Hi i too think your symptoms fit. We have probably all had bad experiences with our specialist at some stage so try to ignore the bad comments and find a new neuro. I am in ireland and neuros are hard to come by but sometimes i feel so frustrated with the one i am with. Stay strong.
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I understand your frustration. I recently had an appointment with a neurosurgeon he was very nice for about 5 minutes and had a plan for a different MRI and treatment options and tests but I left crying he made me feel so bad like he was offended he had to breath the same air as me completely dismissed my symptoms once he realized my insurance was about to expire. I kind of knew things were going to go badly after I saw all the magazine covers framed you know the ones that look like a kid made them for fathers day gifts (lol). The last thing he said to me in the hall was I will let your doctor know it is not going to kill you just grit your teeth and deal with it in a very snarky manor.
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Hey Jolie48,
I can completely empathise with your experiences and frustration. I had a similar experience. As requested by my surgeon I attended his rooms pre-surgery. The operation did not go according to plan and I made another appointment to see him post-surgery. The appointment started out OK, but when he established that I did not have insurance he promptly sent me on my way.
Now, I’m in Australia and here the public health system is comparatively good. You don’t NEED to have private health insurance unless you are being treated in a private hospital. In many cases it can be the same surgeon operating on both private and public patients, as was my case. But, usually, any follow up for public patients is done in a public hospital, with long(er) wait times and sometimes appointment cancellations.
With the surgeon telling me to come to his rooms for the pre-op assessment, I made the post-op appointment at his rooms. His reaction was very dismissive with a ‘Ohh don’t worry about it…’ sort of attitude. So I got a 2nd (and a 3rd) opinion and both of them were in agreeance that something did need to be done. Sure, OK, it may not ‘Kill you’ but that shadow hanging over you, weighs a lot and mentally can really screw with the mind. Some of these medicos can become a little ‘snarky’, thinking they know-it-all and how dare we question THEM. But you have every right to ask questions about your health whether they like it or not.
If you know in yourself that something is not quite right, get a 2nd opinion IMHO.
Merl from the Moderator Support Team
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I can’t imagine how difficult this is for you. I live in England and healthcare is free, thank goodness.
I got diagnosed in December and referred to a specialised unit in London and as easy as that had decompression at the beginning of feb. All my medications ( literally a truck load) free too for the next few months. Please keep going I had very similar and severe symptoms what you describe - I had a few signs over the years but really it came out of nowhere the pain literally had me on the floor out of nowhere. Scared the hell out of me.
I’m week 4 post op now. We don’t chose our surgeons here in the UK you just get referred they are a specialised group that deal with decompressions and shunts, so apart from experience all the same really. - but bloody hell if I lived in the states I would do my research and keep pushing until I felt/ knew I had the right one. -maybe go from reviews? They shouldn’t treat you like that! That’s awful. How is that professional???
My surgeon did say they don’t always operate on chiaris - it’s only when the client is in severe pain and/or has syrinx too. Make sure they have MRI of full head neck and spine. They made sure I had several from when I was diagnosed to surgery to ensure nothing had changed. (Also could be Timor’s/cysts/fluid leaks)
Please keep going, don’t be disheartened you need this fixed and it can be x
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I am truely done with doctors for mine. I was diagnosed with mine 2005, ended up on disability after 2 yrs fighting, first doctor found it and I have had 3 MRI’s since that say I do not have one. I had symptoms for years going to Chiropractor and PT. I learned how to live with mine but I know I am blessed. When I was going from doctor to doctor and nobody believed me, i hurt all the time. When I stopped stressing and starting just enjoying life the best I could, it stop bothering me so bad. My eye doctor just told me I have the damage from the chiari and it only happens once. No further damage will occur. Nuero said thats not true. Does not do damage. I did see a chiropractor and he adjusted me for the chiari a few years ago. I wonder if that changed it but alot of my symptoms went away. He had a book about Chiaris in his waiting room. I still have brain farts, stumble alot and fall down if I am not very careful. Torn rotor cup needs repair now and the only reason I went to neuro this time. Will not ever tell another doctor I have it.
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I had the exact same experience. The neurosurgeon seemed bothered that I had already seen two other neurosurgeons…12 years ago! Maybe he’s not aware that symptoms can progress?
I was told I need to see a psychiatrist as well. He said he did not know what the cause of my symptoms was.
At this point, 13 years since diagnosis, I am getting the expert opinion from a physiotherapist as well as a psychiatrist. I don’t believe I will get answers but I am doing my best to cover all avenues, since no one else can do anything for me!
By the way, my symptoms are the same as yours. Fatigue and weakness off and on, migrain with sinus inflammation so bad I can’t lay down, along with stiff neck. Can’t lay on my back as pressure seems to build, even though neurosurgeon said it wasn’t csf related. I do have sleep apnea that is worse when sleeping on my back! Body aches in arms and legs. Neck pain that always lands in my right shoulder and up the right side of my head. Small pains on top of my head, with clear mri??
Sending 
to all of you experiencing the same!
