Chiari Online Support Group

Wondering about walking

I recently had surgery for decompression and that didn’t work so I had a shunt placed inside I still don’t have balance and need lot’s of support walking. My neurosurgeon told me the fluid harmed my sphinx and needs time to heal. I am 34 years old, will I get healed? What are some recommendations to heal myself faster?

Is it your balance that is not functioning well with walking or motor control issues? eyesight? Just wondering before I say anything…

It is just my balance that impedes me from walking and I am weak from my left side but everything else is fine

Dear Nayeli,

I can agree with gabby… with Chiaris, there are several ways you can lose your balance! It took me at least 2 years after my decompression surgery before I was able to walk without a tumble (needed a cane all that time!). I spent all that time trying to figure out WHY… and the answers varied every time.

For one, I still deal with plummeting blood pressure. Wow. A blood pressure drop can make you dizzy and fall real fast. A tilt-table test showed me that I had excessively low blood pressure because my brain stem got squished from Chiaris and doesn’t want to work properly. The brain stem is in charge of everything ‘automatic’ in your central nervous system - which includes blood pressure/ cardiovascular.

However, I also got my cerebellum squished from Chiaris as well. And, the cerebellum is what’s in charge of muscle coordination. Five years later, I still have days where I lose all muscle control and get massively clumsy. I call it the “clumsy dumsies.” Tying a shoe or trying to do a button gets over-the-top frustrating! Forget walking! I bumble around like a drunk.

Thing is, I kept pushing myself to walk everyday. I didn’t know if I could retrain my CNS to do exercise, but I gave it a try.

The irony of it is - now I am a nationally ranked race walker! (at the Masters level, that is). I have good, functional days in between my ‘clumsy dumsy’ days - and on those good days, I have been able to push my walking to such speeds, I am one of the fastest race walkers in the nation! Who ever knew! I am still astounded - and outrageously grateful to God - for allowing me to walk, and walk fast. I was not ever expecting to walk very much ever again. But, it did take years before I was able to walk like this. Like - 5 years! And, I still have permanent brain stem damage that regularly comes back and disables me. It’s so odd. I tell you. Chiaris is the most mysterious of things. Affects everyone different - so your story will be a unique one.

-BethR

Thank you so much Beth. I was starting to loose hope and get depressed. I am glad to hear that their is a light at this end of the tunnel. I also stopped trying like I don’t want to do my exercises or practice walking because I felt it wasn’t helping and I felt it didn’t matter anymore. I was a teacher before this and currently a mother of 3 children 10 year old, 4 yr old and 5 year old. So this worried me so much. I will definitely continue to keep trying and practicing and not give up.

Dear Nayeli,

Wow. I was a teacher once myself as well! That is, until Chiari’s got so bad, I was nearly totally paralyzed and brain dead by 2008. I was forced onto the school district’s disability payroll until I ‘got well.’ ‘Getting well’ ended up not happening while I was on contract with that district. In fact, I’ve since lost my teaching credentials - couldn’t keep up with requirements.

With Chiaris, I’ve found that anything involving long term energy and adreneline - like teaching - simply is not doable anymore - even post decompression surgery. I have tried to get regular employment - but the slightest stress involving deadlines, keeping to someone else’s schedule, high-energy tasks, etc - will bring all my Chiari symptoms back with vengeance - including a great deal of pain. Fortunately, I was able to find a job that allows me to work whenever I feel well enough to work - and lets me ‘crash’ at home when Chiari symptoms come back. It’s very low stress. I love it! Even post decompression Chiaris, I’ve not healed 100% - but I am beyond grateful that I at least healed 75%! That’s 75% functionality I never had prior to the surgery!

You know yourself better than anyone - you know your own stressors. In the ideal world, it would be best to avoid stress. But again, that’s in an ideal world! How many of us have access to that?!? :kissing_smiling_eyes:

I do hope that your 3 kiddos give you great happiness and tons of warm fuzzies. Other than that, I hope you have the energy to keep up with 3 energized children within your own home! :hushed: I do miss that part of teaching - the funnies that came with being around kids. I don’t have any of my own - so it can get real lonely around the holidays.

Hope you can maintain the motivation to not give up! (finding a friend to walk with helped me my first couple years post-surgery.)

-BethR