Chiari Malformation and Exercise

[tink71083]

I am a 25 year old female and I was diagnosed with chiari 1 in January of 2008. I had the decompression surgery in March. 4 weeks after the surgery I returned to work. Four days later I had a high fever and all the symptoms had returned. I ended up in the ER and after a week of spinal taps and antibiotics (ruling out menangitis) they found that I had a leak in the dura graft anf a pocket of fluid had collected in my head, causing the return of the symptoms. I had the second surgery to repair the leak in April and did not return to work until July. It is not the end of November and from being inactive for so long I am very out of shape. I cannot even make a flight of stairs without being winded. I started working out this past week. A little cardio and some crunches and weights. I started very slow and am being very careful of what positions I use and such. I worked our all last week. This past weekend I was extremely dizzy and had terrible headaches and muscle spazms in my neck. I haven't felt that bad since I still had the staples in my head. All of my symptoms never fully went away after surgery. i still have the leg pains pretty severely and I still get headaches and dizzy spells. But it is much much better than it was before. Will I ever be able to exercise symptom free?

[tmk83]

Hi, I am also 25 and have a chiari 1.  I had my operation in June 07, about a month after I was rushed to hospital in severe pain, they ended up draining fluid in the emergency room because it was putting pressure on my brain, I stayed in hospital for a few days with the though that I would need a second surgery to repair a hole in my graph however the fluid didn't build up again over those days in hospital so my surgeon left it.  Even now can't even go for a walk let alone a run etc for exercise without getting a headache afterwards which makes me need to lie down.  The only symptom I had before the surgery was really bad headaches, I had no numbing or tingling!  I thought the surgery would help - it has reduced some day to day symptoms but the lifting, moving and exercising headaches are just as bad as they used to be.  All I want to be able to do is get up and go for a run before work in the mornings! I have been back to see my surgeon and had another MRI - he said flow is reduced at the back but flow is fine at the front so everything should be good!  He reckons the reduced flow wouldn't cause me problems - so why am I still having them?  He has now sent me back to a neurosurgeon for other possible causes - whats the point if the symptoms are the same as before the surgery?  Why look for another cause?

[Shane99]

Lor124,

Yeah, right now (especially with Christmas) my money's tight, but hopefully I'll be able to get one in the next month or so.



tmk83,

Well, the problem is; sometimes the surgery just doesn't help. There is no cure for Chiari, the surgery only relieves the symptoms. It sounds like it maybe only helped you a little. Not trying to be negative or scare you, but you need to understand that it's possible that you'll never be as active as you were a few years ago. Chiari is a neurological condition. Even Chiari 1 can have adverse affects on the nervous system - way down into your spine.

You said that you had another MRI and it showed, ". . . flow is reduced at the back but flow is fine at the front so everything should be good!" I'm not sure what you mean. The front and back of what?

Also, who ordered and looked at the MRI? You said your surgeon, but then later you say he sent you to see your surgeon. Do you have more than one surgeon?

Often if nothing looks wrong on a follow up MRI, they have to start over and see if it could be something else. They're not ignoring the Chiari, they're just double checking. You could have other issues with your spine that are causing headaches.

[selmaS]

I also wanted to add to what Shane said, is ur NS a chiari specialist?

Ur flow report is confusing to me as well.....if u have another issue going on is unclear.

I hope u continue to post here, it's a great place for info and support!

Good luck
Godspeed
"selma"

[tmk83]

Thank you for the return comments - what I should have said is that my surgeon has sent me to see a neurologist (the neurologist that diagnosed me has since retired).

My surgeon is a Professor and apparently one of the best in the field but I am unsure whether he is a Chiari specialist as such!  With the flow part - the surgeon said the flow at the back of the cerebellum is slightly reduced.

Does anyone know anything about "electrocautery to shrink the cerebellar tonsils.  This surgical technique involves destroying tissue with high-frequency electrical currents." or "a shunt system that drains excess fluid and relieves pressure inside the head" do either of these help?  My surgeon honestly expected me to respond well to the surgery, better than I have anyway.

[redkim]

I spoke to someone who during her surgery has a part of your tonsil "burned" to help it shrink.  I asked her if she has an side effects from it and she said that she has no concept of time.  She said that it could be Tuesday and someone will say let's do X on Saturday and she would have no idea when Saturday came and went.  She said she keeps several calendars around the house, car, work, etc to help keep track...

But your situation could be different...

[tmk83]

I am just wondering is everyone able to lead a normal life?
Work full time?  Do everything you want to?

I am sitting at work and my head is so sore - I just wish I could lay down on the floor.
I've also been to dinners and had to leave early or go outside to lay down in my car.  I understand that I may get headaches after exercise but I thought the surgery would have at least helped with every day life.

I have a specialist appointment tomorrow - I have my fingers crossed!