Originally Posted by semilesh

Hello all,
I know this is an old thread but since there has been some recent activity, I hope this is a good place to turn for answers.

My story begins like most, diagnosed on accident when the doctors couldn't find anything else wrong to explain away my symptoms. Then came the searching out a doctor who actually knew what he was talking about. All in all, I am lucky since I only struggled with it from diagnosis to surgery for two years. I know many people get bounced around a lot longer then that so I count my blessings.

My symptoms included chronic pain, fatigue, restlessness, headaches (the ones that would come with positional like bending over and migranes that were made worse with movement). Finally I was referred to a neurosurgeon and we decided not to do surgery because none of my symptoms were neurological. About 3 months later I started developing bladder issues that weren't normal, even for someone with Chiari. Instead of not being able to control when I went, I have issues being able to go at all. I sit down and sometimes it takes me 10 minutes of convincing to be able to void my bladder.

At this time I was sent to a urologist who determined my bladder issues were a result of my syrnix or Chiari and my NS and I decided surgery was the only option to stop the progression of this neurological symptom.

I had my decompression surgery on the 27th of january 2010. Afterward I developed horrible headaches that put any of my Chiari headahces to shame and it was determined it was due to a leak in spinal fluid (probably at the dura graft site). My doctor let me rest for almost a month hoping the leak would correct itself but it didn't. Life was misrable. I couldn't even go to a doctors appointment without spending the next few days in agonizing pain. It even landed me in the ER 3 times when nothing would help to stop the pain. (Usually in a CSF leak headache, if you lay down, it goes away. When you're up an about it undoes all the bodys' progress at stopping the leak and the longer you're up for, the longer it takes to get the headache under control. It's one of the main sign of a CSF leak and I only say this because I didn't know this and have ran into many people who with that information alone, have lead to their being diagnosed with a CSF leak).

I was readmitted into the hospital for a revision on my original surgery and they were unable to determine the source of the leak. My doctor went in and took out some of the stitches on the dura patch and put more "glue" around the site. Then he put in a lumbar drain to divert the CSF fluid and lower the flow to allow my body more time to heal. This was done on the 8th of march 2010. I know I am only 12 days post op but I am feeling better then I have in years!

My question out there is what are the life long limitations that occur from the decompression surgery. My doctors say for each person it's different which I agree with but he said that trial and error is the only way to know my personal limitations. This scares me because if I do something, the only way I'll know if its a limitation is if it makes things worse. I don't even want to attempt to do something if it's going to make things worse. What have any of you out there found that makes the symptoms return and/or worsen? I've been told to stay away from amusment park rides like roller coasters and things like sky diving but i've also been told something as simple as running has ruined all the progress some people have made. This is hard for me because I am in the military so I will no doubt have to try but if there is some advice I can get from people who have gone through this I would greatly appriciate it. Thank you so much in advance for your help. I wish you all the best of luck in each one of your "fight against Chiari."