First time here, battled with severe pain for a year now. Kept being thrown medication, which is also making me sick, but the one doctor I saw has thrown me in the chronic pain pile. It's a much longer story, including trying every conventional treatment from chiropractic care to acupuncture to everything else. But they actually made my pain WORSE!
But after another clinician encouraged me to get another cervical MRI, they actually looked at my foramen magnum and saw the pictures below. Of course it may not meet the 5mm, but I am seeing a neurosurgeon next week for him to look at my films.
Some of my symptoms include:
Constant Severe Headaches, the worst I've ever had and very different to normal ones.
Pressure behind the eyes and in the head and neck
Severe Neck Pain
Pain in the face (Nerve pain?) and some loss of sensation
Severe Nausea
Loss of appetite
Loss of sensation in hands & sometimes pins and needles (worse than feet).
Loss of sensation in feet & sometimes pins and needles.
Weakness in both hands and legs
Diarrhoea after eating meals
Dizziness
Clumsiness
Not as steady as I used to be on my feet
Heart Palpitations
Brain Fog
Short term memory issues
Head pain, pressure when I quickly get up from lying down.
Difficulty swallowing
Pain gets worse as the day goes on. But sometimes I wake up with pain as well.
I have no quality of life anymore, I've had to completely stop work, I have no social life and I'm meant to be a vibrant 28 year old female enjoying life and now I'm confined to my house.
I would love to have some advice and thoughts, even if you've experienced similar or can see something on the MRI.
Hello missamerica87, welcome to Chiari Support. We're glad you found and joined us for support.
Sorry that you are suffering so much at the moment. Though we get occasional visits from medical doctors, this site is not routinely supported by medical professionals. Nobody here can diagnose you or comment with authority on your MRI so we are strict with our Community Guidelines and Site Etiquette on this issue.
We we ask any members responding to keep their replies within site guidelines and that you validate any information you take away, against the experience of a licensed medical doctor.
No, you don't need to take it down because people will respond with their own experiences, but what we need to avoid is laypeople trying to do the job of highly skilled and qualified medical professionals (the community had historical issues with a few members attempting to do the diagnostics for other members ... outright dangerous, I'm sure you'd agree). Jules
You will probably need more tests- MRI of cervical and thoracic spine to see if there is anything there blocking cerebral spinal fluid. If the tonsil is only 4 mm, they may not think it's worth operating on, but then I'd see another doctor for a second opinion. In my research I'm finding not many doctors actually understand this disorder. There are many different opinions on whether surgery is helpful or not, but if your brain is squished inside your skull and you have such bad symptoms, it seems there might be a correlation there.
Even if you don't have an extended tonsil going into your spinal cord, the lack of space for the cerebellum to sit in is going to cause problems. Plus your symptoms sound like the ones I've researched online.
I attached a pic of normal vs chairi- gives you a reference point. Look how large the cerebellum with Chiari 1 is compared to the normal one. FM stands for foramen magnum which is the hole that the spinal cord goes through.
The one on the right is your photo. Now I'm not a Doctor, but I have had some medical training and I did dissect brains in my anatomy class. Anyone can tell that the cerebellum on the left looks smaller and has more space around it for Cerebral Spinal Fluid to flow.
Fun tip for today: You can download audiobooks and listen to them on your iPhone if you have one. That may save your eyes if they bother you and it saves a trip to the library. I'm assuming they have this in UK.
Where are you from in UK? I lived in London for 3 months in college in the Earls Park area. Also visited there again five years later and then in Scotland in 2009.
I think you can get Audiobooks online, if you have a library membership. Here you just need a library card number and password. I'm also looking at trying to get "Talking Books" downloadable books online- they have lots more selection.
I'm not allowed to drive anywhere so I do everything online. Thank God for Amazon!!
You have to be VERY INSISTENT with the medical people- otherwise, they don't make an effort. (In my experience). I TOLD my Resident that I needed a brain scan. Then she had to check with her supervisors before she did it. General Practioners don't have enough experience to know about Chiari.
An alternative to drugs for the headaches: try some Lavender Essential Oil mixed with coconut oil- you can get cheap on Amazon or Bulk Warehouse and Lavender is really good for headaches and relaxing. You can put straight up Lavender Oil in a diffuser or mix it with the carrier oil (coconut) and rub it on your temples and back of your neck. Smells good too!
I'm sorry Miss America for your protection I had to delete the images as they contain to much personal information that could identify you to some bad folks. As far as other images being posted for even informational purposes please be aware that you need the permission of the owners to do so. A link to the original source may be okay with permission of the owner of the site.
No problem. There were a couple of others that were not yours on some posts. One of them was a CINE image which are at best a marketing tool for the unscrupulous. Best of luck. keep in mind that a lot of docs "don't understand Chiari" because there is simply no clear "science" to understand. Chiari clinics are being shut down and even docs being prosecuted for pushing "understanding" and selling false hope.
missamerica87 said:
Okay no problem, thank you for your protection. Those were all my photos so I didn't use any third party images.
TJ1 said:
I'm sorry Miss America for your protection I had to delete the images as they contain to much personal information that could identify you to some bad folks. As far as other images being posted for even informational purposes please be aware that you need the permission of the owners to do so. A link to the original source may be okay with permission of the owner of the site.