[gitte]

Hellow
My daughter had a 9 cm Tarlov cyst removed in 2009 but is stille experiencing severe headache. The neurosurgeon says everything looks okay after the surgery, but she suffers from headache all the time. The headache is getting worse after physical activities (also when she's only walking) and she finds relief when she's horisontal.
The doctors will not acknowledge her symptoms. Is it normal to feel such a headache?. She is also having back pain in the lumbal area
The doctors says shes having chronic pain, but the cyst removal isn't the cause. She is living a disabled life. We are frustrated. We can't help her.
We have send her MRscans to dr. Warnke in German to have a second opinion, but we would like to hear from you, if her symptoms are normal?
Lot's of greetings.
Gitte and Amanda
from Denmark

[Rrae]

Welcome to NT!
You've found a wonderful place for support and understanding.
There is also some good information at the top of most forums called the "Sticky" section.

I'm so sorry for what your daughter is having to go through.
She is so young to have to be dealing with this.

Here is the Tarlov Cyst forum - you might get some feedback regarding the lingering headache...
http://neurotalk.psychcentral.com/fo...aysprune=&f=73

Or, check out the Headache forum
http://neurotalk.psychcentral.com/fo...sprune=-1&f=32

The Spinal forum could be very helpful as well...
http://neurotalk.psychcentral.com/fo...sprune=-1&f=22

I hope you will get some answers soon so that your daughter can have a better quality of life....

Caring,
Rae

[mrsD]

Sometimes a cerebrospinal fluid leak can happen when Tarlov
cysts are removed. This is supposed to correct itself, but maybe in your daughter's case this is not happening.

A cardinal sign of a CSF leak is headache, and relief in the prone position.

If you Google "Tarlov cyst and CSF leak" you can find several links that explain this.

We have a CSF forum here:
http://neurotalk.psychcentral.com/forum78.html

And this is our Tarlov cyst forum..
http://neurotalk.psychcentral.com/forum73.html

It is not very busy, but you might find some information there.
Keep protesting at the doctors'. Sometimes you just have to be insistent, or get another opinion.

Good luck to you.

[gitte]

Thanks for your advice and link to different forumt. We appreciate this.

My daughter experienced headache before surgery, and the surgery helped after a while. The headache returnet and is now persistant. We have faught a lot with the doctors, saying everything is not okay. Every Mr scan looks okay, says the doctors. There isn't a CSF leak, and not a new cyst. What do we do? How will a CSF leak been seen? On MR? We think it's a spine headache, but we have no evidence. They think she is a chronic migrain patient (very odd, no medication has an effect).
We are SO frustrated :-(
Lot's of greetings

Amanda and Gitte

[mrsD]

I think it would be a good idea to ask your questions at the links I gave you, and perhaps also at our headache forum.

There may be someone who sees it there and recognizes something.

This forum is not read by everyone. Some people stay on their own forums and not everyone reads this Introductions forum.

Headache:
http://neurotalk.psychcentral.com/forum32.html

Be persistent with the doctors. Sometimes they can be very narrowminded IMO.

[gitte]

Thank you. We might try that.
Lots of greetings
Gitte