Chiari Online Support Group

Discouraged; New to the diagnosis


#1

I am newly diagnosed with 4mm cerebellum tonsillar ectopia after an MRI because of a TBI concussion/whiplash car accident.

I am very discouraged as the doctors I have spoken with are dismissing the possibility of my symptoms being related to the Chiari. I have had ongoing issues with headaches, memory, speech, dizziness, left arm numbness and neck pain.

I am going to see another doctor… please let me know anything I should share to help my case for this to be, at least, looked into. And what should I do in order for the symptoms to be validated or not… a CINE MRI?

Thank you in advance.


#2

You do not say when you had your car accident and if you had actual treatment for concussion and whiplash. Motor control assessment and treatment for neck and shoulder, neurodynamic assessment and treatment for neck, thoracic, upper arm nerve sensitivity, primitive reflex exercises for dizziness (listed here in detail on this site), proprioception for neck positioning, oculomotor exercises. Maybe you need graded motor imagery expercises to normalize your brain’s connections with your body parts? Also keep in mind that pain and stress do a number on memory. If you do not know what these assessment and treatment techniques are chances are that you have not had sufficient treatment for concussion/whiplash injuries. Chiari head ache is not the only option for a head ache, I have posted an excellent link to a headache info site.

Also, if these issues are not dealt with and you do indeed have Chiari, then chances of a good recovery post surgery are not as great. I for one, would have liked to have had this information and treatment options available to me prior to surgery. A quick diagnosis and surgery for Chiari does not always lead to a good outcome, especially when dealing with large amounts of external forces exerted on the brain, cervical, and other tissues. Are these other tissues healthy and working optimally? Just another way of looking at your situation - perhaps not one that you are wishing to hear if you are currently looking for a surgical option.

Good luck in healing


#3

Hi, welcome. I’m in the same spot as you so I can’t give a lot of helpful info. In Jan I had an MRI for headache/neckache etc and was found to have a borderline Chiari and it was pretty much brushed off. Like you, I have ongoing issues and I’m also angry at the doctors and their lack of answers and help for this.

Would it be helpful for you to have someone go to the doctor with you and speak up on your behalf if the doctor starts to dismiss you? If the doctor dismisses the possibility of Chriari can you ask him/her why they think you don’t have it? Sometimes doctors are quick to write something off and they may rightfully be doing so, They don’t realize that it would be helpful to us to know the reason for their dismissal.


#4

I was diagnosed in July this year after having a horrible migraines for weeks. I knew immediately that this migraine was different than others I had before. I was lucky and found a Neuro doc that actually listened to me. I think that is the key. The Neuro surgeon I was referred to was a JERK so I did my research. My advice is keep going til you find the doc who listens and will run the test. The worst thing they can do is tell you what you have already heard. Good luck.


#5

Hi! Your story is very similar to mine, so I feel your frustration. I was in a horrible car accident 6+ years ago and since then have fought debilitating headaches and a lot of the Chiari symptoms. In 2015, an orthopedic first mentioned the possible Chiari, and a neurosurgeon immediately shot it down, because the herniation was 3mm and started with an accident. The more I read about it, though, the more Chiari just seemed to fit what was going on. I went for a second opinion, and I was told it could not be Chiari because it started with an accident. No one could help me get better, though, either. I just went for a third opinion in Milwaukee and the doctor said it is Chiari. He spent over an hour examining me, looking at all of my imaging (priors MRIs, x-rays and his own), asking questions, answering questions, etc. He eliminated other possibilities and ultimately gave some suggestions and told me, I would be a candidate for surgery, but that was my decision for the if and when. He has created some of his own images and one showed a view from the brain into the spinal region, and it is very clear, how badly the right side is blocked. I went into the appointment not wanting him to say it is not Chiari because of 3mm or because it started with an accident, and I was relieved to leave there knowing that it has not all been in my head. My advice is to keep looking. I wanted to see this doctor, because they do a range of tests, so even if I had not received the Chiari diagnosis, I would have left there with some ideas about what was going on and what to do. When looking for another opinion, read the doctor’s site carefully to see what their thoughts on Chiari are (in your case, whether or not it can start with an accident) and what testing they do. The more thorough they are, the better they would be able to help. Good luck! This is not an easy path!