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Hello. My name is Brenda Zamarron. I’m 21 years old. I have been experiencing strange symptoms for years now. All throughout my high school years I had horrible neck pain to the point where it felt heavy and i couldn’t hold it up. I was seeing a chiropractor for 2 years and they manipulated my neck three times a week. I stopped going due to it not helping and because I felt I was getting worse. After seeing them I started to have all these strange symptoms. A lot of them are neurological such as brain fog, short term memory loss, my vision has got worse, I see static, flashing lights, after images and fireflies. I get muscle twitches, burning sensations and recently I noticed my joints have started hurting and moving around a lot. I have muscle weakness in my legs, arms, and my back. I also have mild scoliosis. My number one symptom though is the neck pain and instability along with extreme pressure at the back of my head. I feel as if my head is a bobble head at times, and I noticed it will rock back and forth on its own. My health is gradually getting worse. I’ve had multiple blood work the past years for everything almost, such as autoimmune disorders and diabetes. Everything comes back negative. I had two mri’s done last year of my cervical and lumbar spine and they found some slipped discs. I have no idea how I got them. I also had an MRI done of my brain and it was normal. I’ve read up about Chiari Malformation and a lot of my symptoms seem to fit. I want to know if anyone has experiences with reading MRI’s and if they could help look at mine.
Hi Brenda,
I can see one or two things on your MRI. It is difficult to see where the lower edge of your cerebellar tonsils end, as the border is imprecise on the image and could in fact be lower down than it suggests, due to changes in signal seen at the two red dots. Do you have the images to each side of this ‘mid-sagittal’ one ?There is a subtle sign of instability between C1 and C2 where the green V is, also the rear of your C1 encroaches a little into the spinal opening. I can see that you have a loss of lordosis (which is the term used for the natural ‘C’ shape) of the cervical spine. There is a larger than expected space between the spinous processes (jutty out bits of the back of the spine) where I’ve put the two blue dots, it’s called ‘fanning’ and this could have affected the disks between those cervical vertebrae.
Hope some of this is useful.
Barbara
(UK)Thank you so much for the feedback. Could there be a cause for all this? Could any of this be Chiari related? I have to ask about Chiari because I have so many symptoms related to it, but have not yet been diagnosed. I have had no clear diagnosis as to why all these symptoms are happening to me…
Many of us have a multitude of symptoms similar to Chiari, without actually having the blatant medical ‘signs’, of what would be recognised in the medical world, as Chiari 1 Malformation. You see it’s not as ‘clean-cut’ as the medical fraternity think it is, it’s all dependent upon:-
changes in intercranial pressure,
subtle (or sometimes blatant) instability at the craniocervical junction,
restrictions at the craniocervical junction – caused by
herniated hind brain,
or malpositioned C1 vertebrae,
or anything else that can cause ‘crowding’ and hinderance to the flow of cerebro-spinal fluid, in that area.
Regards
Barbara
(UK)I see..thank you so much for your responses. I have got a lot of advice from another forum about my symptoms and that I should get another opinion on my symptoms from a neurosurgeon. I’ve read up about the Chiari Institute in New York and I’m considering sending my mri’s to them for another opinion if these doctors I’m seeing cannot help me. I have been given the run around from all kinds of different doctors saying that I’m stressed and depressed and those are causing my symptoms. It’s so frustrating because I know my own body and know something is not right! Here is a picture of my lumbar spine, If you would be willing to look at it and help me point out some abnormalities you may see. I will be posting my MRI of my head soon for some input on that as well. Thank you once again. Your help is greatly appreciated.
Unfortunately I don’t have enough experience in this area of the anatomy, to pass comment, sorry.
I travelled across the Atlantic to The Chiari Institute in 2008, in fact they confirmed my Cranio-cervical instability (CCI). They wrote a paper on how to determine CCI in Dec 2007. There’s a link to it somewhere on this website. They are an extremely knowledgeable bunch of people, especially Dr B, who’s amazing and a great educator. Have you watched the video’s on their website ? I spent days and days watching them and I gleaned an awful lot of very useful information from them.
Their method requires you to have nead/neck MRI’s in ‘flexion’ (head down), ‘neutral’ (straight up) and ‘extension’ (head back) positions. You then have to consider various angles and measurements, to assess whether it’s normal, or whether there’s CCI. Although it appears complex upon first reading, I managed to teach myself the method, so a radiologist should be able to pick it up, if they were instructed to do so.
Surgery has to be a last resort, so really you need to see if you can alleviate your problems by other means first. If you do have a collagen issue, it will be helpful if you can increase your protein intake, eat more eggs, fish, meat or poultry, especially eat the chicken skin and get as much proper chicken stock down you as you can. Also, eat vitamin C foods regularly throughout the day (fruit and veg, especially green leafy veg, red peppers, etc) or take supplements – but foods are always best. The magnesium absorbed from an epsom salts bath, can help the body to start to pick up in many ways, especially easing intracranial symptoms.
Regards
Barbara
(UK)Also, if you broke your leg, you wouldn’t be hobbling around on it still broken, you’d get it splinted, or a pot put on it, to immobilize it until proper repair had taken place. In my opinion, this is also necessary for the neck, especially for those with hypermobility/EDS.
