Hello…I’m 15 mo post surgery for Chiari type 1, 8mm herniation. I had severe overall body pain for over 10 yrs and thankfully…surgery has helped body pain tremendously. However…my headaches seem to be a different beast if you will. I of course had HA prior to surgery but more of extreme head pressure and thunderclap HA (felt like my head was surely to explode any minute) Now they seem to be slightly different…lasting 4 days in a cycle. I’m not sure if they are “migraines”?? All I can do is put ice on my head, ear plugs and eye mask. I still have the pressure feel at times like my head is being squeezed, I feel my throat tightening like I can’t get a good breath and positional dizziness. Singing, talking at length, laughing, straining, bright light, yelling at ball games, stress are all triggers for me. If the skull malformation has been fixed and the CSF is good why the continued HA? Of course the NS will say all is fixed and their job is complete but for the love…it’d be nice to have a realistic idea of what we will possibly still deal with.
I also suffer from chronic headaches. What you are describing sounds like a Chiari Pressure headache. I try and treat mine with prescription medication, but it doesn't take all the pain away. I have had them last for weeks. Changing weather patterns that makes the barometric pressure drop will bring them on, so will physical activity, stress, coughing , laughing,sneezing,bending over, hitting your head or falling, cleaning, allergies & sinus problems & we had a discussion recently that many Members said sexual activity brings them on also. I would advise you to check with your dr & see what they say about maybe headache medication. I also try meditation & a hot shower or ice. Sometimes I just lay in bed with a pillow over my head. They say they are caused by a fluctuation of the balance of Spinal fluid vs the blood that is pumped into your head & any other fluid you may have in your sinuses getting out of balance. If you search headaches on the discussions page. It will bring up some good articles and discussions about Chiari headaches. I also have migraines and complicated migraines. I am so sorry you are going through these headaches, but you will see many Chiarians do.
Tracy Z.
I am going through the same thing. My NL (who is a joke) said that they are Basilar Migraines. Funny that they feel like the before surgery pressure/chiari headache. Oh yeah, he also says that the chiari was never the issue, the Basilar Migraines was what caused everything. Needless to say...I am looking for a new NL. He just keeps putting me on different meds. I have a lot of nausea associated with and w/o these headaches. He put me on Phenergan (Promethazine). He did somethign right! It helps with the nausea and the pain of the headaches!!! I didn't believe him until it actually helped. I was completely stunned!!!
Oh, I am 8 months post op
Well, sorry to say, my NS says the same thing. Surgery had optimal outcome, everything looks good, no flow blockage. Actually shrugged, cocked his head to one side, and said he had NO idea why I would still be having problems. Headaches( mine seem to run in 2 day cycles and I do get pain/tightness in my throat like it's closing up, weird!), neck pain, nausea, equilibrium issues (I fall and/or tip over...alot), blurry vision, yada yada yada, woof woof. Pretty much washed his hands of it, prescribed neck PT, and sent me back to my NL for "medical management" of the symptoms. That was 4 mos post-op, now 7 mos post-op, same symptoms, and in PT 2 x a week to try and restore the range of motion in my neck, which is ...limited. Yippee. Now, I get to play prescription roulette trying to find something that works. shrug. I'm on my second, headaches are the same but I'm emotionally numb and have no libido. It's a hoot. Kidding.