I found this amazing support group almost 10 years after my first MRI mentioning a possible Chiari Malformation. It was brushed under the rug all that time by doctors. So many other tests were done and so much money was spent. I almost forgot about that MRI report until I was ready to crawl in bed and stay there. When I pushed again, and after a horrible experience with a neurosurgeon, my insurance found someone for me to go to that has a specialty in Chiari (Dr. Ward at VCU if you’re in VA! He’s AMAZING!). After a CINE MRI found that my CSF was blocked, we decided to do the posterior fossal decompression surgery. Immediately following the surgery, it was difficult, but I’m allergic to most pain meds so they had a hard time getting that under control. I thought I’d be back to work in 2 weeks but it really took one month. Age may have something to do with that, too, because I’m in m late 40s. That’s okay though. Since having the surgery, I am a different person! I can schedule things again because I know I’ll be able to attend. Concerts, walking, being a mom and grandma, all things that are again a part of my life! Pain is tolerable and probably has more to do with the 3 back surgeries. I wish I had asked more questions, made people listen, and done the surgery 10 years ago when it first appeared on my MRI. There are still a few pains in my head, which are related to this surgery, but they lessen every day. I don’t have feeling in the left side of my head but the dr. feels like that will not be forever and that the cut nerves will grow back but it may take up to 6 months. If you’re struggling, are being told that 5mm isn’t truly Chiari, and having a hard time finding a doctor…don’t give up! What you’re feeling and what you’re going through is legit and can be helped!
Your story sounds so familiar. I am so happy for you. I am hoping to have the decompression surgery this year.
I’m glad you are on the mend😁I’m having my decompression surgery tomorrow. What was your first two weeks of recovery like?
I had a decompression surgery 3.5 years ago. I had a chiari Type-2 with 11 mm. But still I’m having walking problems, neck pain, stiffness in both hands fingers. I consulted with my dr, but he always tells me 1 thing that surgery part is done. All you can do is now focus on physiotherapy. But I’m really tired with daily physiotherapy. not getting any output, really tired of my life. I’ve 2 small kids and unable to handle their daily needs also. Please suggest how can I’m improve my chiari symptoms.
Bless you and hang in there. I hope you get the help you need. In the meantime manage anything you can that irritates nerves such as dental issues or poor posture. I will be praying for you.
Hi Tina, I am in Richmond , Va also. I just had back surgery in December '18 with Dr. Placide. I am glad that your surgery helped you so much and that you are feeling better. How much skull did Dr. Ward remove from the back of your head? It would be neat if we could meet up for a cup of coffee sometime. Would you be interested?
Hi to everyone
I’m going to have my 1 year anniversary with a decompression surgery and I have to share to everyone suffering and feeling like nothing works out.
Yes I still have many issues with pain and stiffness but the feeling of being alive doing my job and giving inspiration to other keeps me going. We all suffer in our ways but we are fighters.
I believe that we all have such an amazing story to tell we are survivors of the unknown, this condition is something we are not aware of but coming out a survivor means we are ready to take any obstacle head on and make it work for us.
I want share my love and support to all still struggling with symptoms and pain, and keep pushing it gets better even in hard times…
I am glad to hear your surgery was a success. I, too am in my late forties, and it’s coming to a point where I think I will have to have surgery. I’m a nurse. I’m not sure what I’m afraid of, the thought of someone messing around my brain doesn’t appeal to me. The symptoms are getting worse. I finish school in May, praying I can make it until then. Glad to hear your doing well. I trying to find a surgeon. I’m going to look into your surgeon Dr. Ward. Thank you.