Hi! I've recently been diagnosed with Chiari after hitting my head at the playground with my daughter. The ER said it was a concussion and rest. The pain got so incredibly bad that I went back again and they did another CT scan and gave me pain meds and told me to follow up with my regular Dr. I went to him the next week knowing there wasn't anything he could do for me but he looked at all the notes from the ER and saw that the technician noticed I had Chiari Malformation. That was news to me. So he told me I needed a neurologist. I went to him and he didn't seem to be concerned about Chiari but had me get an mri anyway. Since that appointment, I have gone down hill. I have numbness/ tingling in my legs and arms and feet, palpitations quite regularly which I feel like I'm going to faint, lightheadedness, dizziness, can't remember things or focus, my neck is causing all sorts of pain.
I just got back from neurologist and he said he can't believe the change in me. He thinks it's due to stress from my concussion and not being able to work. He put me on lorazepam 3 times a day so I calm down and all my "symptoms" will go away. Honestly I feel very upset by this. I'm pretty sure he thinks it's all in my head. I don't know what to think. He said that it measured 8mm. I'm very confused on what I should do. Any advice would be appreciated. Thank you so much. It's so great to have people to talk to who have gone through or are going through the same thing.
Thank you so much Abby. I will check that out. How do I go about getting tested for other illnesses like dysautonomia? I can't see my neurologist doing that. I feel stuck.
Abby said:
Stacy,
Some of us find out about us having chiari after a fall or whiplash. I am sorry your having so much pain and struggling with the symptoms. I am seeing some other symptoms that are in the mix that may be related to dysautonomia. I know what? I just learned the word Chiari Malformation, but many of us also have dysautonomia that goes along with Chiari. The website DINET.org is a wonderful place to learn and it has all the symptoms. If you can't find it, please let me know and I will post it for you.
Glad your here and wonderful to meet you.,
I also had symptom come on real fast after a whiplash. Just curious, is your one shoulder lower than the other and is that corresponding leg appear to be shorter?
The shoulder has always been lower but I don't think the leg is. I've never noticed that it was before.
Karen in Toledo said:
I also had symptom come on real fast after a whiplash. Just curious, is your one shoulder lower than the other and is that corresponding leg appear to be shorter?
Thank you Abby!
Abby said:
Your neurologist can order the tilt table test. I had mine at the hospital by a cardiologist. I am sure your GP could also order this test.
Thank you Emmaline. I was just researching NS. I just felt like I was being treated at a psych patient today. This is all so frustrating! Thank you so much for the great advice. I will be calling them tomorrow to make the appointment. You all are so great!
Emmaline said:
Stacey you had the classic NL response to Chiari! Welcome to the not so popular club...
As you know now NL tend to minimize Chiari, and treat with medications. That's all fine and good, but it doesn't address the fact that your brain is slipping down the back of your skull. Please get into a NS, one that has experience with Chiari. A NS will do a Cine MRI which will measure the spinal fluid flow in your brain, something that is pivotal when considering surgery. If the flow is blocked by the herniation, that tells your surgeon whether surgery would help you.
We can help you along the way, you're in good company here. =)
Hi, I am, Mike's wife, Chris. Mike has the same symptoms. He banged his head in 2010. You may need to go to a cardiologist for the fainting. They can do a tilt table test. Mike needed the longer tilt table test. Mike has POTS but Cleveland Clinic said it is not a classic case that something else could be causing it. We went to about 20 doctors. Mike was told by a NS his Chairi was not bad enough and the flow looked good. However, when he got the cine MRI it showed no flow. He got decompression surgery, but got worse. He was told he was stressed or crazy many times. Recently, Mike is having seizures. It may be due to pain one doctor said.