Arnold-Chiari... is it all in my head?

General
1

I hope all is well with everyone and all enjoyed the holiday weekend!

I have only been a member for 6 months, give or take, and have done more reading than writing. So, I'll give you a quick background - I am currently in my mid 30's, married with 3 kids (all 5 and under). I originally found out about my diagnosis of Arnold Chiari in 1999 and subsequently had decompression surgery that November. And for a little longer than a decade after I felt relatively "normal" with minimal symptoms, etc. I am very thankful for that time! However, last spring things started to go haywire - headaches in full force all the time, numbness & tingling, balance issues, brain fog, memory loss, etc. At this time, I had moved hundreds of miles from where I lived in 1999, so I had to start the relentless search for a doctor to acknowledge I have a real disease and that I'm not in need of mental health medication (no offense intended, I just feel this is a safe place to say things like this as I'm sure most have had to deal with misdiagnosis and/or being treated as if we are making things up). Enough with the background.

After 6-8 months of the above symptoms intensifying and the doctor search, I ended up back in surgery (this time to cauterize the cerebellar tonsils). The surgery was 6 months ago and, while I understand it is not a cure, I feel that the symptoms should be going away? Things aren't worse than before the surgery, but in the whole scheme of things, they aren't altogether much better.

So...I ask - with a smile on my face with the intended pun - is it all in my head? Do I feel tired, have the pain & symptoms, because I have convinced myself that I should feel this way...or is it that no matter what I have attempted in the medical arena, things still progress.

I think I know the answer to the above question(s)...but would like to hear from others so that 1.) I don't feel like I am losing my mind and 2.) so that I don't feel alone in this struggle (not that I want others to feel like me).

Thanks for "listening"!

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Thanks! Yes I had a Cine MRI done and there was a lot of scar tissue removed during the revision surgery.

Emmaline said:

You are not losing your mind! Peeps have all kinds of symptoms before and after surgery. It is a treatment, not a cure. It depends on what damage was done prior to surgery for one. and if any scar tissue builds up after.

Before your revision surgery did you have a Cine MRI, was any scar tissue removed? We have to live our best lives, that may be doing some alternative things, Supplements, an anti inflammatory diet, homeopathy, and acupuncture to name a few. Taking responsibility for our heath is key dealing with chronic illness.

I hope you can fins something that lets you feel well!