I’m 21 years old and ended up with a chiari diagnosis just a week ago. I’ve been in constant pain ever since. I have headaches daily along with neck and back stiffness. I have a 16 month old son who demands my attention and I feel like I’m failing him.I hate asking for help but at this point I have no choice. I’ve researched decompression surgery and I’m guessing that’s the route the neurologist is going to recommend. I still need more mris done but I can’t live with he pain I’m feeling. I feel a lone as no one around me has ever heard of chiari.
Proper route is a chiari specialist only. Because anyone else can lead u wrong. New York chiari institute is one place and dr michael rosner neurosurgeon in Hendersonville nc is another…
Good luck
I have been decompressed and u use essential oils for pain .
Alot of new be info u should know
-
You should have a tilt table and brainwave function test.
-
Sleep apnea test.
-
Full spinal mri because to rule out Syrinx
-
Surgery is not a cure. Surgery stablizes your brain
I do understand your pain it will be hard but you will get through it. Take it on day at a time. I have a 2 year old and a 5 months. I had the decompression surgery now I need the shunt put in. It’s scary but I got to keep going for my babies. Look up chiari learn about and teach others about it. You can and you will get through this I am cheering for you and know you are not alone… We may have chiari but chiari doesn’t have us…
I just want to say you are not alone. There is people out there willing to talk and support you through this. This support group is one of the places.I am 16 and I got diagnosed earlier this year. I felt alone at first too, even with two other family members with Chiari, no one seemed to understand. I reached out online and I've felt a lot better! Being in high school, trying to think about your future with college and finding out you're having brain surgery in a few months is scary but I can't imagine being a mother to such a young child and battling with this!
A few things I can say is, first, don't scare yourself with the internet. I know this is hard finding out so sudden and having no one around but I had so much anxiety because of it. I scared myself into thinking I can never live a normal life. I scared myself into thinking I was going to have surgery before I even talked to my doctor. Second, try to stay positive. It's hard I'm sure but don't think straight to surgery, Surgery is not actually a go to treatment. Surgery is serious and a lot of things are taken into account first. Doctors don't straight away suggest surgery. It's only in severe case. But in the end, the decision whether to have surgery is up to each individual and their doctor. There is other treatment routes with chiari. Some doctors just suggest waiting it out and getting a MRI yearly. I've heard my doctor say she suggest surgery to people with syrinx or/and severe symptoms. I have a 11 year old cousin with a 10 mm herniation with a syrinx, They suggested surgery with her but her mom decided just to wait. A year later she had another MRI and it didn't get any worse so she doesn't have to have another MRI for 2 years! I also have a 12 year old brother with a 5mm herniation who was told surgery wasn't the route for him so they would just do MRIs yearly. (Praise the Lord!!) With me I have been very sick for over a year getting tested for everything to figure out what was the problem. My herniation is 11 mm with severe symptom, so they decided for surgery.
But listen to me, this is very important, DO NOT LET THE DOCTOR TELL YOU HOW YOU FEEL. I have heard of many cases of the doctors saying symptoms aren't "chiari related" and getting turned away. Obviously doctors are skilled and we should listen to what they have to say but they should also listen to how our pain is effecting our everyday lives and we just want relief. In the end you know how you feel the most. Don't be scared to get a second opinion but also don't make the life changing decision of brain surgery so easily.
Lastly, you are not failing your son. Doing what's best for you and your health is also what's best for him considering you take care of him. A strong women says she doesn't need help, but a stronger women is willing to let others help her. Chiari is not something you can tackle all on your own. You sound like an amazing mother who cares deeply for her son. One day when your son is older and he learns of the battles you dealt with he will think, my mommy was so strong!! So stay strong for yourself and your son!
Even if you are not religious you are in my prayers! I wish you the best of luck. If no one around you knows about Chiari use this situation to spread around awareness! :)
1 Like
There is a lack of research on Chiairi this is why few neurologist let alone family doctors know what to do. But with hope guidance and try to keep yourself informed you will get through this. You have the support of the people on this site as well. Hope all goes well!
I was diagnosed with type I March of 2015. I am a mother of 3 children now ages of 4, 6, 10. I had decompression surgery June 2015. By Sept. 2015 had more issue come about. Had to have a Spinal Tap done and the result were not good. Had emergency surgery the next morning. I was out of work from June to November. The hardest time in my life. I felt the same way u feel about failing my husband and children. The recovery was unreal. So many restrictions. Back to back like that was very hard on my entire family. If u have a support system you have to let them help as much as possible. Being an independent person this was very difficult to ask and allow people(my support group) to help with the things a mother is suppose to do. Whatever you do. Think positive and don’t allow the elements of the Chiari Malformation take control.
1 Like
Great advice Nellie, hope your feeling better now.