What exercise can I do????

[dannichiari80]

Hello, I was diagnosed with chiari and syrongymalia (2 syrinxes) in August 2009 and had the decompression straight away as it was so severe, but then I got worse and my dura patch got infected which gave me meningitis, so was on a drip of anti biotics for 5 weeks then they decided to repeat the decompression to remove the dura patch and replace it with a part of my brain, I can't remember what part now, but then I got hydrocephalus so then they inserrted an vp shunt, was back home for 5 months but then I got severe leg pain, and was rushed back into hosp and found out my bottom syrinx had got larger so they had to do more surgery and decompress the spine and insert a shunt in the syrinx, but then my top syrinx got larger and they had to do more surgery and repeat the operation I had before and put a shunt in the top syrinx, but then things got worse and my head shunt got blocked so they did more surgery and had to put a programmable shunt in. But...... Then my top syrinx got bigger because the shunt wasn't working, but it wasn't blocked?? So they had to decompress the spine and put a shunt in to the syrinx to the lung, but then my bottom syrinx got bigger because that shunt wasn't working and had to decompress spine and put a new shunt in.....so then this kept happening, I then got worse and all my organs were shutting down and my heart stopped, luckily they bought me back to life, I had a lot of swelling due to loads of operationsm I woke up in intensive care and I was on high steroids.. But..... It got worse and my head shunt got blocked, so guess what? They had to do more surgery.... And put a new shunt in, but then woo I finally went for home, during all the operations I wAs in and out within 2-3 months, but 1 year later but top syrinx got larger and they had to decompress the whole spine and put another shunt in the other lung from syrinx...

1 year later and I Feel fine :D miracle ay? Iv had 12 operations (major) and few minor...... My question is, I'm very out of shape and I desperately need to get exercising and up the gym. What exercise programme would you recommend I should do? And if I should exercise? I still get painful legs and painful neck (due to syrinx)

I'd like to know your chiari experience :)

[selmaS]

  Hi...EDS- Ehlers- Danlos Syndrome is a connective tissue disorder that many with chiari can get or have....it can cause us to reject the dura patch if it is made from foreign matter....I also had a patch made from my own pericardium, skin from my scalp.....this lessens the infection and rejection issues.

Many with EDS also tend to develop PTC or ICP and need a shunt, and issues with shunts can happen unfortunately....ur story sounds like one of our members.

Did u find the thread with the exercises ?

[Viva001]

I'm just 2 wk post op, so my walking is pretty minimal right now.  I had to sit down right where I was twice, due to dizziness, so I'm being very cautious.  If I go outside, I take the phone w/me.

Pain was never the dominant symptom for me; it was the dysautonomia & the cognitive deficits, as well as the doz or so minor symptoms that added up to an intolerable load.

I feel great now!  

A friend w/another debilitating condition has a video from the arthritis foundation for gentle exercises in bed.  There's also gentle yoga that you can do in a chair, as well as qigong from a chair.  If those are too boring, I would suggest the pool-- there are usually different levels of activity.  Even sick, I found the arthritis one too boring & too slow, plus it's cold when you aren't moving fast enough.

[dannichiari80]

I bet you are! :) I am happy I can walk also I just didn't know if it was just because I hadn't done it for a while, but it seems like most chiarians experience this and pain, but at least we are all here :)
What's your story?

Xxx

[dannichiari80]

What a sweet thing to say! Well tbh 4 operations is difficult in itself, what operations did you have? Well apart from the forum magnem? :) I will try these exercises, I like dancing so I do light dancing and it's fun too but I have to stop after a while. You sound like a very brave lady! Nice to meet you :)

Xxx

[dannichiari80]

The doctors weren't much help tbh, with giving tips on exercises but I guess it's different to everyone! What type of pain do you get? ACM for anyone is tough so you are brave too! Do you find walking distances hard? Because I didn't before I got diagnosed but when I had the zillion operations I found and finding it hard to walk long distances. How are you now????
Thank you for commenting!
Xxx

[dannichiari80]

Hello!
Thank you everyone, means a lot! Selmas; They didnt check me for that no what us ehlers danios? That sounds complicating. I hope it does help others, I would recommend the operation to anyone :) I do get pain though, my pain seems worse today though :/ (as I said in my question I just posted) do you have ACM? I will try this, thank you!

Xxx

[selmaS]

  Hi and welcome to the Chiari forum.

I would also suggest the exercises on the Wednesday thread, as it starts off slowly and u add new exercises as u r able to increase them one at a time.

A Dr is giving us these for those with limitations, so some r sitting, but not all and as u get thru the ones there, u can post what it is u need next and I will ask the Dr for other suggestions.

Thank u for sharing ur positive surgical experience as it does help those here contemplating  the surgery. And that it was not such a simple recovery but u have come into the light is just wonderful.

May I ask, did they check u for ehlers-danlos?

[irislita]

Woooow.what a story!i am happy u made it after all to feel better.cant give u much excercise tips...i am happy when i just can walk for a while

[linnielou232]

Thank you so much for sharing your experience and the positive outcome.  I had 4 surgeries all together.  I can't inmagine all you went through.  I am so happy to hear your doing better.  I started out slow also after all of the surgeries.  It really breaks your body down.  I would start out by doing Selmas excercises she post on here on Wed.  and do take things slow.  You have been through so much.  It will take time, but sounds like your a strong soul and you have the will for yourself to get stronger.  One day at a time my Chairian friend.  You are an inspiration.
Linda :)

[Viva001]

Omg, I'm glad that I got to read the miracle part at the end!  What does dr say?  I was told, after laminectomy, to stretch, then start walking in the pool, then on land, then some weight bearing exercises.  I never got past that because I still had symptoms from an undetected Chiari malformation which included exercise intolerance.
I'm sure everyone will tell you to go slow & be careful.
How brave you are!