Recently after a year of being tossed from GP to neurologist to Chronic Pain Consultant, I decided to pay for a full spinal MRI. It revealed that my tonsils are prominent and project just below the Foramen Magnum. I went and paid to have a consultant with a NS in Cambridge.
He told me that he that my Chiari was not the cause of my symptoms. I was shocked, and he said that I needed to go see a headache specialist.. Please know that this was the first time anyone had told me I actually had Chiari!! I asked him what about the research done on those people who have a smaller tonsillar descent than others, but have severe, life debilitating systems? He dismissed that and me and said that he relied on his own experience. He said I have no syrinx or from what he can see hydrocephalus, do you HAVE to have these 2 things to warrant help or treatment? Can you be symptomatic without them?
I have been confused and frustrated and feeling hopeless.
But today I have awoken feeling like I need to get a 2nd opinion, as I am sure my symptoms are from the Chiari and not just headaches/migraines.
My symptoms below:
Constant Severe Headaches
Intense pain and aching at the back of the head
Pressure behind the eyes and in the head and neck
Severe Neck Pain
Pain in the face (Nerve pain?) and some loss of sensation
Head pain, pressure when I get up from lying down.
Head pain & pressure sometimes when I’m on the loo. Almost like my head is going to explode.
Loss of sensation in hands & sometimes pins and needles.
Some loss of sensation in feet & sometimes pins and needles.
Weakness in both hands and legs. Definite loss of strength.
Nerve twitching, sudden jerks in legs and all over body
Dizziness and light headedness
Eyes sensitive to light
Eye sight can be spotty / fuzzy
Unsteady on my feet
Loss of appetite
Diarrhoea after eating meals
Constipation from the medication
Brain Fog, Confusion
Short term memory issues
Pain gets worse as the day goes on. But sometimes I wake up with pain as well.
I am currently on Gabapentin, Tramadol, Paracetemol and Cyclizine. And they are all making me SO ill but take the edge of the pain sometimes.
If anyone has ANY recommendations of other consultants in the UK or have had similar experiences or even can answer the question of whether I need to have a syrinx or hydrocephalus in order for the Chiari to be symptomatic? I'd be so grateful for anything.
I'm really in the dark, please help!
I'm 28 and I want to be able to enjoy life again. It all started going down hill in March 2015, but before I had some of these symptoms after severe whiplash 9 years ago, which have gotten worse.
Okay. SUPER Long post. If you've gotten to the end... CONGRATULATIONS AND THANK YOU.
missamerica87, unfortunately the Ben's Friends recommended doctors list does not cover the UK but a search for UK members may turn up some doctors they recommend. I would also suggest you contact the Ann Conroy Trust for advice and also take a look on the Brain and Spine Foundation site. Please, though, bear in mind that the NS may be correct because there are other causes of many of your symptoms that are also common to Chiari. A good doctor will work with you to figure this out. Take a look at this Discussion What Other Than Chiari Could It Be. I'm actually pleased to hear that you didn't see a NS promising you a miracle cure through immediate surgery, we see way too much of this false promise being made to our members here.
I agree with Jules in that you need to find a doctro who not just statates it isn't Chiari, but actually works with you to find out what it is. I know finding that doctor can be difficult, but that is the way to go in order to get better. Go to the pain specialist and try to get some answers! Research any resources that may help you!
Chiari doesn't need anything additional to be symptomatic( I have nowhere heard or read otherwise). Neurosurgeons may be reluctant to operate on less than 5mm because there isn't much deffinate science behind Chiari. Noone really understaands it. What doctors understand, is that creating more space for the csf flow should technically help, but at the same time isn't a cure. They don't know why sometimes the symptoms stay. I guess it's because noone has yet figured out how the brain works.
As for the doctor trusting only his personal experience in such a rare and poorly understood condition as Chiari- I think that says a lot! I think every physician should take into account trusted research by highly reputable specialists.
I feel your pain and suffer with many of the same symptoms as you. I was newly diagnosed in August 2015 and here in the US I was told over and over again that my symptoms “are not related to Chiari” … It’s so frustrating that I read over and over and over on feeds like these, where we are all diagnosed with Chiari in our adult life and all struggle with near identical symptoms, yet doctors all over tell us “it’s not the Chiari” yet NOTHING else shows on the tests except for herniated cerebellar tonsils on the MRI-- very visible and clear as day to read on and MRI, I’m an RN and understand it, yet neurologists and even NS tell me the same thing. I pray that one day we will be able to find more hope for symptom relief through education and research. Try to stay hopeful. There are great doctors out there who are knowledgeable with this… It takes time, but we just have to find them!
Unfortunately, Chiari is not a well known disease and many doctors simply don't have the experience with it to diagnose it properly. Also, doctors are egotistical and usually don't bother to research rare diseases like this. I have a doctor friend and he recommended trying an educational hospital. Also, many of the symptoms you are describing are related to other disorders. However, if you had the MRI and it shows that your cerebellum is crowded and there is tonsillar herniation, then you have Chiari! If you look at your MRI films and compare them to normal MRI, you will probably be able to see the crowding and herniation. Since the cerebellum is responsible for a wide range of things- movement, coordination, etc., crowding it will impact it's ability to function.
Don't let your Neurosurgeon tell you that your symptoms aren't due to Chiari. Get a second opinion. It sounds like your doctor is a jerk!! But typical. The symptoms you have described certainly sound like Chiari Malformation I. Hydrocephalus or syrinx- those are usually CMII or CMIII.
"The majority of patients complain of severe headache and neck pain. Other common symptoms are dizziness, vertigo, disequilibrium, visual disturbances, ringing in the ears, difficulty swallowing, palpitations, sleep apnea, muscle weakness, impaired fine motor skills, chronic fatigue and painful tingling of the hands and feet. Because of this complex symptomatology, patients with CM1 are frequently misdiagnosed.
Do some research and bring notes with you to your next doctor appointment.