Chiari Online Support Group

I have lost all hope

I have been diagnosed with Chiari type 1 since 2012. I lost my jobs and now after years of seeing doctors and medications I have been brushed off. I’m constantly anxious if not panicking anymore because my way of living just keeps getting worse. The head pain, the vertigo, the visual issues. Just walking…my brain…just thinking. I can’t remember anything. I can’t organize anything anymore. I used to be so organized and now it’s like I forget everything. My husband thinks because one specialist says this, and then someone else says that… well that I’m losing my mind. They have no idea what they are talking about. I’ve been dealing with these issues years before I was diagnosed. Always thinking something was wrong with me. No one believes me anymore! And all because then I also had several kidney stones and surgeries due to them. Thennnnn pelvic pain, ovarian cyst ruptures and 3 pelvic surgeries including total hysterectomy. I’ve lost who I am. I hurt all the time. Tired of doctors. Tired of being called a hypochondriac or that I’m using my ailments as an excuse to not do as I need to. I may only have a 7mm herniation but I have no life! I have 3 kids and a husband and no life beyond my bed, pain and resentment from my husband. I guess it is unfair to him to come home after possibly even 2 weeks of being down and trying to pick up my slack. I’m so tired of pain. Being unreliable… I am just so tired. My anxiety is just 1000 times worse than it’s ever been. I’m chewing on the inside of my cheek all the time. I can’t hardly breathe. I look at all this paperwork, bill’s and reread the same stuff over and over. It’s like my brain has stopped working!!! Its been that way for a long time but just getting worse and I can’t help but feel stupid and useless anymore.

I am very sorry to hear about your situation - because it is bad but because I was also in the same spot as you (minus missing a uterus!) before surgery. After seeing many many different types of family doctors, neurologists, and specialists. My husband and I were at our wits end with no understanding and no medical help. Handfuls of anti-depressants were supposed to make things better.

You pack a lot of areas in your life that need tackling of some sort in your note, but I will put in my two cents for what it is worth.

1.Make an appointment with a neurosurgeon - preferably affiliated with a teaching hospital. Rational for an appointment should be evidence of descended cerebellar tonsils and neurological symptoms.
I am going with the understanding that surgery is what you are looking for, correct me if I am wrong.

  1. Prep yourself for the appointment.

a) Streamline what you will report by keeping your symptoms to neurological symptoms that align with what a neurosurgeon understands.

Vision problems, nystagmus, numbness, muscle weakness, hearing disturbances, vestibular problems, swallowing, weak voice, Chiari occipital head ache. If you get a headache when you don’t drink enough water, they do not need to know.

When we are hurting so bad and in so many areas of our life it is tempting to lay it all out there and “convince” a doctor. They are not going to be interested in fatigue ( too broad and non-specific for particular diseases), “women” issues, and relationship issues. Even cognitive decline is questionable to include. Doctors take a very small moment to make a decision on treatment so lead with the stuff that they care about. The neurosurgeon and referral people are not there to hold your hand so stick to the facts and the key symptoms as related to Chiari.

Be clear, be precise, and do not behave like a victim. Doctors love to blame crazy Chiari symptoms on psychological issues.

b) If possible, have a psychologist rule out major head issues that could be the cause of your difficulties. Tell the neurosurgeon that you have had psychological factors ruled out if they are starting to muse about that sort of thing.

c) bring someone with you who cleans up well, is articulate, and cares about you but is not going to cry- helpful if they know something about the medical system. Think family friend, aunt, neighbour. Now is not the time to be shy about asking for help. This is important.

Get a neurosurgeon consult, plan the visit. Hopefully it is not too long of a wait.

2 Likes

I hear you
I believe you
I dont know you but you mirror alot of my pain.
I laugh through my pain
I laugh because I never want to frown or make anyone uncomfortable.
Look at my utube Jeannette kyles utube there you will see your not alone .
I love you
I love everyone thats suffering from anything
I love you I just do Chiari1-A-enIL

Hi!
You have described what many of us with Chiari have
or did have for symptoms. You are not a hypochondriac. It took 17 years for my diagnosis in 1997. Have you had surgery? What Dr.'s. have you seen?
I just read the advice that gabby jzzy pants has given.
I agree with whst she had to say. You need a Neurosurgeon. I am not familiar with the current Dr.'s. I am sure that someone in this group.could help direct you to a Dr.
You wil be in my thoughts and prayers.

Hey, Luckycharmz, Your message breaks my heart. But, know that you are NOT alone. Chiaris is becoming a more well known infliction - but there are still lots of medical personnel who don’t know about it. Chiaris Malformation was even made into a “House” TV series episode (It was called ‘The Choice’) - and all “House” episodes are about rare and otherwise un-diagnosable medical conditions by your average doctor. So, it just takes some hunting around to find a neurosurgeon who knows Chiaris. I’ve had the decompression surgery in 2012. I had all your symptoms and more. Anxiety was the only emotion my brain could muster, and I got good and hiding it. Since surgery, I recovered 75% - which is 75% more than I had before surgery! Right now, I’m fighting a COvid-19 infection on top of the 25% re-occurring Chiari symptoms - which includes aspiration of fluids into the lungs. Does NOT help Covid recovery at all.

Beth, I’m sorry to hear that you’re dealing with being sick with Covid-19 right now. Take good care of yourself, and I hope that you have a smooth recovery.

Sharon from ModSupport

Thanks Sharon. At first, I was getting my Chiari symptoms mixed up with Covid symptoms! Both conditions cause fatigue and all-over-body pain. But, I became suspect when a deep, dry cough developed along with low-grade fever. The challenge I had being a “Chiarian,” is that my core body temperature has dropped 2 degrees since my brain stem got the permanent damage from Chiaris. Prior to Chiaris, I used to be a 98.6 normal. After 2012 decompression surgery, my core temperature has never been above 96.6. Therefore, when I started to feel Covid symptoms and the thermometer read 98.9 to 99.6, for ME, that was akin to a 100.9 - 101.0 fever. Ironically, I could not get a Covid test for nearly 2 weeks after showing symptoms because the uneducated non-medical personnel running to Covid helplines refused me a Covid test because my temp was 98.9. “No fever!” they’d say. I finally did find a medical person who believed me, got tested, and diagnosed ‘positive’ for Covid. Now - 4 weeks later, I am just now having more and more days where my temperature is back down to the 96.6 again… and inching toward feeling better.

Oh Beth, what a situation! We’re very glad that someone finally figured it out with you and that your recovery is heading in the right direction, although slowly.

Please look after yourself and stay safe. Thanks for letting us know.

Seenie and the ModSupport Team: Sharon, Merl and TJ