Help. Am I crazy?

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.

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.

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

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.

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 :heart::heart::heart: to all of you experiencing the same!