If you can obtain a Philadelphia collar (and coolmax liners) and wear this during times when you are using your neck a lot, to keep your head and neck in good alignment and to help restrict sharp and angular movement, you have a better chance of recovery. Remember to clean the collar and lining daily to avoid problems.
Regards
Barbara
(UK)Their method requires you to have nead/neck MRI’s in ‘flexion’ (head down), ‘neutral’ (straight up) and ‘extension’ (head back) positions. You then have to consider various angles and measurements, to assess whether it’s normal, or whether there’s CCI. Although it appears complex upon first reading, I managed to teach myself the method, so a radiologist should be able to pick it up, if they were instructed to do so.
Surgery has to be a last resort, so really you need to see if you can alleviate your problems by other means first.
Barbara, thank you so much for looking at my MRI. Very helpful!
I read many of your other posts (and will read the rest) and it seems you were happy with The Chiari Institute and reccommend them. I don’t want Chiari surgery (and mine is probably under 5mm) so do you think I should still go to TCI? I am considering going to them or another NS who would do the different upright MRIs and diagnose CCI.
I am very afraid of the pain while having the MRIs taken. Should I just get a Philadelphia collar on my own and forget about an official CCI diagnosis? So few doctors have any inkling about any of these conditions and I wonder if they would ignore or shrug at the CCI diagnosis. Has anyone been helped by the diagnosis?
I need a doctor to investigate with Cine MRI and other imaging. My symptoms match Dr. Diana’s theory well – hydrocephalus but low pressure below the skull. CCI seems to be a part of why my CSF flow is off, but a CCI diagnosis alone may not help.
Hi Violet,
No problem, glad to be of help, just wish I’d more time and energy to dedicate to it!The only real thing a diagnosis can do, is make you more informed about the nature of your condition, thus making you more knowledgable about how best to manage it (know thine enemy!)
If it is craniocervical instability (CCI) then it is CRUCIAL that you restrict any action that is going to apply subtle pressure on your brain and brainstem – or your future could be very bleak! The trouble is, unlike any other area in your body, if you are subtly damaging your brain/brainstem, you feel no sudden pain at the time, just maybe enhanced dysfunction symptoms (i.e. tachycardia, or numbness/tingling, or lots of other things) at the time, or at a later time. In my book, it’s in your best interests to treat it as such – until proven otherwise, that way you have everything to gain and nothing to lose. If you suspect it, in my experience a Philadelphia collar is best, as a soft collar does not support the head sufficiently and can be worse than not wearing anything.
For anyone interested in The Chiari Institute method, that’s the Bolognese/Milhorat/Francomano method for determining craniocervical instability, which I mentioned earlier, here’s the paper:
Regards
Barbara
(UK)Thanks. Great article. So you have learned to measure xray/MRI of c-spine like they do. If only more radiologists could be taught do look out for CCI, PTC, Chiari, etc.
That’s scary. I feel like I have to move my neck and let it crack and pop, or be in more pain.
I’m going to try a collar. Sleeping in one sounds hard.
So if I get the 3 positions of MRIs I can know for sure I have CCI. I know I have something where my head feels like a bowling ball like Dr Diana said.
Yes, I’d be happy to do that if anybody wanted to post their ext/neut/flex MRI’s but I couldn’t do it overnight, it would take me a few days. It must be 6 or more years since I’ve applied that technique but I’ll soon remember it, once I get going.
If it is craniocervical instability (CCI) then it is CRUCIAL that you restrict any action that is going to apply subtle pressure on your brain and brainstem – or your future could be very bleak!
Can I wear a Philadelphia collar with my existing issues? My neck curves the wrong way and the vertebrae don’t line up as they should. A cervical vertebrae is getting close to the spinal cord. This is a hard collar, so won’t it be trying to force my neck into the normal position, which is very unnatural for me? Or will it conform somewhat and give me support for my neck’s usual position? I really want the support. Just checking so I get a collar that works.
I also have a retroflexed odontoid with a lot of pannus (if I’m interpreting my brain MRI correctly). I have not looked at my c-spine or rest of my spine yet.
(Barbara, I realized today that the MRI image I sent you was not the middle slice. The green circle part you saw seems to be pannus, but the odontoid is only visible in the middle slice.)
I read other posts of Barbara’s about using the hard collar instead of soft. I am feeling like the hard collar could be worse on my out of place neck. I believe when my head is in its usual position, my odontoid and cervical vertebrae are pressing less on my dura. If I use a collar to reposition my head into normal position, it would be pressing more.
Update… decided to order a Philadelphia and see how it feels. I know most others will be too soft.
If it is craniocervical instability (CCI) then it is CRUCIAL that you restrict any action that is going to apply subtle pressure on your brain and brainstem – or your future could be very bleak!
Can I wear a Philadelphia collar with my existing issues? My neck curves the wrong way and the vertebrae don’t line up as they should. A cervical vertebrae is getting close to the spinal cord. This is a hard collar, so won’t it be trying to force my neck into the normal position, which is very unnatural for me? Or will it conform somewhat and give me support for my neck’s usual position? I really want the support. Just checking so I get a collar that works.
Difficult one this. I wouldn’t want to make your condition any worse. I can only tell you of the benefits the philadelphia collar brought me. I had the ‘loss of lordosis’ amongst other things and, I have to report, that my neck alignment was much better after wearing this collar for a while, as a subsequent x-ray showed great improvement.
Regards
Barbara
(UK)
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