Chiari malformation

[Adamj]

I am so scared I’m starting to feel every symptoms I read. I’m freaking out. I don’t want this to kill me. I’m shaking. I’m trying to tell myself I made it through these weird feelings before.

[Agora1]

Adam...breatheGetting a diagnosis is not a death sentence. I am not a doctor but someone

who is very interested in the medical field. It still very well may be severe anxiety

symptoms that you are experiencing. Most people who have this issue don't even

have any symptoms. It's discovered when doing an MRI for something else. In your

case, that something else may have been because of the symptoms you have been

portraying.

The Neurosurgeon will go over your case and prescribe a treatment or just do a

wait and see, if he feels your issue is not a severe case.

When is your appointment with the surgeon? Just because he is a surgeon doesn't

mean that surgery is the only way to address this problem.

Keeping yourself in an anxious state doesn't help your state of mind and only promotes

the symptoms to exacerbate.

You are in the best of hands with your doctors. Sending you healing peace and calm.

Please keep us updated with your next appointment. You will get through this with

our support. We all care xx

[Adamj in reply to Agora1]

Thank you I’m just scared I should stop looking things up because I’m just going to make it worse for myself. I don’t have an appointment yet for the neurosurgeon.

[Agora1 in reply to Adamj]

I know you are scared dear...but looking up things only confuses you more.No matter what medical issue we deal with, we are all different in how we

respond and are treated by the doctors.

Keeping positive is the way to go. My best xx

[Jeff1943]

Adam, I'm British and I just took a look at our National Health Service website which I find always gives a balanced view.

Chiari is not life threatening.

It often has no symptoms and is only found incidentally when other illnesses are being investigated.

In many cases no medical intervention is required.

If your surgeon does believe a procedure would be helpful then this is straight-forward and is carried out under general anaesthetic.

Do remember that almost everybody in the world has some medical imperfection.

Your problem will be dealt with. You are not going to die. There is every good chance that with the supervision of your doctors you will live a long and able bodied life.

So you can calm yourself and look forward optimistically to what every day brings.

If it was me I would accept the Xanax for those times when you feel you need it as you come to accept what you have been told.

So I repeat what I have read on the medically authoritative National Health Service website.

This is not life-threatening. You and your doctors will deal with it. Life lies ahead.

[Adamj in reply to Jeff1943]

Thank you Jeff

[Dolphin14]

Adam:

I can understand you feeling anxious about this diagnosis. Of course it's frightening to hear you have something wrong with you.

I know a couple people with Chiari, one had surgery one has not .

The surgeon will be looking at your case specifically so if you can hold off on googling it will be helpful.

It is something you can live with. I understand how overwhelming this can be when you have an underlying anxiety issue.

Feel what you need to feel Adam. I know when I've had to face a few medical things in my life I was afraid also. It's hard not to be.

Continue to take your meds as prescribed.

Keep talking about your fears. It does no good to keep them bottled up.

🐬

[Adamj in reply to Dolphin14]

Thank you Dolphin14 😊 I guess it freaks me out because I never heard of it until today and everyone around me is like what do you have never heard of that

[Dolphin14 in reply to Adamj]

I understand Adam. It's not a very well known thing. I have only run across it once in my career so it's kind of odd to know two people in private that have it.

I know the surgeon will help with your knowledge base on your personal case and that will help you explain to others. It will also answer all the unknowns you have floating around in your head.

Make a list of questions. I bet you have many. I know you said you don't have an appointment yet but now you have time to write things down. Write down your fears, it's OK to express them.

We are here for you with understanding and kindness.

🐬

[Adamj in reply to Dolphin14]

Thank you 😊

[Dolphin14 in reply to Adamj]

You are welcome. I'm here for you. Honestly I understand where you are. It's going to be ok. But, for right now you just need to be heard and accepted where you are at.

[AnxiousCanadianChic]

I was JUST like you. I found out I had it over 7 years ago and of course I researched it and freaked out. Mine was found through a cat scan following my first seizure I think(totally not related btw). My neurologist told me it’s actually more common than you think and most people only find out if they have a ct scan, mri etc. for something totally unrelated.

I am scared of soooo many things but honestly the chiari malformation is the least of my concerns (trust me when I say I researched the heck out of it). Also be aware there are 2 types too so the symptoms might be for the other kind(which I assume you don’t have unless you have spina bifida).

For about 3 months way back in 1999ish I got really bad headaches in the back of my head near the neck and I don’t know if it had anything to do with that but the headaches went away and have never come back. Trust me you’ll be fine 🙂.

[Adamj in reply to AnxiousCanadianChic]

Thank you!

[Marc787]

Hello, Choose too use your thoughts & energy too believe you are already : Ok, calm, powerful, strong, confident, healing, healed.

Worry only feeds the anxiety, fear, symptoms, body/pain.

[Adamj in reply to Marc787]

Thank you Marc I’m going to be honest I really forgot my affirmations yesterday when I found this out

[Cunosmom]

Hi Adamj, I hope you found help and answers. There are doctors who aren't familiar with Chirari Malformation.

[Justchill888]

Hey, I’m on the same boat. Found out I have Chiari Malformation and I’ve been getting symptoms. All I can say is that googling can make things worse and you’re not alone. Have faith and talk to your doctor, don’t go spiraling down with dark thoughts. 🫂