Hello, My name is Melanie, I have Chiari , I was born with this. It took 40 Years to find it.. All these years on one would listen to me. They would say you are off bal because you need to lose weight all your headaches are cause my your family history. I had MRI done all the time. But finely someone listen. 2013 I found out and 3 mo. later I had surgery. It been almost 3 years and now I wanted to get into working out. But in the past year I found that NO weights NO jumping jacks. Only thing I can do is walk... Has anyone have this same issues?
Today I couldn't look up with out feeling sick, just like before I found out what I had.
Most neurosurgeons will have their own routines, partly based on what they did intra-operatively and partly based on experience.
There is little(no) science on symptom or anatomical recurrence after surgery based on activity.
Also, take the neurosurgeons' recommendations in light of their biases. For instance, I have 7 kids and my goal for surgical treatment is to allow the patient to lead a normal life(as though they were one of my kids). Therefore, I have patients with Chiaris who do gymnastics, play football, etc. I give guidance but don't forbid any specific activity as the science just isn't there.
In general, it is wise to avoid any activities with significant risk of neck flexion/extension or any Valsalva maneuver(anything that raises intracranial pressure, e.g. heavy lifting, horseback/ATV/roller coaster riding, playing a wind instrument, holding an extended singing note, etc).
That being said, each patient is an individual and in general, in 20 years of experience, I have never seen permanent damage in the post-operative setting with any specific activity(but I have certainly seen a lot of temporary symptoms). I'm specifically addressing after you have healed(at least 3-6 months post-operatively). Clearly there are greater precautions in the immediate(first several months) post-operative period.
So, base the decision on activity on your tolerance and your neurosurgeon's recommendations. If you tolerate walking, try increasing your speed. If you tolerate light weights(usually <10#), try increasing your reps. Conversely, if you find an activity that makes your symptoms worse, stop doing it(whatever it is).
In general, try to stay with activities that keep your posture in alignment. For instance, even though swimming is very low impact, because the neck is kept extended, many patients with Chiaris find swimming problematic. Similarly, recumbent bikes(sitting upright) seem to be better tolerated than traditional bikes(again, because of neck extension).
Those are some general thoughts and the logic behind my recommendations.
Hope those thoughts helped!
Thank you for taking your time to respond. Yes it does help…!
Hey, I haven't had surgery. My worst symptoms are terrible fatigue; back of the head very sensitive to things like someone touching me, feeling vibrations when sitting on couch, chair; mind not working; getting dizzy when I move. And, ofcurse, others. My symptoms got as bad as they are now in summer and I haven't worked out since. I tried very light weight lifting, but when I got ~7 reps in, it got harder to breathe and vision got worse(everything slowly goes black), so I stoppet that. Since my symptoms getting this bad bike riding has been the easiest, but only on very good roads without any bumps or holes(is it the right word?). If the road was bad, I instantly got terrible headache. Bike riding still was really hard and most of the time I felt like I could soon pass out, but still that felt better than not moving at all.
Just walking helped me tremendously. Drink 90% water and just walk 45 minutes to 1 hour and 30 minutes everyday. Yea balance issues make running or weights unsafe for me. Walking outside in the sunshine helps with feeling low/depression also.