Chiari Online Support Group

Symptoms still horrible

I was decompressed back in December of 2017, and I am still miserable with my symptoms. I definitely have EDS, POTS, Mast Cell, Scoliosis, Gastroperesis as well. I’m doing my best to get evaluated for CCI and CSF leak, but I’m having trouble finding a doctor within my insurance that’s willing to help me rule these things out (or in).

I struggle with daily symptoms of horrible nausea, acid reflux, dizziness, heart palpitations, head pressure, lightheadedness, fatigue, blurry vision, digestive issues, etc. pain is the least of my symptoms, but I will get occasional headaches or migraines. I haven’t noticed much of a change in symptoms since my decompression surgery, so it’s left me searching for answers. I recently went out to the POTs treatment center about a month ago, and haven’t found that of much help yet either. I’m going to try cutting out dairy and gluten to see if that will help with my digestive issues, but I’m just so overwhelmed and I’m feeling really helpless. I don’t know what to do. If any of you have any advice or recommendations, please comment. I’m desperate and could use some hope.

Hi there,
I’m sorry you’re having so many issues. I had decompression in 2013, and to be honest, I had those exact symptoms for about 5 years after my surgery. I’m just starting to feel better in the last year. I had daily migraines along with the acid reflux, heart palpitations, etc. I went from neurologist to neurologist. I finally went to a neurosurgeon who found that my decompression left me with too much blood flowing into my brain. He put me on blood pressure meds and i finally started the process of healing. Maybe check that?

You sound so much like my 18 yo son.
Chiari, EDS, POTS, PANS, CVID, gastroperisis, SIBO, h pylori, Lyme…on and on.
He went downhill after decompression 4.5 years ago.
He spent 2 years bed bound in a dark room.
He’s still up and down but so much better than he was.
This Jan we found out he’s had a CSF leak this entire time. They’re now saying his Chiari was ‘acquired’ from a leak and that he shouldn’t have had surgery.
He’s had 2 blood patches. Immediately takes away his headache, fixes vision issues, restores circulation to his hands. Fixed all pots issues.
The patches haven’t held but he’s still better than he was. We’re hoping for another patch.
Please look into CSF leak if you haven’t already.
Look up videos by dr Ian Carroll and POTS.

Also look at SBI protect powder for GI issues. It boosts immune system in your gut.

I actually was trying to get in to see Dr. Carroll. I have been trying to get evaluated for CSF leak for the last year but because of insurance issues, every neurologist and neurosurgeon has turned me away

How did they find he’s had a csf leak. Myelogram?

I’m SO glad to hear your finally finding relief. I’ve been sick for 3 years, I can’t imagine being sick for 5 :sob:

i will definitely look into blood pressure medication! Thank you

I’ve heard it’s so hard to get into dr C.

No he hasn’t had a CT mylogram. He was diagnosed based on symptoms and the brain herniation (Chiari). He had blind patches since the leak doesn’t show on MRIs

Symptoms - headache (not positional since he’s had it so long, vision issues (eye fatigue, trouble focusing, convergence insufficiency, floaters), pain between shoulder blades, all his pots symptoms, cold hands, dizziness, sweating.

And…he’s better now than he was a few years ago but he can only be up or out for maybe 2 hours before he goes downhill. He can make it thru a dr appt but then can barely make it home.

They did a patch to see if it would help. I think seeing how much it helped confirmed the diagnosis. Oddly it also helped his GI issues. He’s finally absorbing food and gaining weight.

Sorry, Sarahhd that your symptoms are still so bad… Do you have any good minutes?.. hours?.. that you never had before the surgery? My neurosurgeon said that CNS healing is not at all like muscle or bone healng - which is a gradual incline to the better. He told me CNS healing is 'like a roller coaster." He said I would still have the Chiari symptoms - but eventually one or two good hours will pop up - followed by plummeting back into The Awfulf Chiari symptoms for a couple days. Eventually, those good hours might… should… hopefully… increase, and The Awful decrease. That is exactly what happened to me. Seven years post-surgery, I am permanently stuck with three perfectly normal pain-free days - and every fourth day - ALL the Chiari symptoms return for 24 hours. (I am assuming the return of symptoms may be more like the Phantom Pains that vets feel when a limb is missing… The CNS is ‘remembering’ the damage, even though there is healing. I’m guessing about that.) But, it did take 2 years for me to eventually get to 3 good days! The first 6 months, it was more like two good hours every 3 days. Then, for another year, I had 2 good days, 2 ‘Chiari days.’ It was a slow process. So, I am wondering… do you get ANY good moments, yet?

1 Like