Just diagnosed a couple of days ago with chiari 1 (8mm?). I don’t know much more than that. My doctor had to look it up, told me I would probably never have symptoms, and not to worry about it. I had been seeing him for head pressure, weird feelings in my face, headaches, memory problems, and a tingly arm. All of this has been going on for less than 2 years, headaches only consistent for a month. I am now convinced that this is the cause of my symptoms, and will be seeing a doctor with more experience soon.
I’m looking for some hope that I can still live the life I want. I want to work, travel, raise a family, and not be a grumpy burden on my partner from the pain. My boyfriend thinks I will be okay even if I need surgery, and has been very supportive. I’m scared I won’t be able to be a functional mom or even have a normal sex life if this progresses.
Is it possible to have mild symptoms without progression? Is it possible to have surgery and never have symptoms again? All I want to do now is cry. I’ve been taking ibuprofen and fioricet for pain, and Xanax for panic. Just started Zoloft for ‘migraines’ and anxiety. Xanax makes me feel better than anything, can tension be making it worse? Sorry for the lengthy post…I know I am blessed to just have minor pain and annoyances, and hopefully have options in the future.
Stress can definitely make the symptoms worse.
As for surgery, it is only a treatment not a cure unfortunately, but surgery can be successful in limiting symptoms. I had surgery in 2011 and I went about 2-2.5 years symptom free. I’m having some recurring headaches but they aren’t as bad as they were prior to surgery.
Once you find the right medication combinations post surgery, you can life a pretty normal life. You just need to make sure you listen to your body when it tells you to slow down or to stop.
In terms of symptoms, everyone has different symptoms, my chiari is 5mm and I had every symptom, including the ‘rare’ symptoms for chiari. Whereas others who have a bigger chiari had less… the size of the chiari herniation has no bearing on severity of symptoms.
Best advice is find a doctor and neurosurgeon who specialize in chiari and go from there. And never be afraid to get 2nd, 3rd and 4th opinions if you don’t like or feel like the doctor is really understanding what you are going through.
Having a good support system, whether it’s family, a significant other or this group is definitely good idea.
I hope this helped in some way.
Good luck, feel better, and keep us posted. Xoxo
Thank you so much. It means a lot to me to get feedback from someone who understands.
You are welcome. This group is full of wonderful, super smart and understanding people who are going through this and are willing to help you understand and be there on your dark days to show you the light.
These are the kindest and most understanding people I have ever encountered, I don’t know if I would have been able to get as far as I have without this group.
We are always here for you.
Stay strong. Xoxo
Thanks for the welcome. Yes, I’ve read so much in the past few days. I’ve used the site to get ideas about doctors to see, narrowing it down to 4 in my area. I believe the next step is having a doctor order mri’s of my spine, then undergoing a sleep study to find out if I have sleep apnea? In the mean time I need to talk to my boss at my extremely physical job to find a way to make what I do easier on my body. It seems my headaches got worse when I started working more. Honestly, at my pain level right now I should just avoid the pain medicine. I take it mostly so I won’t think about it and panic, but I understand that drugs are not without side effects. I’m afraid of surgery but will do what it takes to protect my body from more damage if at all possible.
Sweetness-diagnosis can be fearful and a scary thing! But for many people, it's also justification. It's that assurance that what you're feeling is real and has a real cause. We've been through those initial stages of "holy crappola, what in the world do I do now? What is this? Why have I never heard of it? What do I need to do differently, why why why, how how how, when when, etc.
My advice is to take deep breaths. You are the same you that you were yesterday and last week. You haven't changed-even your Chiari hasn't gotten worse. Think of it just as a name for all the Weird feelings. You've had them, now they just have a name (a really weird name that 99% of the population has never heard or seen---just sayin'.)
There are some people who have 10mm+ herniations and never have any symptoms. From what I have heard from my NS, once the symptoms start, they generally have a slow progression until something stops the progression. For me, that was decompression surgery. ((A little background on me-I've never had children, never had stitches, broken bones, illness, etc. I've never had surgery, never even spent the night in a hospital. NOTHING! It was a huge deal when I had to take a pill once a day to regulate my metabolism. So I'd never had any medical treatment.)) I had the surgery on 10/24. I had a minimally invasive surgeon so recovery has been very minimal. I went back to work two weeks ago (but I have no physical requirements-mostly talking and driving.) I have had only minimal headaches (1 since surgery.) Some of my other skills are returning, but not all of them.
Definitely find a good neurosurgeon or specialist (most specialists ARE neurosurgeons.) They can walk you through your SPECIFIC pro's and con's and your specific case. You will work with him/her and decide what is the best approach and what method of treatment is best for you.
Just remember---it's just a name. It's just a label for your symptoms and hernia. Read up-make sure they are reputable sources, facebook is NOT a reputable source, neither is wikipedia either. Medical sites, support groups, other's experiences (take with a grain of salt though!) You have found a great place and will find so much support!!
Thank you! I’m starting to feel a little better about everything. Just trying to count my blessings and enjoy life while I’m in a minimal amount of pain 