Hi everyone. I really need encouragement. I have been to neurologist and my own doctor. No one knows what to do. I’m on pain killers which ease the pain a little but still in a lot of pain all the time. Neurologist told me I shouldn’t have pain in the back of my head as I haven’t had surgery. I have a lot of pain at the back of my head. It is painful to lie down or even lean my head on anything like the back of a chair. Im tried of pain. Neurosurgery have discharged me back to GP. GP doesn’t know what to do. Is back of head pain normal. As well as pressure and pain above the eyes. Nausea and sometimes really slow speech. I sometimes have to really concentrate on my speech when headaches are very bad. What do others use for pain. . I’m living in New Zealand. Tried to find support here but No one has replied. Feeling very alone and isolated.
I would say you need to get second (or third) opinion from a neuro, preferably someone with an interest or specialty in Chiari. You may also want to go through the standard migraine processes such as keeping a headache and food journal, I say this because you mentioned pressure and pain around your eyes, nausea, and slow speech, those are all potential migraine issues.
Chiari headaches typically start at the back/base of your skull and wrap around your head. Migraines typically start up on the side/top of your head and are more to one side with other random problems like eye pain, nausea, light sensitivities, slurred speech and so on. Migraines can also cause external tenderness sorts like what you mention along the back of your head but are not typically focused on the back of your head, back of the head is more Chiari in nature.
I’m not sure why the one doctor equated pain to surgery as they two are not related unless you’re actually recovering from surgery, people have pain for all sorts of reasons.
Confused yet?
At the end of the day I suggest keeping a migraine/headache journal that includes weather patterns and what you consumed as well as getting to another neuro with more experience or interest in Chiari and/or migraine. Something is clearly going on, you need to figure it out.
azurelle
Dear Bella3,
Yeah. I never had a single headache all my life - or needed even an aspirin - until Chiari symptoms started. My headache was exactly like yours. It started in the back - the base of my skull. Thing of it was, I was in Guatemala at the time, and the Dr. down there thought I was having an aneurism! An MRI showed no anyerisms, but did show Chiaris. However, only a knowledgable neurosurgeon was able to see it - ten years later!!! GRRRRR.
That was really messed up.
Turns out, the “Chiari squish” - which is something genetic that you are born with - can affect you anytime in life. I was born blind in one eye. But, there is nothing wrong with the eyeball itself. None of the eye docs could figure it out, or fix it. NOW they know the connections in the optical center at the back/base of the skull got squished because of the Chiaris. That’s why I was born blind in that eye.
I was not quite clear what type of doctor you have seen. My understanding is a neurologist. Please be aware that neurologists lean towards medications for treatment. They also have more or less experience in dealing with people with Chiari. I have seen 4 neurologists over the past 20 years and only one, who had been working for 30 years had seen another Chiari patient early in his career. Needless to say, I found neurologists to be unhelpful in diagnosing and knowing what to do with me even when they were hit over the head with my diagnosis. I bring this up to point out that neurologists have different knowledge bases that do not always include Chiari. Again, their approach to treatment is going through a variety of different medications.
A neurosurgeon is the one who is more apt to actually look at your MRI images, not just the radiologist report, and determine if you have Chiari - in conjunction with your signs and symptoms. They will look at sagittal and horizontal views of your skull to determine if Chiari is a concern. They will perform surgery or not.
My point is that it often takes many appointments with different doctors in different disciplines to determine what is going on. And to find someone who has the knowledge base to help you. It is not that the doctors are being difficult, it is that they do not know what is wrong with you and how to help you. They are not magically going to figure it out. A neurosurgeon is going to have the most experience dealing with Chiari - a referral or two to them will be of the most help in gettinga diagnosis and a treatment plan. It may take a few doctors who are even willing to do that.
It is a long process when dealing with a more rare and poorly understood condition. Good luck in your journey, shed a few tears of frustration and disappointment then on to the next phone call to reach someone who can assist you.
Thanks for your replies. That’s helpful. The first neurosurgeon I saw was the one who said i shouldn’t have pain in the back of my head. He was the one who gave me the diagnosis. New Zealand is a small place without the knowledge of the U.S… the neurologist I saw discharged me back to GP with no help with medications saying if I was really bad to come back to emergency department. There isn’t a lot of choice here for neurosurgeons or neurologists. At the moment I take amitriptyline at night but wake every morning with pain at the back of my head. Then I take brufin during the day. . Appreciate all your advice.
Hey Bella,
Being a former Kiwi myself, Kia Ora.
“New Zealand is a small place without the knowledge of the U.S” this statement I could not agree more with. Although my situation is not chiari, it is neurological and was misdiagnosed for many years, the first 20 of which were in NZ. So I know trying to obtain a supporting dr may be difficult.
