Chiari Online Support Group

An Upbeat Post 8 years after surgery

Good outcomes are possible.

Eight years out, I am active (I swim five days a week), healthy, and essentially symptom free. I feel very fortunate, and drop in every few years to report back to the community.

When things go wrong, questions pop up, and we all turn to one another for advice and support. Those of us with good outcomes drift away from sites like this one into our lives. The sheer quantity of posts with questions on how to deal with problems creates the impression that bad outcomes are more prevalent. So this is my every-so-often check in to report that all is well.

My story.

In the spring of 2012, my left arm very suddenly became a sort of lifeless blob attached to my shoulder (during a swim workout, no less). The symptoms passed within hours, but it was frightening. I had a flurry of appointments, starting with an orthopedic surgeon who detected weakness on the left side of the body and ordered an MRI to see if I had a pinched nerve. Instead, he saw a slender syrinx and immediately referred me to neurosurgery.

Over the course of the spring, I interviewed three different surgeons, and eventually had a test to determine the functionality of my peripheral nervous system. The doctor discovered that while my nerve response times were just below the normal range, my left side was significantly impacted, far worse than my right side. He informed me that the syrinx had probably been degrading the nerve tissue for AT LEAST ten years. That made the decision to have surgery easy for me. I didn’t want any further damage to my body.

Between the time I decided to have surgery and my July surgery date, my symptoms worsened to include bouts of dizziness and some pretty severe cramping in my legs. I had to get friends to drive my kids on bad days. If I had to sit for extended periods of time, I had to sit on ice packs to prevent pain. I never experienced true Chiari headaches, for which I am grateful. (But knowing of the existence of positional headaches and what they indicated was a Godsend, because it helped us identify a cyst in the brain of our son, then fifteen, and get him proper surgical intervention, which permanently resolved his issues.)

Surgery was tough, and recovery took time, but I made a full recovery. I no longer remember how long it took, but I think I was almost back to normal six months out, and certainly by the following summer, I was truly just fine.

I can’t give advice on how to deal with post-op stuff anymore, because it was too long ago.

I can give the following advice for easing back into activity: TAKE IT SLOW! At first, I tried to wean myself from pain meds rather quickly, and would then cycle back into greater post-op pain. So I learned to stay at a given activity level for about three days before even considering a lower dose of pain meds. Similarly, when I did start to gradually exercise again, I started with a very low level of activity (three days a week, twenty minutes of gentle swimming at a time). I spent at least two weeks at an activity level before adding more time in the pool. For me, upping my time and distance by about 30% worked well. It was a large enough change that I could tell fatigue was due to exercise, not just the difference between a good day in the pool and a bad day. I would stay at the new level at least two weeks, until I knew my body was tolerating it well, and only then would I add more.

Finally, a small but interesting detail. I wear a swim cap because I have very long hair. When I first returned to the pool, I wore my cap normally, so it settled directly on my soft spot. It only takes about twenty minutes (to this day) for the pressure of a swim cap to recreate that old Chiari dizziness. So I now make a high bun and use it as a hook to hold my cap high above that part of my skull. But for anyone who has an less-than-well-informed doctor express skepticism about the Chiari dizziness, I can tell you that at least for me, impeding that flow of CSF recreates the symptoms every single time. So tell them it’s really happening, and when you get back in the pool, wear your cap way up high.

I wish everyone the very best.

Debbie

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Having a positive story is so important, especially for those of us are in the throngs of finding doctors, getting test results and trying to figure out how to live with this diagnosis. Thank you so much for posting your success story. I have not found many to keep me encouraged.

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Thank you so much! It is nice to know things may return to normal after the whirlwind of surgery.

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It is great hearing your story. I loved the bit about increasing your exercise/activity levels gradually. It remains so true for folks post-surgery. SLOWLY!

I found your swim cap detail interesting. Are there other things that you do that bring on the Chiari dizziness (how do you describe the Chiari dizziness?). You think that it is the CSF or do you have other theories? Just curious as I find these strange things interesting as they seem to point to anatomical reasons for symptoms.

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My theory on the dizziness is that it is ENTIRELY because of the impingement of CSF flow. For me, this plays out as a feeling of being not quite steady, of feeling slightly removed from the world around me (as one does with a bad fever), of feeling the way I’d imagine people feel just before they pass out or faint. It also feels like I can’t quite think clearly or quickly.

When I’m just walking around, I never experience these sensations. Yet twenty minutes of cramping the flow of the CSF, and there I am, experiencing all these things. Nothing else brings this on for me.

Wishing you and everyone else well.

Debbie

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Good to know. Chiari bodies can be kooky. Thanks!