Chiari Online Support Group

I am new, and needing help

Hi I am new to this whole Chiari thing, and I was willing to know if there were any ways you could like prevent the symptoms, to make them not as bad?

Hey Mollie,
Firstly, Welcome to Ben’s Friends.
Being new to Chiari (or anything neurological) can be a scary. One of the issues is that for some symptoms can be minor or minimal, but for others they can be HUGE. Some medicos are of the view that if the tonsil is minor then the symptoms will be minor and yet if you read through some of the posts in the community you’ll find that this is far from their reality.
Can I ask, what sorts of symptoms are you experiencing?
What types of ‘management tools’ have you tried?
Which ones are you using?
This may assist others to give you some other ideas in regard to their own management tools be that medications, relaxation techniques, therapies etc

Merl from the Moderator Support Team

Hi,
I have recently found out my Tonsil is 8mm down my spine, I don’t know if you understand that. I have found that when I swallow, I have excruciating pain in my neck, and when I am playing any sort of running sport, my neck is also in excruciating pain. I have tried physiotherapy and sleep, but none seem to be working at the moment.
Thanks,
Mollie

Hey Mollie,
Yes, I do understand when you say ‘my tonsil is 8mm down my spine’.
You’ve obviously been diagnosed by a dr to know this. What type of specialist are you seeing? Neurologist or neurosurgeon? Or both?

Physiotherapy is great for muscular and connective tissue injuries. Chiari is neither muscular nor connective tissue related. Physio may help you relax, it may reduce tension which in turn may reduce tension in your neck, but chiari is a malformation. Physio cannot remove it.

Pain is the body’s warning system. It’s telling you something isn’t right. You NEED to listen to your body. If a running sport is causing such pain, then, sorry, but you body is telling you something. STOP. I say this from my own experience my own body was telling me and I didn’t listen, I thought I needed to build stamina to beat it, only for it to turn around and beat me severely.

Now, I am going to be the very last person to recommend neurosurgery, I’ve had a few myself and if you can in anyway avoid a surgical route I would HIGHLY recommend it. For some people recovery can be a breeze, for others it’s not that easy and yet for some it can be a nightmare. Our brains are very unique pieces of equipment, no 2 are the same and small changes can have HUGE effects and this is why I ask if you are consulting neurologist or neurosurgeon? Or both?

Merl from the Moderator Support Team

I am consulting a neurologist, but i am only 13 years old, what if the surgery doesn’t do anything?

Hi Molly! Thanks for asking again. It’s scary stuff, isn’t it, especially when you are dealing with this at such a young age. When you registered, we thought that you were an adult and you aren’t. Sooo…

It’s OK, you can still be here, but what we need is an acknowledgement from one of your parents (or guardians) that they know you are participating on this forum.

I’m going to send you an email, which I would like you to forward to one of your parent or guardians, and have them reply to me by email. I have some questions for them.

In the meanwhile, I’m going to put you on “HOLD”. You can still see everything on the site, and you can message the moderators, but you won’t be able to post until I make contact with your adult(s).

I will PM you, with my email address.

All the best to you

Seenie from Admin.