Chiari Online Support Group

7 years post op

My Daughter had a successful decompression surgery 7 years ago. Just recently over the past 10 weeks or so, she has been becoming very dizzy, followed by a bad headache and pressure in her neck. The problem is she is now 22 years old and her own advocate. She went to the ED on Friday due to the fact that she almost passed out driving and can no longer drive. The movement when driving is making it impossible. It also becomes worse after walking for a period of time. It is tough to get her to the Dr and I do not even think she realizes how serious this is. The fact that she went to the ED speaks volumes as to how badly she had to be feeling. Her blooswork came back normal and the ED Dr recommended that she see a neuro ASAP and have an MRI done. Should she reach out to her pediatric neuro surgeon or completely reach out to another Dr? Also, does anyone have any ideas as to what they think could be going on? We have explained deeply how serious this is for her to get seen. She just graduated college and started a great job in her major. I think the fear of her losing it due to any time off is also a factor. Any help, support, or advice is welcomed and I am thankful for…

1 Like

That sounds very upsetting. I would start off by calling up her pediatric neurologist, and see what is recommended past there. Especially because he did the surgery, it’s where I would start. Keep us in the loop please.

Sharon

Thank you for the reply! I emailed her NS and he returned email within 20 minutes. He feels ordered an MRI for Thursday and we should know more by Friday. My question is…what could be going wrong as far as the chiari goes? What would he be looking for and how can it be fixed? I guess basically I am asking what are the odds that she will need another surgery?

That’s hard to say. Chiari can be progressive in some individuals. Could be looking for further herniation, cranial Cervical instability, basilar invagination, retroflexed odontoid, etc. does she have symptoms of other comorbid conditions such as Ehlers Danlos Syndrome that could contribute to worsening symptoms?

I’m sorry to hear this. I had my surgery 5 years ago and have recently began experiencing pains again. I went back to full time work and am hesitant about going back to the Dr because I am afraid they will say surgery is needed again. It’s serious, I know and I am sure your daughter knows but it can be hard when you want to do certain things. The doctor who did her surgery can help her find a doctor that would be a good fit for her.

I am struggling to find a good fit as I recently relocated to another state. My prayers are with her and your family.

I’m 39 years old. I had my Chiari surgery 4 years ago and since then I’m having same issues like neck pain at cervical junction area, numbness in hands, balancing issues. As per Neuro Surgeon & MRI Reports surgery is successful and no more decompression can be done. But till date my CSF fluid which was accumulated over my spine and compressing my nerves is still there. Any suggestions if Physiotherapy, Yoga can help me in this. I want to be normal so please suggest me what can help me to improve my situation.

Hi pammyg,

I’m sorry your daughter is going through this. I experience similar symptoms regularly, they vary in intensity. I had my surgery 2 + years ago. I’ll share what I know and maybe I can be of help. Since the brain sinks this means pressure is placed within the brain, on the brain stem and spinal cord, these areas control the whole body so, to me, all symptoms can be related to Chiari, how could they not? What I’ve been learning lately, I’ve been seeing a naturopath, is that inflammation can cause a lot of symptoms, especially with us living with Chiari. I’ve been on a diet more focused on anti-inflammation and this has helped me immensely. I have 80% less migraines than I used to, don’t feel as bloated, less hormone related issues, etc. The symptoms you’re mentioning could mean she has general inflammation, they could also mean the fluid in the brain is impaired by a syrinx or from narrowing (due to many reasons), or they could have a different reason. My first course of action would be to have an MRI done and rule that out. From there, I would focus on symptom management, what causes certain symptoms and how to solve them. I don’t drive myself because I feel too unstable, I would not feel comfortable or safe, so I understand your daughter’s predicament. Turning my head and bending cause me symptoms but I also have basilar invagination. If you have any questions for me or would like to know more please ask. All the best to you and your daughter.

I had surgery a lil over a yr ago. Because chiari is soo very sensitive, when my symptoms get worse, I stop And think about what could be making them worse. For example …a new bra had straps 2 tight, or my rubber shoes for swimming, and poolside took a lot of pulling to get them on and off. (Cut straps off) when symptoms get worse take a big break! Also found emotions have a big influence.