Severe Chiari Headache and trouble swallowing many years post op

I had decompression surgery 12 years ago. Some symptoms went away, some stayed. In the last couple of years my symptoms have gradually gotten worse and I've begun taking Gabapentin. Four days ago I began having the worst Chiari Headache that I've had since before surgery. And it hurts to swallow, even liquids. When I do swallow something it hurts in the base of my neck, my chest, and I have what feels like bad heartburn. I'll be calling my Neurosurgeon Monday morning. I just can't imagine why i'm having such trouble so long after surgery. Anyone else out there experience these kinds of things?

hi I have the same problem I have chiari malformation 1 but I didn't go for surgery I just found out I had it by my MRI in November and I have very bad head aches neck pain and I have vertigo and very bad hip pain my body is getting worse I see the doctor on the 10 of march so wish me luck im very scared

I'll wish both you luck and better still, a great treatment plan from your neurosurgeons. Keep us posted, Claudia and Dolphin.

thank you so much

I had decompression surgery April 2013, then a syrinx removed March 2014. I felt great until a few months ago when I began to experience sharp pains radiating up the left side of the back of my head. This weekend the pain returned and radiated down my neck and left shoulder.

I, too have experienced swallowing problems, and ear pains and pressure behind my eyes which affects my vision.

One wonders how many Chiari surgeries are possible! I guess I don't want to know really.

My prayers go with you. Easy for me to say, but there isn't anything to fear - other than the unknown. You were very lucky that the radiologist identified the chiari and saved you from being shuffled around from specialist to specialist. I've know others who spent years being told 'there is nothing wrong with you."

dolphinlove123 said:

hi I have the same problem I have chiari malformation 1 but I didn't go for surgery I just found out I had it by my MRI in November and I have very bad head aches neck pain and I have vertigo and very bad hip pain my body is getting worse I see the doctor on the 10 of march so wish me luck im very scared

Hello,

I am a year and a half post-op and continue experiencing new symptoms. I have been studying doctor lectures from various universities. Below is a link to Dr. Peter Rowe's, Professor at Johns Hopkins, lecture on "Dysautonomia & Postural Orthostatic Tachycardia in the Chiari/EDS Population".

If you go to minute 53:22, you will hear him describe a case in which a woman had a decompression and laminectomy as a teen and many years later as an adult her discs are warping inward blocking the CSF flow causing a recurrence of the chiari symptoms.

https://www.youtube.com/watch?v=UCbWEKQHjdk

I still get the debilitating chiari headaches that lasts for several days. I am also on gabapentin 1800mg, it only lessens the nerve pain in my neck, legs, and arms. Unfortunately, I still feel the burning sensations throughout my extremities and can only function for about an hour at a time.

Hi Claudia, I had my first Chiari surgery in Oct.2011. Just about 6months after that my headaches came back ,but this time a lot stronger than before,and I also had a hard time with swallowing,it felt as if things would just get stuck at the base of my throa, even water so times…this was all related to the Chiari,I also then started to exspreince the dizziness, lots of doctors said it wasn’t related , but now at 9weeks post op , I can say it all was!!! I am not dizzy when standing anymore and I havedn’t chocked since surgery not once!! Good luck do lots of research and find a very good Chiari doctor, I had to go thru 6 NS before I found the rite one!