I was 16 when mine abruptly started with what I thought was a shoulder injury. I was not diagnosed until I was 44 years old. I have Chiari I and an 8.5 syrinx on my entire spine. It was so difficult to accept at 16 that I had this unbearable pain. I still have severe chronic pain and lots of nerve problems. I was 34 before I started taking a muscle relaxer at night which helped me sleep better. It took having lower back discs problems for the neurologist to spot the syrinx in my lower back and order more tests. I had a decompression surgery.

I've been pregnant 4 times and have 3 children. Surprisingly, I felt better when I was pregnant than at any other time. I would not trade my children for anything. So many times, we let our condition rob us of joys in life. Kids definitely keep your mind off yourself. That's a decision for your husband and you to make. It may require your husband to be a little more helpful. My husband has been very helpful.

I've never had the botox or occipital nerve blocks, but I just went to a neurologist in a city of 100,000. My neurologist just ordered MRIs, nerve tests, gave steroid injections, ordered massage and physical therapy, and prescribed pain pills. I gradually transitioned to less potent pain killers and lower dosage as I adjusted to the pain. I prayed to God if he was not going to remove the pain to please give me the grace to deal with it. I'm thankful with the extent of nerve damage that I've sustained that I'm not paralyzed or lost bowel/bladder function.

I guess with me being so young when I started displaying symptoms and not knowing the severity of the condition that I just lived my life and adjusted to the pain. I grew up in a generation of xrays that revealed nothing. Who knows if I would have had the diagnosis earlier in life if something could have been done to prevent further damage. But, in all of this, there is a purpose and God is glorified in my weakness. I pray for you and your husband and possibly your future children.

Thank you for responding! That you've had kids and been through multiple pregnancies is encouraging :) I'm active duty army (my fall was off of an obstical course in basic) so once I stopped being able to wear my body armor I had no choice but to go through a while gambit of tests. I guess I'm lucky that they found it so early, does our condition always get worse? What are my chances that it stays small? I don't get to choose my doctors so I get what I get. I love the botox though, it paralyzes the muscles and for about two months makes it so that I barely have to take any medications at all!

My daughter is in the navy, so I understand about you having to get what you get as far as doctors go. I am so happy that you're getting some relief. Even some relief is better than none. My neurosurgeon had told me that I had suffered irreparable nerve damage that would probably not improve but the surgery would help prevent future nerve damage. I truly believe in being proactive in prevention of future damage. I feel as if being inactive and being overprotective can make the condition worse. I believe that activity is necessary as long as hope and optimism. Sure there are bumps and slumps, but you just got to pick yourself back up. It seems so unfair to be hit with chronic pain at such a young age, but God has a purpose for you. Someone's life will be blessed. Take care.

Hello all, I haven't been on here in awhile. I was on amitriptyline(spelling), for quite sometime. I had been feeling much better, until a recent series of events occurred and I went off amitriptyline. I started having severe headaches, all muscle pain/tightness came back, now I'm dizzy and nauseous as well. Long story short, 3 weeks have passed feeling this way everyday. Can NOT take this another day. Doc attempting to have botox approved through insurance. Is there anyone else out there that can share their experiences with it as well?

Thanks,
Beck