Hi, hope everyone is feeling magical today? I just thought I'd drop in with a few questions:
How many of you have experienced thunderclap headaches after decompression surgery?
My understanding is that these headaches, usually triggered by laughing, singing, pooping, bending down and the like, are directly linked to chiari. In fact, I understand that they are one of the tell tale signs you have chiari in the first place, is this correct? If so, then why would someone who has had surgery and been given the all clear still get these specific headaches?
I have only had a couple since surgery. They are triggered by those things listed, at least for me. Most docs when I would tell them that is what is happening would look at me like I was crazy! But yes, as far as I have noticed, this does seem to be the case with many of us, eventhough most of us have different triggers that are worse than others....Good luck!
The headaches can be from two things...One you have a CSF leak or ....or Two we call them Chiari headaches & they will come and go forever. I called them hitting a windshield while doing 65 headache. Do you have a pressure headaches also? I think it's a common untruth that you will have surgery & everything will be ok. The decompression surgery is to release the blockage of CSF & to mechanically fix the malformation. I am sorry, but you will still have symptoms the rest of your life. The surgery is not a cure all. It just saves your life. I have read this week alone two other posts about dr's telling their patients they would be better than new after their surgery. I would advise you run fast if a NS told you that. He is not telling the truth & probably doesn't know the truth. It makes me so angry, so called specialists give people false hope. Please know you can ask any question here and get an answer from a real specialist. A Chiarian. Please don't be suprised if you get additional symptoms. I hope and pray you don't, but let us know how you are doing.
Thanks for the swift replies, sorry to hear you're all still having to deal with the brainache. I'm pretty sure I don't have a csf leak, I had one of those after surgery and ended up with a pseudomeningocele, pretty nasty, but blah de blah.
What I call a thunderclap headache is the same as the chiari headache, that's what I'm getting at, it's tied to chiari, and as far as I'm aware it's caused by a build up of pressure due to the blockage. Therefore, if the surgery removes the blockage, the csf shouldn't build up anymore, and although you may be left with other symptoms, this specific headache shouldn't happen as the headache itself is mechanical. Unless of course I'm missing something? Does anyone know the specifics of these headaches?
Could it be that the surgery made more room to let the csf flow, but not enough room to prevent the headaches?
Eek! That can't be good at all, I hope you get that fixed soon!
Katie Gleaves said:
Sorry failed to mention mine has mostly been infection
Katie Gleaves said:
I am sill having the chiari pressure headaches. I have had a ton of fluid build up and major pressure issues.
crackhead said:
Thanks for the swift replies, sorry to hear you're all still having to deal with the brainache. I'm pretty sure I don't have a csf leak, I had one of those after surgery and ended up with a pseudomeningocele, pretty nasty, but blah de blah.
What I call a thunderclap headache is the same as the chiari headache, that's what I'm getting at, it's tied to chiari, and as far as I'm aware it's caused by a build up of pressure due to the blockage. Therefore, if the surgery removes the blockage, the csf shouldn't build up anymore, and although you may be left with other symptoms, this specific headache shouldn't happen as the headache itself is mechanical. Unless of course I'm missing something? Does anyone know the specifics of these headaches?
Could it be that the surgery made more room to let the csf flow, but not enough room to prevent the headaches?
Offt, good luck Katie, and remember "3 is the magic number!"
Katie Gleaves said:
Actually headed to hospital now for a third surgery on my head. It's been. Crazy 10 weeks
crackhead said:
Eek! That can't be good at all, I hope you get that fixed soon!
Katie Gleaves said:
Sorry failed to mention mine has mostly been infection
Katie Gleaves said:
I am sill having the chiari pressure headaches. I have had a ton of fluid build up and major pressure issues.
crackhead said:
Thanks for the swift replies, sorry to hear you're all still having to deal with the brainache. I'm pretty sure I don't have a csf leak, I had one of those after surgery and ended up with a pseudomeningocele, pretty nasty, but blah de blah.
What I call a thunderclap headache is the same as the chiari headache, that's what I'm getting at, it's tied to chiari, and as far as I'm aware it's caused by a build up of pressure due to the blockage. Therefore, if the surgery removes the blockage, the csf shouldn't build up anymore, and although you may be left with other symptoms, this specific headache shouldn't happen as the headache itself is mechanical. Unless of course I'm missing something? Does anyone know the specifics of these headaches?
Could it be that the surgery made more room to let the csf flow, but not enough room to prevent the headaches?
Again, thanks for your replies, however, and I don't mean to be insensitive or to upset anyone, but my aim here is to find out how common it is for folks to still have these specific headaches after surgery, how frequently they get them, what triggers them and to try and work out why it's still happening in the hope that collectively we can find a way to fix it.
So... can I ask that any replies to my questions are specifically related to headaches triggered by either singing, laughing, bending down, coughing, pooping or a similar activity. These headaches come on almost instantaneously and are extremely intense for the first 30 seconds or so (they knock the total crap out of you, if you've had one you'll know about it). I believe this type of headache is called a Thunderclap Headache of which one of the causes is a Cough Headache which in turn is one of the primary symptoms of Chiari Malformation Type 1.
I understand there are other types of headache associated with Chiari, however, if we start discussing all our symptoms here rather than sticking to the point, we're not gonna get very far. So if you'd like to discuss something other than these specific headaches, please feel free to post on my wall.