Hello, I'm 22 years of age and I have Arnold chiari malformation, hydrocephalas, syrongeymelia, 1 programmable shunt in the head and 4 in the spine and lungs, it's a long story but iv had 13 operations, major ones due to my severe ACM and syrongeymelia. I really want to start jogging and getting fit but every time I start jogging I have severe pains in back of the the head, is there any medical reason why I can't? I know I have a lot of conditions but I need answers on whether I can jog or exercise, I have a run race coming up... I have no feeling in my body and weak on lef side. My last major operation was 11 month ago, and ifears diagnosed with ACM and syrongeymelia in aug 2009 and god hydrocephalas due to this... i still get pains and vertigo and poor balance. Running used to be a hobby of mine, so itd be nice if anyone could give me some advice on exercise or anything, even if i have to run this race differently xxxx
I am sure by hydrocephalous u mean u developed pseudotumor cerebri**...excess CSF fluid....it is possible to experience this post op of Chiari surgery.
With PTC** u get pressure in ur head from the excess fluid, and when u strain urself or get ur heart rate up it can cause more issues...jogging or running is 2 fold in that u have the slapping of the pavement and the heart-rate that can add to ur issues.....
Running and jogging at that point in time with all ur issues is premature u mayb able to fast walk....and even that u may end up with some pressure.
Thank you for your help, yes it is csf fluid, I got hydrocephalus because the perdermal patch they put inside your brain when they are doing the forem magnum decompression had dissentigrated in my brain.. The surgeons said that they have never heard of anything like this and they asked the surgeons in America if they have heard of the dermal patch disentigrating and they don't know either. Im sure someone knows in the world..
The reason why I've had so many operations was because both my syrinxes keep getting larger even with the shunt.. But now the shunts which they have put in my body are now working :) the surgeons still don't know why my syrinxes keep getting bigger even with surgery.. If you know any idea as to why this kept happening it would be appreciated.. But if not there's no worries
Thank you so much for you help, you have really helped me selmas. Is PTC.... Syringeymlia???? Xxxx
Oh ur story is really heavy,but i admire u for being so strong.i get ha from running because my neck moves and i think it is iritating my ocipital nerves.i loved running and am not longer able to do it...too much pressure,too much pain,off balance...i hope u find a way to go ahead with ur hobby
Do u know what the dura patch was made of? I have heard of this happening to others, and it seems to happen more frequently with those with EDS and those that develop PTC post op.
Did they replace the patch with ur pericardium?
No PTC is more like hydrocephalus...syringomyelia can result of too much fluid getting obstructed, a sack or cyst like cavity fills with the fluid and can grow larger and press on nerves. U have a syrinx, the condition of having them is called syringomyelia.
Did they try u on DIAMOX as well to help with the excess fluid?
What's diamox????? And yes they did :) It's all complicated, I have created my own ACM logo for a new website based on ACM I'm creating it would be great if you could be an administrator too? So you can help others like you do on here! you do a great job. It would be great if you could let me know what you think to the logo, you and anyone else can use it :)
Diamox is a med used to help reduce fluids....and is used for people with PTC to help with the pressure....many times b4 a shunt is tried....but since u r still having issues I wonder if they use the meds in addition.
Can u ask ur doctors about the running and if u should have limits? It is great that u actually feel like running with PTC and two syrinx. I have PTC too, mixed with a csf leak that is sporadic. I' can't even imagine running for me. I.d certainly be curious to know more about all of these shunts and surgeries that uv had. Have a great day!
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