Chiari Online Support Group

Surgery 1-24-19


Here goes nothing! I sure hope I’m making the right decision. I think that’s the biggest source of my anxiety right now.

I have to show up at the hospital bright and early at 630, surgery is at 830. I sure hope this works, because I’ve been progressively getting worse and worse these past few months.


I hope your surgery went well and that you are already recovering!

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Thanks for checking on me! I haven’t been online for a while. It went very well! My surgeon did a very complete surgery as he says (laminectomy, dura graft, trimmed the tonsils, etc.). When I woke up, the first thing I noticed is that I can take a deeper breath than I ever could before. It was an unexpected bonus!

I thought the pain in my hands and feet was peripheral neuropathy from last year’s chemo…it’s gone. I got out of bed the next day and my feet didn’t feel like they were going to break in two.

The pain between my shoulder blades is gone as well as the continual pressure in my head.

I did get my stitches out two days ago and, I am fighting a bit of meningitis but I am on antibiotics and anti nausea meds for the next ten days. But it has gone well with only a few bumps in the road. I do have some occipital nerve pain, but my surgeon is optimistic that it will fade with time.

So far I’m excited to possibly get my life back and climb some more mountains and hike more trails!


Hey Sparkles,
FANTASTIC NEWS!!! These are the stories we LOVE to hear. Onward and upward.

Merl from the Moderator Support Team

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Reading your response after your surgery is SO encouraging. My symptoms have become so bad I’m almost housebound. Signed off long term sick from work which is a big deal for me. I’ve worked for over 40 years and never been off for longer than a couple of weeks. I’ve decided to have the surgery if the neurologist agrees. I was worried about the outcome but your post has really helped me see it in a more positive way. So thank you and I wish you all the very best for continued improvement in health and pain.


Hi guys,

I am finally able to take some time and write this. I wanted to give an update because the road got much rougher, but there are bright spots now too.

The night after my last reply, I woke up to a CSF leak…wet pillow, incision leaking slightly at the top…that sort of thing. My surgeon had the ER put a simple stitch in to reinforce it and we waited to see if it would stop. It did not. The leak continued to worsen over the next few weeks. Surgical glue also began to emerge from the area as chunks of clear gel that once exposed to air shrank and hardened up (as they should have done in my head…oh well). My doctor finally said it was revision time and I was scheduled for surgery 2 days later.

The revision surgery showed that the graft had developed a tiny hole and had been leaking. A new, slightly larger graft was glued to the old and stitched around it. I was on my back in ICU for 6 days on Diamox and with a lumbar drain constantly draining to make sure no excess pressure was placed on the grafts until they sealed well. I was also not allowed to raise my head higher than 20 degrees (mashed potatoes and jello were my best buds!).

After all that, it has now been over a month and I am happy to say I still feel like it was worth it! My fiancee and I went to see a movie recently and I was able to watch it without getting woozy, dizzy or sick! I can pick up my 2 year old daughter again! I am still not 100%, but my surgeon has told me to give it a year as my whole body effectively has to recalibrate to all the new signals getting through at different rates and such.

I wanted to write this to make sure everyone had the true data. The surgery was not a cakewalk by any means, but for me it has worked out and been worth it. I am excited to see what improves/changes over time.


Oh Sparkles, that is no picnic! But the rough patch you worked your way through was temporary. Now let’s hope the benefits of the surgery last a good long time!

That’s the beauty of Ben’s Friends: we’re here to support each other through good and not-so-good. Thanks for sharing your your ups, your downs and your good news.

Seenie from ModSupport

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