Needing advice

It’s been 8 years since my decompression surgery, I still suffer from severe headaches ( my family physician refers to them as migraines), i can’t work. I’m light sensitive and I can’t laugh to much because it causes severe pressure in my head and triggers" migraines".
The neurosurgeon told me years ago that i suffered trauma from the decompression surgery. Is anyone else expeiencing anything similar?

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Yes! I have read that 50% of patients are “cured” after surgery. The other 50% continue to experience symptoms or progressively get more and worse symptoms.

I had my surgery 17 years ago and at that time they thought the surgery fixed everyone. There was even less research on Chiari then. I have progressively gotten much worse. Very disappointed.

I had surgery in 2000, along with a c2/c3 fusion, I probably didn’t need. My pain is very bad, and has just recently become unbearable. I am seeing my original surgeon on Tues at John Hopkins, and pray he can do something to help me.

I truly feel for you, it is frustrating when you seem to get no resolve.
My decompression was in 11-12-09. I became active again and went back to college at age 53. As time went by, I had a bad episode where it was as if my body was short circuiting. My vitals went crazy, and I came close to losing consciousness. I had a similar episode only not as bad about 3 and a half years later.
They can do nothing for them I just have to find a way to avoid them. That is key because we sometimes have to be our own healers. I have found Chiropractic care is particularly beneficial; and don’t expect immediate results it takes perseverance. Cool packing the back of the head where it meets the neck also helps and stay away from anything that speeds up your system. Beware of over-the -counter medicines and also some multi-vitamins have high doses of nutrients that can cause vasal dilation that caused me irratation.If you are light sensitive look into dark tinted semi-hard contact lenses. Massage of the surgical area as well.

Hey lanny,
I’ve required a few neurosurgeries, my last in '13 and still today I have all of those same symptoms. I must say here : At least your Dr is saying you suffered trauma from the surgery. My initial surgeon wouldn’t acknowledge any such thing, in fact, he negated it all as my own doing, like I choose to be in agony. It has only been within the past 5yrs that the medicos have even acknowledged my ongoing issues.

The definition between headaches vs migraines is one you’ll never get an answer to. I know because I’ve tried to get that answer too. Some Dr’s are of the opinion that migraines are in issue with blood flow, some will argue it’s a neural electrical signalling issue. Where as some medicos believe headaches are an issue with muscle tension. I have been trialled on all sorts of pharma concoctions from heart meds to epilepsy meds to psych meds and everything in between, but none of them have been my ‘key’. I think the closest I came to an answer, (if you could call it that) came from an ophthalmologist “Well, you’ve had brain surgery. What did you expect???” What I didn’t expect was THIS, but here we are.

It can be a REAL battle some days.

Merl from the Modsupport Team

Dear Lanny,
I completely relate. I did not have headaches until after my decompression. I had balance and “seasick” issues. About 2 years after my surgery, I started getting migraines. They became chronic. I will go to a chiropractor soon who specializes in cervical issues. I also went to craniosacral therapy last week which seemed to help, though if you have it, you may wonder what good it is. It is very light touch and nothing like the massage therapy I usually use. We all suffer trauma during decompression. All the muscles are cut through, the skull is cut away, etc. There is no surprise in the muscles and nerves being hyperactive afterwards. You have to advocate for yourself. No one knows what it is like to have a headache for months or years except your friends here. Find another doctor who is a ACM or headache specialist who will work with you.

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