Looking for answers after craniotomy

[fanna07]

Hi my name is Joanna, I am 38 years old. Almost 9 years ago I had a craniotomy performed for a tumor that had bled and I had an avm at same site (cerebellum/brain stem area). I did fine for first three years after surgery. It has been after that time I started experiencing headaches and times of confusion, disorientation, vision problems, slurred speech. I have had nerve blocks done, when that didnt work I had my greater occipital nerve on left side of head removed. I have been on numerous antidepressants, anti-seizure medications, high blood pressure medicines. right now I am feeling lost and unsure of what to do with myself. I live in pain and then I have these what I call spells of the other symptoms. It is getting harder to hold down my job and raise my 9 yer old son. If anyone is going through these same symptoms please let me know. I feel like I am going crazy.

[rumpled]

You need a more supportive doctor. You have way way more than a simple headache going on and you have a very good reason to have pain and it needs to be addressed.

As for the 6 week trial periods... Been there, done that, have the piles of records to prove it and nasty comments that made me give up... Until at least a couple doctors realized I needed more and nicely pushed me. You will find those doctors but it takes a lot of time... Don't give up.

I am sorry I am not around as much. I am just starting to feel better so I should be around more.

[fanna07]

I know I have been on so many different meds...I am over it. Try this, try that, I feel like at times my life is broken up into 6 week trial periods.
I have thought about disability but one of my doctors said it is very hard because they are treating you for headaches... I dont know going to look further into, I know I cant keep going the way I am with work especially when I have started making mistakes. Was really hoping to find someone on here going through what I am going through, I tried acupuncture, but that didn't work for me. They want to try the botox, but i am so tired of being a guinea pig and nothing works,

[rumpled]

I am so sorry you are having so many issues.
I don't know anyone who is posting currently with your issues... but you are certainly not crazy!

I don't have 1/3 the issues you have, and I know pain is such an issue. They send you to pain management who gives you pills and then everyone else complains you are on the pills that you don't want anyway as you would rather they find and eliminate the source of the pain.

I use acupuncture (although I am post op cancer, have an infection and can't drive so that has been on hold for a while). I tried botox but that did not work.

Have you considered going on disability?