I went to dr. because I was having a host of symptoms, pulse in my ear, migraines, foggy brain, memory and word problems, and one of which was neck pain. Well the neck pain was actually not all that bad, maybe brought on by poor posture. Well she ordered an MRI, and it show a 5 mm herniation chiari 1 malformation. My neck pain has increased to the point where it feels like I have whiplash, though I haven't done anything to cause it. I have the mri images, it doesn't appear to show a syrinx
I was referred to a nuerologist who doesn't think that the Chiari is related to my neck pain or any other of my symptoms. Does that sound right? She put me on Amitriptyline, which is making me feel worse .
Has anyone else experienced whiplash as a symptom?
I actually had whiplash from an accident many yrs ago....I feel it exacerbated my issues...were u in an accident, or have a fall that may account for this feeling or the term whiplash?
many of us here have heard from NL and NS alike that chiari was not the root of our problem, but there is never nething else that offers a reason for the symptoms.So they offer band aids and meds and suggest we have anxiety and depression issues.....
U may need to travel to get to a true chiari specialist , a NS that has his focus on chiari is the best choice for an opinion oh where and what u should do next.
Gad to have u as part of our little family here , sorry the reason u had to seek us out.
Hello! You sound very similar to myself. I was also sent to a neurologist that just wanted to keep changing headache meds. One of the things to know is that meds do not help Chiari so if this is what you are trying to make better the pills don't help. I finally got so frustrated with them giving me pills that I went to a different hospital looking for help. If you want Chiari information and help then really listen to everyone here... you need to find a neurosurgeon that does this type of work. It took me about six months to get to someone that would listen. But once I found that person I felt so much better to just have someone "hear me"!
The neck pain that never really goes away is annoying! I think I get used to the neck pain, for me the chiari headaches (the ten seconds of terrible head gripping pain) when you laugh, cough, or strain make me the craziest. My next big complaint would be the brown outs... I am so sick of standing up and having my eyes dim and I am once again looking for something to hold on to while the faint feeling passes. Everyone seems to have very different complaints, it is really interesting.
If you feel that the Chiari is causing you problems the next tests you are looking for are the CINE MRI to check the flow of spinal fluid and the spinal MRI to check for syrinx in the spine. Because they now say it is not the size of the herniation you really need to check the spinal fluid flow to know what is going on in there :) Good luck on your journey, it can be very frustrating but it is wonderful as you find answers.
Keep fighting to find someone that listens... My first neurologist (when I asked her about the head pain) told me , "no, I don't really know what causes it".... time to find a new doctor! Also, you will find so much support and kindness on this board. They have been wonderful in answering so many questions!
One of the first really bad symptoms I noticed was the really bad neck pain. I too, thought it was posture or to do with my work outs but it kept getting worse and worse until I couldn't ignore it any longer. I don't know how you find it but I found it would come and go in severity so I held off going to the DR for awhile b/c I would think it was getting better...then it would get even worse again.
I would have to agree with what Zygy and Selma are saying...try and find a doctor who really knows something about Chiari. I know how hard it can be to find a Chiari specialist..there are none in Canada that I could find but I did find a great NS who knew his stuff and I finally got someone to listen to me!!! I was ignored by my GP and NL and was getting no closer to getting a diagnosis (my chiari on my MRI was not noticed or ingnored so I didn't know about it until 4 months after). It really took finding the right DR which as fate would have it..he kind of landed in my lap. So don't accept DR's with a lack of knowledge keep looking for a better one b/c I guarantee you it is Chiari causing that neck pain.
Thank you for your responses. I had whiplash from a car accident about 10 years ago, so this pain feels exactly like I felt back then, in addition to what feels like a deep pain in my neck but yes, I do feel like it comes and goes in severity
I was going to give it some time to see if the neck gets any better, if it doesn't go away then it must be related
In your experiences, would it be better to see a NL or NS? The NS I talked to said he would to a cine mri if I wanted to see him (from the same hospital as the NL I am seeing, friend of a friend)
If I had a syrnx in my neck, would it have shown in the mri for my head?
Hi......well a syrinx is commonly found in the cervical spine, so u would need a MRI of that area, but they can also be found in the thoracic, and lumbar spine as well....plus, if u have them all done u can also rule out tethered cord.....and a CINE MRI should be done as it is one of the main reasons that a NS looks at to consider someone for surgery....Cine is a flow study....
This is more so their field than a NL especially since a lot of times it turns out to be surgical. I had NO luck with NL as I said and I would not be where I am today if I hadn't seen my NS!
As I said, mine just fell into my lap..he was a client of my husbands right around the time that my leg started dragging and my muscles started to get spastic. My husband asked him about it and then we saw him one day at a fair and he saw the way I was walking. He knew I was seeing a NL so he waited for a bit and then called my hubby to see if I was getting anywhere. When my hubby said that I was getting the run around he told me to get referred to him and he saw me at his clinic. He then promptly diagnosed the Chiari and did the surgery 3 months later. I couldn't understand how my absent gag reflex and the CM on my MRI got past all the other doctors and he told me that this was something that was more his field than a NL so I was just very lucky as fate would have it!! Unfortunately, we don't have Chiari specialists in Canada but I do believe you need to keep looking around for the right doctor..one that wants to help and has an open mind. What struck me with my NS is we sat down and just talked about everything for almost an hour...no DR had ever done that for me before!!
Hi jenbes! From my personal experience a NL will not help you! They just wanna give you pain meds (I've been to 4 different NLs) it took me sending my mri's to wisconsin (i live in mississippi) to get a TRUE chiari specialist to see me and say "Yes your chiari is causing these problems" Now i'm not saying you have to go that far away, you may be able to find a specialist closer to you, although most of us do have to travel to get the help we need. I will tell you , at least in my case, the neck will only get worse! I actually was told by one NL that my neck problems were from whiplash 10 years ago, but he didnt think mywas causing any of the problems chiari ! LOL Anyway, yes you should see a NS and preferably one who specializes in chiari and its associated disorders. Blessings ~ Shannon
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