Discussions that mention tylenol

Brain & Nervous System Disorders board

Hi Scout~

I did go to the MS site and read your post. Aren't they a great bunch over there? It almosts saddens me to NOT have an MS diagnosis in the end because they are the most supportive individuals and such a closenet group.

But here I am with a chiari diagnosis with not many people to turn to on these boards. It is scary not knowing whats going on and not knowing who to turn to. So hopefully I can help answer some questions you might have.

I am so sorry to hear that your having so much trouble. Its very important with this diagnosis to learn as much as you can so you can better advocate for your health.

So many neurologists and neurosurgeons learn about Chiari in medical school and what they have learned is outdated. There is alot that has been updated as far as knowledge and treatment for chiarians to date.

Firstly, Chiari is congenial in many cases. The skull doesn't form properly, leaving a smaller space for our brain. This can cause a herniation in itself. But also head trauma, such as car accidents, amusement rides, contact sports, falls, jerking of the head and neck and so much more can cause the tonsils to descend. But there is also aquired chiari that is caused by head trauma as well.

The 1st MRI you had stated, didn't show chiari but years later, it did. So maybe 2 things could have happened. It may have been a borderline chiari and something happened to worsen the herniation to 6mm or, as in my case, because it wasn't something they were looking for on the MRI, it could have been merely overlooked. My MRI was found to be "normal" with no findings but I saw my own descending tonsils and brought it to my neurologists attention and he admitted he had overlooked this. He was looking for legions because at the time, I had alot of classic MS symptoms.

So many of the symptoms you are experiencing, I too have. I have a mild herniation but this has affected the CFS flow in the back of my brain. So there is more than just the herniation to concider when your experiencing dehabilitating symptoms. But you always have to keep a doctor in the loop even if you suspect your issues are chiari related because as you know, it could be something else causing symptoms, such as low vitamin B12 that you had going on.

Most drs believe that a mild herniation can't cause serious symptoms, when indead they can. You really need to seek out a true Chiari specialist to evaluate the whole picture. They put you on a scale of severity to how this is affecting your quality of life to determine if surgery should be done. Sometimes its an option and sometimes its not.

For me, I fealt like I had no options because it had changed my life so drastically. I went from a very active mother of 3 to being unable to work, and just a simple trip to the grocery store was too much. My legs got so weak, I couldn't walk without it being a workout and I'd come home and collapse.

You mentioned the headaches not being severe. I've had headaches my whole life and lived on tylenol which helped. But I never had the chiari headaches you hear others talk about. I had a lumbar puncture to rule out MS last year and THAT was what set my headaches in motion. NOW I understand what others deal with on a daily basis. Its a horrible way of life to live this way. And nothing, even morphine, touches my pain. The only relief I get is when it starts, I get a stinging burning pain and I know if I don't lie down, I'm going to be in trouble for days. So I use self medication and rest.

But, like I said, this has changed my life. I can only be up for a couple of hours before I need to rest. I'm also very careful with my head and neck. I used to go to chiropracters alot, now I know thats the worse thing. I LOVE amusement rides but now I can only watch and get enjoyment from others having fun. There are alot of things that can do more damage and make things worse that must be avoided. Heavy lifting, pulling and pushing as well.

So if your headaches haven't gotten really bad, my best advice is to pamper your body and treat it with TLC. There is no "cure" for chiari. There are surgeries that can slow the progression but the best thing you can do is to prevent things from worsening. If I had know what I know now, I would have been kinder to my body all these years. And finding a good chiari specialist to evaluate your condition is a step in the right direction. If its affecting your quality of life, its definately worth pursuing!!

If you have any questions, feel free to ask. I'm here if you need me and know that your not alone!!;)

Take care