From my neurological journey and experience, all 3 other posters here make some very valid points. Neurologists work on theory, where neurosurgeons work on the physical brain. In real basic terms the theory says that chiari shouldn’t occur, but physically we know it does. Theory says you shouldn’t be having pain, but you physically do have pain. WHY? You need to see a neurosurgeon who deals in the physical, not a neurologist who deals in theory to work out WHY.
GP’s are general practitioners and for general medical they can be good, but outside of general they have very little knowledge.
I now live in Australia, so I’m a bit out of touch with the systems over there now. But here we have GP’s, then we have physicians. A physician’s role is to find out the ‘why’ then refer you to the relevant specialist. So for me they ran me through all sorts of tests, everything from bloods to scans and from here a referral was made. Now, I must admit nothing new was found by the physician but all the tests and examinations eliminated any other causes. For example, I had neurosurgery and was told “All fixed” but it wasn’t. I have chronic pain behind my eyes. I had gp’s telling me I needed my eyes checked, so I did it and got glasses. The pains continued. I was told it was all muscular/skeletal , so I went to a physiologist. It was not muscular/skeletal. I also saw a neurologist who told me if his treatments didn’t work it was psychosomatic. His treatment didn’t work, so in his view the problem is all in my head. I KNOW THE DAMN PROBLEMS IN MY HEAD, but he meant psychologically. GGgggrrrrrrrrrrrrrrrr. But by eliminating those cause/effects it gave the medicos less options to be blaming those things as the cause/effect.
In my opinion, you need a physician to take on your case rather than a GP. A specialist who can look into all other aspects, rather than making a 10minute assessment and diagnosis. A neurologist ‘may’ look at scans of the brain and say “It’s OK” but a physician will also look at other areas and not just one specific part/component of the body.
So, please,
Take Azurelle’s info “…Something is clearly going on, you need to figure it out…”, Take BethR’s info “…only a knowledgable neurosurgeon was able to see it …”,
Take gabby_jazzypants info “…My point is that it often takes many appointments with different doctors in different disciplines to determine what is going on…”
and
Take my info “…Get yourself a physician to investigate…”
We are all making some very valid points. These ‘Medical Professionals’ make out they know it all, well I’m telling you, they don’t. Some dr’s don’t like protracted cases, but the brain is one of the most misunderstood organs in the body and still today they don’t ‘know-it-all’, but they won’t admit it. It’s easier just to get you to walk away. DON"T.
Get yourself a physician to investigate. What is going on?
Merl from the Moderator Support Team
As a final thought to what Merl said… there’s a reason it’s called The Practice of Medicine.
Our bodies are amazing. So much so that we only have a vaguest idea of how it all works, the majority of what we do is trial and error, particularly with a rare condition. You’ve just become the lead investigator!
Hang in there, don’t give up, keep good notes, and keep going and going and going. Eventually it will get worked out.
azurelle
Thanks so much. Really helpful everyone. I will become my own advocate and bring my own information and research to my doctors. Thanks so much for this group. It makes a big difference knowing others understand what I’m going through though I’d rather none of us had to. 
A bit of a hint:
Some dr’s can get REAL anti when you consult ‘Dr Google’ (mine did), so be careful on how you present your research. I identified an article to a neurologist and told him it was from the internet. He got really annoyed and I was told “well, if you’re consulting google why are you here to see me?..”
I’d be starting off by presenting your own personal information and reports, then saying something along the lines of “…someone mentioned “scenario X”…” rather than “…I saw on the internet “scenario X”…” just to safeguard yourself.
Merl from the Moderator Support Team
Hello I have Chiari I was diagnosed in 2013 at 45 though I was almost certainly born with it. I had the headaches you after becoming sick i. What looked like I was having a stroke do to slurded speech difficulties focusing chest pain and severe headache I was rushed to the hospital. Once the checked my heart did a CT scan of my head and it was normal they thought I was a hypochondriac 
. They kept me however for further testing when the did an MRI the next day the found my tonsils were herniated 16mm. I was then informed I had Chiari which explained the specch, brain fog, and headaches . I was referred to a Neurosurgeon I Choose Dr. FRIM at the University of Chicago Medical Center as he is one of a Dr. That actual is studying the condition and was very good. I emailed him a he responed back to me directly . I had my surgery not just because of the pain but because I had a Syrinx fuildin my spine as well be cause of the Chiari. Googling Dr. DAVID FRIM ,John Hopkins and other resources my help you to find better resources near . Wishing you all the best. Stay positive your not alone.