Hi Kristen! My name is Jess, I stumbled onto your post and wanted to say I'm sorry that you are in so much pain. I know what it is like, I am 24 and have been through it too. Pain is truly the worst, it completely rules your life. Just don't forget that we are on here for support! I agree with SelmaS. Make sure you check for other conditions before you decide on surgery.
In 2005 I came down with the worst headache. I was one of those kids who thought it was normal to take 5 ibuprofen a couple times a day. I was just about to graduate high school and I couldn't get rid of the pain. A friend referred me to a chiropractor who realized after a week that I needed some testing. (I was also going to multiple doctors and they missed it)
Long story short, I just wanted the pain to go away, so I did the decompression. We didn't do any extra tests, they just assumed the chiari was the source of all my pain. This is what happened...
June 2006- Chiari decompression which was successful
- the next week my pain reappeared. The doctor ignored it thinking I just needed to heal
August 2006- Emergency Shunt placement - I had WAY too much CSF
September to December '06- I had 4 separate emergency revisions because I was either so lethargic that I'd drift into unconsciousness or I'd severely throw up from too much fluid draining.
December 06- Went to mayo and had the shunt removed and a third ventriculostomy
where I lost about 3 years of memory, still have short term memory problems, and I was on a feeding tube for a 1 1/2 months because I forgot how to swallow.
2007- I went to MHNI where I was in the program for almost 2 months-
I was sent home with a diagnosis of chronic severe daily head pain. They said it was all the symptoms of a migraine but much worse. No migraine medications worked and almost no narcotics.
later that year I found a doctor who did exploratory surgery called neurolysis. After 7 separate surgeries I finally stopped. The last one helped some.
Since then I have been taking methadone to somewhat control the pain. I have been in rehab programs, pain clinics, and I just cannot get relief either.
I hate taking this drug because my body depends on it, and it is not very effective. I do get botox. Have you tried that? Also I get massage, acupuncture and minimal chiropractic care. I apologize that this is so long, but I wanted you to see what happened to me because I didn't check everything out.
Know that I am here if you need someone to talk to. It sounds strange to say that and to use a stranger for support, but only people who have gone through it truly understand. I lost most of my close friends, and I have a feeling I'm losing my fiance now too. Chronic pain is terribly hard to deal with, and it effects everyone close to you. Just don't ever think you are alone..
Jess' Pain Tracker