it seems that her dizziness is getting slightly better.
She goes back around Sept. for the vestibular testing again. She is actually in a study at Du Pont childrens hospital in Delaware for children with chiari who are having dizziness problems. They are actually conducting a study on this problem. They want to see if there is a big difference in the children who have the surgery and the children who do not. While she is particiapating in the study the people are not allowed to know whether or not she has had the surgery. It is like a blind study to them. We are not allowed to mention it and she has to wear a bandana around her neck so they cannot see if she has a scar or not.
Beacause all her tests came back normal her surgeon is not rushing the surgery because if he does the surgery he wants to know that he will be helping to relieve a symptom and not just doing the surgery because an MRI says it is there.
I think that you will have to look around for a doctor that you feel comforatble with and one that will look at all options before they rush you into any kind of surgery that may or may not help.
I have bouts of vertigo myslef so I know how they feel. I went down already and I have to say that was very scary. I do not have chiari but I do have DDD in my neck and I honestly feel it comes from that. It seems like when I am having problems with my neck my vertigo will act up.
Take care and I hope you find the right doctor and help that you need.
Chadry
I feel comfortable saying that the vertigo IS a symptom of the Chiari!!! The neuro-ENT is "confident" my issue is a "neck" related issue and the neurosurgeon is "confident" that the vertigo is vestibular. The "neck" issue makes sense because my brain is protruding into the spinal cord, which is in my neck!?!?! The neuro-ENT is not seeing me anymore because of his theory of the neck issue and the neurosurgeon thinks I need to be seeing the ENT!!!! I am out of work on FMLA and have no clue who should be following me except for the physical therapists!!!! This is frustrating for me because I just want my quality of life back!
Welcome to the forums, I too am sorry you have to be here, but we are a comforting site and we try to answer as many questions as we can.
As to what everyone has said, I'm blushing, thanks everyone.
In the advice section: I think everyone has pretty much said it all :). Yes, you need to get a second opinion. Most regular Doctors and a depressing number of neurologists and neurosurgeons are unaware of Chiari and its related problems - or barely know of it. You need to find a specialist. We have a thread here with a lot of Specialists or at least Doctors that we are comfortable with. Check it out and see if any is near you. Unfortunately you need to be prepared to travel.
Vertigo is a common symptom of Chiari. With Chiari your cerebellum is being squeezed into your spine because it doesn't fit in the bottom part of your brain - basically, your brain is too big for your skull. The cerebellum is the part of the brain that controls sensory perception, coordination, and motor control. The squeezing can cause damage. Therefore, YES! It can cause vertigo, vision problems, headaches etc. But it doesn't necessarily have to cause headaches or any given symptom.
Not to scare you, but I think it important to understand; You also (as mentioned above) need a CINE study and MRI's of your spine. One of the major related issues with Chiari is a blockage of spinal fluid (CSF) called a Syrinx. This can lead, if unchecked, to paralysis. At 9mm, your herniation is large enough to start a Syrinx.
After my surgery I did vestibular therapy and was actually surprised to see that it does help. I still get dizzy, but the therapy (also called "Fall Prevention") teaches the subconscious mind to catch subtle hints before you fall or lose your balance and I find that the number of actual falls I've taken has substantially decreased since I took it. I still get dizzy, I am just able to control it to a better degree. I walk with a cane and I can "catch myself". Or if its really a bad one, I can sit down on the ground rather than fall down.
A couple of things to avoid though; Chiropractors and Massages. Message therapists might be okay, but only under the order of a Chiari Expert.
As to what everyone has said, I'm blushing, thanks everyone.
In the advice section: I think everyone has pretty much said it all :). Yes, you need to get a second opinion. Most regular Doctors and a depressing number of neurologists and neurosurgeons are unaware of Chiari and its related problems - or barely know of it. You need to find a specialist. We have a thread here with a lot of Specialists or at least Doctors that we are comfortable with. Check it out and see if any is near you. Unfortunately you need to be prepared to travel.
Vertigo is a common symptom of Chiari. With Chiari your cerebellum is being squeezed into your spine because it doesn't fit in the bottom part of your brain - basically, your brain is too big for your skull. The cerebellum is the part of the brain that controls sensory perception, coordination, and motor control. The squeezing can cause damage. Therefore, YES! It can cause vertigo, vision problems, headaches etc. But it doesn't necessarily have to cause headaches or any given symptom.
Not to scare you, but I think it important to understand; You also (as mentioned above) need a CINE study and MRI's of your spine. One of the major related issues with Chiari is a blockage of spinal fluid (CSF) called a Syrinx. This can lead, if unchecked, to paralysis. At 9mm, your herniation is large enough to start a Syrinx.
After my surgery I did vestibular therapy and was actually surprised to see that it does help. I still get dizzy, but the therapy (also called "Fall Prevention") teaches the subconscious mind to catch subtle hints before you fall or lose your balance and I find that the number of actual falls I've taken has substantially decreased since I took it. I still get dizzy, I am just able to control it to a better degree. I walk with a cane and I can "catch myself". Or if its really a bad one, I can sit down on the ground rather than fall down.
A couple of things to avoid though; Chiropractors and Massages. Message therapists might be okay, but only under the order of a Chiari Expert.
Hi Alice- I am peachy, I also have a 9mm CM, I also have vertigo but I tend to list to the right, my problems have been going on since about 2004 or so. I totally understand you are freaking out right now and yes you have every right to. I don't have any ENT issues so I am luck in that department, I have also has vision issues. I can relate to what you are saying in your post on several levels as I am sure most people that have chiari can. I am not a specialist. I know what Dawn was saying by hoping that Shane would see this and reply, Shane is a "zipperhead" Shane has been there done that, he is one of the most knowledgeable chiari people I know, and if he says it you can pretty much take it to the bank. The fact is, many many great doctors are not up to speed on CM, even though they are great doctors, they don't have the latest information this issue or how to treat it, honestly it's my opinion that anyone with this problem who is experiencing issues needs to be seen by someone who is a specialist in chiari. Sorry for the reason that you are here but please know you are welcome.
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