1 year post-op and still having symptoms

Welcome Greetings and Introductions
1

Hi everyone! My name is Mary and I'm new to this group. I am one year post-op Chiari decompression surgery. One question I have is, does anybody know if after surgery, it is still seen on the MRI that you have very little room for your brain? I was told this but it was brushed off. I am still having a lot of symptoms, such as daily head pain, Migraines, dizziness, Trigeminal Neuralgia, concentration problems, short term memory loss and more. I am very frustrated because I think most neurologists don't know much about Chiari's and there is not a specialist in my area. My neuro said the MRI findings have nothing to do with my symptoms.

A little about my situation: I was not diagnosed until I was 48, and had surgery within 3 days of my diagnosis. They said it was very rare to present this way. But looking back, it made sense. I had a lot of the symptoms my whole life. I would get terrible pain when I laughed or coughed. My oldest son also has a Chiari. I had been having terrible headaches but one day it didn't stop. It took 3 weeks of constant horrible pain and 1 trip to my doctor, along with 2 trips to the ER to get it diagnosed. I have never felt such pain in my life. I actually considered suicide because the headache wouldn't stop and I was being told it was just a migraine. I couldn't take the pain anymore. Since surgery, I went to back to work but was fired because I "was asking too many questions over and over again". I did not realize I was doing this. They said I seemed like I couldn't retain any information. They were very right, I couldn't. I have since filed for disability and I am still waiting on the decision.

If anyone could please give me some insight into this I would so appreciate it. It is so frustrating to keep being told that you are fine now just because surgery has been done.

Thank you so much for any advice or insight I can get.

Mary

2

HI, Mary, sorry to hear you are having such a hard time with this. I realize finding a good doctor is difficult, especially if there are no specialists in the area. But I will suggest you go for a 2nd opinion. Even Chiari specialists don't know much about it. It isn't unusual to have a 2nd decompression. Sometimes the best doctors remove too little or even too much bone, which either leaves the brain with too little space, or gives too much space, creating the possibility of cerebellum descending even further.

If the doctor says, your symptoms aren't from Chiari, what makes them so sure and what else then would cause them?

There are many other possible causes for Chiari-like symptoms. I hope your doctor dismissed all of those before preformed your surgery.

My best advise is - go for the 2nd opinion. Educate yourself about Chiari so that you know what questions to ask to your doctors and be the best advocate for yourself that you can!

Best wishes,

Kristine

3

Hi Kristine,

Thank you for your reply and advice. I actually do have a second opinion but it is not until April. I am seeing my regular neurologist March 9th. No, they did not do any other testing before my surgery. I guess it was kind of an emergency, he said I had no other options and he needed to schedule it immediately. I will definitely talk to the other neuro and ask his opinion on my MRI's. Since they said I did not have much room , maybe too much bone was removed, I did not know this could happen.

Again Thank you,

Mary