Hi, I am Niqua im 17 years old. I got diagnosed with Chiari 1 Malformation 3 week before the beginning of my senior year of high school on August 6,2015. I had Chiari 1 Decompression surgery on August 18,2015. The first day of my senior year. I recently returned back to school. I am a month and 3 days post operation. Chiari Decompression surgery was my first surgery ever and I didn't think it would take me long to heal, but I have noticed that I have to take my time and not rush. Since surgery i still suffer from pretty bad headaches that last 2-3 days. I was hoping after surgery I wouldn't have them anymore but I guess that isn't the case
I just wanted to welcome you again, Niqua!
Thanks for joining and sharing your story. I’m sorry to hear you continue to experience headaches. I hope at least their intensity has lessened somewhat for you. Glad you’re here with us. Please continue to reach out, we’re always here for you.
Hugs,
Laurie
Hi there Niqua, welcome. Glad that you've recovered from surgery and been able to start back at school but sorry you aren't haven't yet experienced much relief from the headaches. What I've learnt from this amazing group of people is that post-op recovery is a long, long process and it can be a year before you can truly assess the status of your Chiari and symptoms so please try to stay positive as it's still very early days for you. Glad you found us for support and keep us up to date on how you're doing. Kindest, Jules
Hi Niqua, I am so sorry to hear you still have the headaches. I also have a 17 year old daughter who was just diagnosed with Chiari 1 Malformation her name is Jocelyn. If you would like, maybe you two could be support for each other. I am sure you both will bounce back and have wonderful adult lives. As a mom, I am new to this but please have faith and try not to do to much to soon. I wish you all the best. If you are interested in communicating with someone your age about this (she has not had surgery yet we still need to find a neurosurgeon) please email me. Best wishes Lisa
Dear Niqua,m I am sorry to hear your condition, every one I heard was different, perhaps you might have to take yor time and take it easy..just listen to your health care professional's advice...do you think you went back to school to early?...when you said that you still have headache is the headache as bad as before the operation say in scale 1-10 (10 ill be the worse) how was the comparison between before and after?..do you still have medication?..have you ever try to take magnesium oil? it might help you reduce the pain.., I am chiari 1 waiting for the surgery..medication don't do anything for me anymore..I suffer terribly so my friend advice me to use magnesium oil each night before going to bed..its seem its help me a bit.
Sorry im late replying to you school has been stressing me out,Yes I do think I returned to school to early from what the nurse said at my neurosurgeons office that the doctor like to send his patients back as soon as possible, but I think 8 days was too early to go back.No my headaches aren't as bad as the use to but they still hurt pretty bad I would say on a scale from 1-10 it is a 7. I haven't really felt anything different that would be labeled good, I still have headaches, I'm having trouble remembering and concentrating, I have developed this tingling in my let hand that i never felt before. No, I didn't have anymore medicine the doctor only sent me home with 3 days on medicine when I went home from the hospital. I was told the over the counter Ibuprofen should work for any pain that I have.No I've never heard of magnesium oil where can i find it at I think I'm going to try it and see how it works. I hop everything goes well keep me posted on how your doing Thank you so much and sorry that I've replied so late
b2wc said:
Dear Niqua,m I am sorry to hear your condition, every one I heard was different, perhaps you might have to take yor time and take it easy..just listen to your health care professional's advice...do you think you went back to school to early?...when you said that you still have headache is the headache as bad as before the operation say in scale 1-10 (10 ill be the worse) how was the comparison between before and after?..do you still have medication?..have you ever try to take magnesium oil? it might help you reduce the pain.., I am chiari 1 waiting for the surgery..medication don't do anything for me anymore..I suffer terribly so my friend advice me to use magnesium oil each night before going to bed..its seem its help me a bit.
Hi Niqua,
You can buy Magnesium Oil from every health shop or even on Amazon or ebay in the UK it cost between £8 - £12 it last me for 3 months it is worth while to have it...having a shower before going to bed (a bit warmer than normal) especially shower it about 2 minutes around your neck and where it heard (occipital) that help me a lot as well, and very - very - very gentle movement 2x a day when a first wake up and 30 minutes before bed time on my neck (left.right,up,down,)..Yes, i will update you how I am getting on his waiting list, apparently this neuro surgeon I am going to see is one of the best in the UK, so I thanks God , how lucky I am..its a long waiting list.I hope my condition don't go worse. Keep your chin up.stay positive.make sure you keep contact with your health care professional