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Hello i have been having headaches since 13 at first that was it besides some other things here and there till about 7 years ago it was neck issues first with headaches all the time also tmj issues i told my primary care physician all the time how often they were never listened to me then my hands started up and they decided to do emg noticed carpal tunnel in right wrist and left wrist and cubital tunnel in right elbow so surgery was done on right side in 2022 and left side in 2023 well now in 2024 its taken another turn breathing issues swallowing issues they said acid reflux then it was ear issues where the left one always feels full all the time so ent and right and left have ringing well i have some hearing loss now its also unbelivable neck pain upper back pain lower back pain hip pain shoulder pain pain is back again in both arms and hands so they want another emg done and then they seen i have no reflex to my ankles so emg of both legs had mri of brain done and on the report says chiari malformation 1 5mm then they did a cervical spine mri again same thing but neurologist hasnt mentioned it once only mentions what he found about how i may have a stroke soon if i dont change somethings and get on some medicine i have asked about it 3 times but its like i have been blown off is it chiari or not all i want to know from him and what we are going to do to help me get to felling at least somewhat normal again been out of work for 5 months the pain has been like i have never felt nefore
Hey Dawn,
Welcome to Ben’s Friends. I’m Merl, a member of the modsupport team on our network. I don’t have chiari, but a differing neuro diagnosis with similar symptoms. I too have been symptomatic since I was a child.
I’ve had LOTS of experience with multiple symptoms, seeing multiple Dr’s, multiple specialists obtaining multiple diagnosis and every one of them being minimised or dismissed all listed as unrelated or insignificant in themselves but, when they’re all added together they show a BIGGER picture. But nobody added it all together. For me, it wasn’t until the medicos could take a picture/a scan and see, then they started reassessing. But prior, the medicos minimised it all, my symptoms were just some figment of my imagination.
You say that the report states ‘chiari malformation 1 5mm’. Is that 15 or 1 point 5 (1.5mm)?
Some neuros tend to go soley by the length of the tonsil. Some will even dismiss your symptoms as unrelated due to this measurement. With some specialists, it’s not considered chiari until the tonsil is at least 5mm past the Foramen of Magnum minimum. The cerebellum ‘may’ have descended somewhat and show characteristics of chiari, but if it’s less than 5mm below then technically, it’s often dismissed.
Now, just because it’s less than 5mm does NOT mean you can’t be symptomatic with a smaller tonsil. If you read some of our other members stories you’ll find that this is not the case. There are examples of people with much larger tonsils having very minimal symptoms and people with a minimal tonsil but no end of symptoms.
If you are concerned about your medical teams view, then I’d suggest trying to obtain a 2nd opinion. Because the neuro community is so small, trying to obtain a truly independent opinion can sometimes be an issue with a Dr not wishing to override another’s view. I see that you are in Ohio. You may be able to access the Mayo Clinic, they did have a telehealth, online consult service available for neurology. I’m unsure if the service is still available but it may give you another avenue to investigate your options.
Hope it helps
Merl from the Modsupport Team
Sorry i didnt mean to put the one just the 5mm below
the foramen magnum and on the results said it was classified as a chiara malformation type 1 sorry thats waht the 1 was for
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Thanks for giving me some clarity 
As I say “Some surgeon’s…” can be a little disconnected from our reality. And try to minimise our concerns. I needed answers, but my concerns were all minimised. And that annoyed me. Initially, I was told wait’n’watch by a surgeon. I was a damn mess already, waiting wasnt going to help. So, I got a 2nd, a 3rd and a 4th opinion. I wanted to know what my options were. I took (what seemed) the easiest option, craniotomy.
What was supposed to be ‘easiest option’ has turned into a rollercoaster of multiple scans and neurosurgeries over many years and it still hasn’t resolved or ‘fixed’ my issues. If the surgeon had seen yours as an issue of prominence, they should have informed you. But then some won’t inform to see if there’s any progression. Either way is not nice, we end up often questioning ourselves.
Merl from the Modsupport Team
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Its not i feel like im on a roller-coaster my self i have an appointment on the 10th maybe i might get further i talked to my primary care privoder which also seen my mri and results and she automatically wants me to see about getting help for my chiari symptoms that was the first thing she talked about on my appointment so atleast i know someone is trying to help i just hope my neurologist will do the same
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Hey @dawn2687
I was trying to explain my own journey by way of that rollercoaster. Some people (me included) think surgery would resolve their issues, but for me it did everything but resolve. In fact, it set off a cascade of neuro symptoms. So far I’ve required 6 neurosurgeries (and narrowly avoided No.7 a few months back) and some days my symptoms can be nasty bad. Each surgery has ‘managed’ the issue it was to deal with, but the after effects of each have compounded each other and some days overwhelm me.
It’s a good thing that your PCP is following it up. I too went through a process of elimination of other treatments, medications and alternative therapies and I’d highly recommend it. If there is any treatment option other than neurosurgery, try that first.
Let’s hope your pcp (and neurologist) have some ideas that may assist.
Merl from the Modsupport Team
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I am so sorry thats a lot to go through i hope it gets better but all i have been reading is that it doesnt and it just gets worse lots of prayers to you again i am so sorry i have just found out i have this condition and who knows what else that keep running more test so far i have chiari and lordosis in my neck and i go in for my first appointment with a thyroid doctor for something found on an ultrasound
Thanks.
I ‘try’ to look at it all like this : Could things be better? Ohh most definitely. But then by the same accord, could things be worse? And the answer is yes. Many years ago I used to teach people with disabilities and in that role I worked with some of those ‘Worst case scenarios’ and I can look back and (selfishly) think “Well, at least I’m not in their position…” and I know I so easily could be. This has helped give me some self-perspective. I can easily fall into that hole of what I call the ‘Poor me’s’, but when I see myself headed there, I give myself a (metaphoric) kick in the pants. I can still walk, talk and wipe my own backside. Some people can’t, so what have I go to complain about? We all have our ‘Load’ in life and this is mine.
chiari, lordosis in the neck and thyroid, it all involves the head/neck/back. The question will be which one is primary? I hope the endocrinologist/thyroid Dr has some ideas for you.
Merl