Chiari Malformation type 1

Ouch!! Yeah I know how painful it can be. I had to stop working in 2010. Sorry to hear about your other underlying conditions. Recently had cataract surgery in both eyes in January of this year. They said the cataracts can come back even with the new lenses. I also had a fluid collection in the subdural area but they never called it a hygroma; it’s on my MRIs, but until I started taking medication for my autoimmune disorder I didn’t know that was causing some of the headaches. I get all of the types of headaches. Tension, chiari, pressure, migraine, the ones in your eyeballs, etc., etc. I did have a retinal tear in the past, but it healed. I have to do every six month eye checks. And I just qualified for disability this year for chiari and all the other diagnoses that I have. Making the decision to have surgery is something only you can do and it’s very hard. You can always message me if you need some support surgery or no surgery.!

@lwoodbrey I just read the xray report from the local hospital and its got me freaked no wonder I am having headaches yet no one is doing anything

I’m saddened to hear of your troubles. I was diagnosed with DDD over 20 years ago. It has progressed to the point that I am bedridden 18-20 hours a day due to pain. The medication I’m prescribed helps me move around for approximately 1–2 hours(max) 4 times a day. They say they don’t want to provide more medication because I’ll become dependent. My life is usually misery now but at least I can still move. I’m not about to have surgery that could totally paralyze me. My prayers are with you.

these headaches are bad, I ended up at the ER and sat there for 7 hours I asked what was going on , They said they'd lost my file . anyway did nothing sent me home with a message to come back if needed . This was saturday. since then the headaches are bad. I mean bad. to the point I am willing to risk surgery. I see a family doc tomorrow with the ER reports. first time I did a couple of years ago with non stop headaches I ended up travelling for over an hour to see the ER doc at our major hospital from there I was diagnosed with chiari. This time I have to see a family doc that charges fees like ............ if he sends me to the large hospital I dont know how I will get there , the train journey is hell not just rock n roll pain with chiari but arthritis. need to take anti inflammatories but they are bad for my stomach and liver. if the illness doesnt get you the treatment will I was banned from facebook by AI for impersonation , of what or whom I dont know.

been a good day today, assume its because I slept without a pillow now I dont know what to do , do I tell my family doc and maybe see the neuro who wanted to operate last time , or do I leave it and hope the headaches dont come back , but judging by the report ( xray c/t ) I read I really wonder 🙁

I seen a video on youtube from a doctor at Duke university. She was discussing Chiari except she didnt want to use that particular term. She called it cerebellar tonsillar ectopia. A good portion of the patients that she seen ended up having a CSF leak that was causing the herniation and symptoms. Something to consider as you are looking for relief. Im sorry you are going through this. I also have a 9mm herniation with many different symptoms, Migraines, brain fog, dizziness, Harlequin syndrome, etc etc. I wish you luck in your journey for relief.

@tisme as someone who was diagnosed with Chiari Malformation and Syringomyelia I would recommend that you do mention something to your family doctor and neurosurgeon.

I had surgery 10 years ago and see my neurologist annually to be monitored. Due to the fact you have not had surgery it is important to continually monitor the condition. I journal every day my activities and how I feel physically. It helps to track any symptoms I am having whether it be caused by the amount of activity I did for the day or maybe the weather, as the barometric can affect the pressure inside the head, as I have heard from other Chiarians. The journal is brought along when I have my annual appointment with my neurologist.

I started with hand issues 15 years ago and it was determined 5 years later that what was causing the issues was a very large herniation of my cerebellum which cause a very large and severe syrinx in my spine. I was told it was not a matter of if, but when I would end up in a wheelchair having lost all use of my extremities.

I have built an excellent team of my primary provider, neurologist, orthopedic doctor, hand therapist and massage therapist to help me maintain me physically and mentally. I am very blessed that my primary provider clinic and my neurologist clinic both use the Epic system and they both can see my medical records and tests from both places. Both then should be on the same page and see what is going on with me all around. So both are well informed. There is 5 hour distance between them, but with them both having access, they are more like right across the hall from each other.

There is no cure for Chiari and even if you have surgery it is something you live with every day. Surgery is NOT a cure. It stops the progression and still needs to be monitored.

Hope I was of some help and did not scare you in any way. All the best on your journey.

Being in Australia and part of the government health system I get the feeling the neuro doesnt have time to read everything ( not tried the diary thing yet just a list of symptoms I found I think it was on the Mayo website. Good idea though I will still do the diary thing how do u split the effect of chiari with bipolar / arthritis etc ?

I’m going to add some frustrations with my finally being diagnosed with Chiari I. I have had headaches and nausea since age 8 or 9, mostly in the early hours after awakening ( my parents were told I was faking) I have had symptoms of dizziness since age 10. (She doesn’t want to go to school, again faking). Had a hard time learning at school (dual process disability). At 19 I started having the Chiari headaches in the back of my head when I laughed, strained, turned my head too fast, or in major stress. (Never heard of that). Age 20, I started having jaw clenching so severe my jaw locked up and I couldn’t open more than an inch for days til it relaxed. (You’re too old to play games). Later diagnosed TMJ. My dizziness progressed and double vision became an on and off again symptom age 24. (You work night shift. You must be sleeping with your arm over your face and don’t realize it). Age 25, I’m all over the place emotionally and had my first panic/anxiety attack. I was sent to psychiatrics. (6 total - I was noncompliant ). I was not happy being diagnosed with yes or no questions. I had access to the MS5 diagnostic book. I showed the 6th doctor the similarities between bipolar and adhd which overlap. He tested me in an unconventional way and then declared I could not be bipolar. Now I stop seeing the doctor and go on with my symptoms in silence. Age 33, my sister gets diagnosed with Chiari malformation by her neurologist and describes her symptoms after she had a car accident. Same as what I’ve been living with!! I went to the doctor who laughed at me. Age 36, I’m now living in Pennsylvania near my sister for 2 years My symptoms seem to progress. My migraines become worse. Cluster headaches begin along with heart palpitations, and other symptoms worsen with arthritis, and asthma becomes frequently associated with bronchitis. I’m diagnosed as a hypochondriac. I was sent to the cardiologist for the first time at age 38. I told him I think my issues are related to undiagnosed Chiari. He said no. I told him it’s familial. He said no. I said please rule it out, and I’ll stop and do whatever you want. 3 days later I was called and apologized to by my primary and the cardiologist. (15 mm herniation). I quit working in 2010 and that helped with my symptoms. However, things that I found through the course of my life on my own. I don’t sleep on my back, helps with my breathing. I sleep with a feather pillow in a non allergenic pillow cover, helps with neck stiffness and some headaches. I stopped eating processed foods and that helped with inflammation and my cluster headaches are less frequent, My dry eyes improved but it’s too late to help arthritis. I have 2 autoimmune processes along with poly arthritis involving neck, lower back, bilateral hands and knees, and right shoulder. So life is tough. There is so much more but I’ve written a book already. I’ve decided for me no surgery but it’s not the answer for everyone.