Hi! I am in college, and I was diagnosed with Chiari type 1 in December. I had surgery in January. After surgery, my migraines got better for a week or two, but now they are worse than they were before surgery. I was never referred to a neurologist, my family practitioner had just referred me straight to a neurosurgeon for surgery. Should I go back and see about getting a referral to a neurologist.. or is there anything that can even be done for migraines? Normal meds do not help mine at all. Advice would be appreciated!
I would suggest a neurologist, my surgeon told me if I’ve had migraines in the past I would still get them after my surgery.
Imitrex has been my savior.
I had my surgery in 2011. Chiari is symptomatic. Luckily I didn't experience excessive migraines yet. And I hope I wont. I experience other symptoms like coordination, loss of balance, coughing and sneezing from time to time, slurred speech etc.I. suggest that you see a neurologist for your problem. In my case whenever I feel something unusual I always consult both my neurosurgeon and neurologist.
Look for a headache clinic. I found one by accident on Long Island, they helped me greatly. I wound up getting botox injections, they stopped my headaches. I know everyone's pain is different, but it helped me.
Yes yes yes and yes get set up with a neurologist =) I have not had surgery but my doctor gave me medicine thats a generic for imitrex and when i have to take it it works wonders!
While seeing a neurologist makes sense, you need to go back to your neurosurgeon also. You say you were better for 1-2 weeks but are now worse than before surgery. That causes concern for a surgical complication.
Did they enter the dura?
Do you have a CSF leak?
Was idiopathic intracranial hypertension unmasked by the surgery?
I would suggest traveling the neurology and neurosurgery pathways at the same time. I would also strongly suggest a repeat head MRI(and a consideration of cine views to look for scar blocking CSF flow) prior to your neurosurgery follow-up so they can make sure the anatomy is OK.
15 years living with uncorrected Chiari malformation I learned to differentiate between Chiari headaches (coming from back of the head) and migraines. It all started with only Chiari headaches (those coming from the back of the head with intense pressure, nausea and urge to vomit, end of the world kind of headache). A year ago hell broke lose and I started having daily migraines (side of the head, all over extremely annoying headaches). They believe Chiari can trigger migraines and those migraines are tougher in people with Chiari than in people without malformation. There is little that can be done for Chiari headaches except for surgery and you've done that. Migraines are different story. There is preventative treatment like Topiramate or botox injections and also there are medication designed to abort even worst migraine attack like Sumatran. If you take Sumatriptan during bad headache and it works, you know it is MIGRAINE and nothing but migraine. But you need prescription for these medications, so you do need visit neurologists. Most neurologists I saw told me all my headaches are migraine (they just did not believe in Chiari headache, I guess you got to feel it to believe in it) so being diagnosed with migraine isn't that hard.
To follow up on your surgery success you can do cine MRI, one that shows CSF flow.
The fact that you did not have much headache for 2 weeks after surgery can be just coincidence. If you had migraines before surgery you probably noticed they go in cycles and you have better weeks and worse weeks.
It is good that you had surgery while still young, you won't have to deal with all nasty symptoms Chiari might have had in store for you. Your headache at this point is likely migraine....(unless it still feel like Chiari headache?) And as I mentioned above migraines are manageable from folks remedies to meds....migraines are better than Chiari symptoms. And since migraine is only something that is triggered by Chiari not direct symptom of it surgery would not fix it....at least it won't be immediate fix. Your brain need recover and readjust to new correct shape after living with malformation for years.
I just put up a post about headaches so you'll have to check it out. Not sure if you have been diagnoses with migraines or am calling your head pain that.
Good luck with finding someone to help you with that!
I had my Chiari surgery in 2011. Luckily I didnt feel any symptom after. But now all the symptoms I felt before the surgery recur, Based on my readings ACM does not go away after surgery. It progresses as the person gets older. So lets all be ready to face the problem...take care...
I had my surgery for ACM1 in 2002 and within 6 months, my headache pain came back. It was several months after they returned before I found a headache clinic. I would recommend to all with this type of head pain, or any type of recurring headaches to seek one out. They started giving me botox injections, my headaches were gone. I got 6 on my forehead, 3 around each ear and 3 down each side of the back of my neck. We started with monthly and went to two month intervals, finally settling into every 3 months. We stopped my injections for an MCA aneurysm clipping surgery in November of 2010, staying headache free, we decided not to continue with the injections. I am headache free to this day.
I hope this helps all of you,
I just read in Headwise magazine published by National Headache Foundation about new NON-drug option for migraine treatment approved by FDA in 2014. It is a transcutaneous neurostimulation device CEFALY. Available by prescription. More infor here
I will be definitely discussing this device with my neurologist. Sounds interesting.