Relapse with symptoms

I am starting to feel like I am crazy, but I know how I feel.

Let me start from the beginning. I was first diagnosed and had my decompression surgery in 2012. Since then I have had a headache here and there, but nothing compared to what I have been experiencing the last few weeks.

Mid August is when the ongoing headache started. I have not had a moment where I have not had a headache, there has been no medicine that made it go completely away. I went to the ER on the 22nd because the pain was so unbearable that I was not able to see or even form a sentence. It was the scariest thing, not being able to communicate with anyone what was happening to me. After meds I was able to start communicating and they were able to get the pain, that was a 10/10 to a 5/10 using morphine. I was admitted to the hospital for them to run further tests, after the CT scan coming back clear. Once admitted the next few days I had MRI and they did a lumbar puncture (which had to be done twice since they got nothing the first time). Still with all these tests everything came back clear. I have been released and been home dealing with my symptoms (headache, massive head pressure, ringing in my ears, vision issues, numbness and tingling in my hands and feet) since the 26th.

Today I went back to see the surgeon who did my decompression 4 years ago and he said that everything looks okay and that it is not from the surgery. I lost it in the office. This pain is real, and I cannot function like this. He wants to do another lumbar puncture because he said that he cannot rule out that there is no pressure on my brain?!?!

Please help!!! I do not know where to go from here. Has anyone else experienced anything like this after surgery? I need to be able to live my life, get back to work and care for my family.

I’m very sorry to hear your having these migraines again. You may have to go back to your neurologist for migraine treatment or have a referral to pain management. It may not be Chiari, there are other illnesses that we suffer with and have these awful migraines. Don’t give up, there are some very good medicines they have out now and just hitting on the right one might do the trick for you.
Getting down to the bottom of the migraines is your main complaint, right?
Talk with your neurologist, because most of them specialize in migraines.
Let us know.
Hugs

I have been on water pill ever since my surgery. To help keep the pressure off my brain. It seems to help. Because once I try to stop taking them I start getting headaches again. I really don’t recommend going to prescription for the first route. However, I know what website I have just joined and your a tough cookie like the rest of us. And if you willing went to the hospital, then I really wanted to give you this information. Cause we all know how much we all love hospitals. Lol hope this helps you. Best of luck.