Chiari Online Support Group

Is it the Chiari?

Hi All,

I'm not too sure where to start. My name is Tom I'm 25 years old living in Sydney Australia. I was diagnosed with Arnold Chiari malformation back in 2008 when I started to feel dreamy and off. I got a CT scan that revealed the Chiari at a length of 5-7mm, later MRI's clarified it as 5.6mm. All the doctors I saw at the time dismissed the idea of the Chiari causing my dreamy feeling saying at that length it would only cause headaches which I did not demonstrate. This dreamy state would come and go every few months until a year later when other symptoms began to appear and the dreaminess stuck around for longer periods of time, I started to get fatigue, chronic fatigue that I still have. That fatigue where you need 3+ coffees a day to keep your eyes open. Poor vision, it feels as if my left eye can barely focus amplifying the dreamy feeling, pins and needles in my fingers and on and off sleep apnea. I also have chronic tightness in my upper traps and neck. The one thing that is not consistent is the headaches, I get a migraine once every month or two but it generally originates around my left eye and not the base of my skull. A year ago I saw the "leading" chiari specialist in Sydney who had me undergo a Cine MRI in which I demonstrated unimpacted CSF flow, the specialist once again confirmed he highly doubted it was the Chiari and didn't volunteer any other options for what it could be when I asked. He shrugged his shoulders and off I went to pay another useless doctors bill.

Running out of options I went to see my mothers immunologist(She has a form of systematic lupus) to undergo a zillion tubes of blood to see if anything showed up.. Nothing. Nuclear white blood cell scans.. Nothing. Endoscopy... Nothing. Growing tired of the tests I checked myself out of hospital and decided to continue putting up with the symptoms until I thought of another to approach it.

I don't know if this is common, to have these symptoms and not painful headaches at the base of my skull? I don't know if anyone can recommend anything I should look into, or any doctors in Sydney. Over the past few years every time I save some money it goes to doctors bills and to no avail, I'm tired and down. I have spent years trying to put up with it and get on with my life but there are days when its just too much and I feel pathetic in even saying it.

Thanks all and sorry for the mopey story,

Tom

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Tom, you are not mopey! Agree with Abby, and there are also other factors to consider…(after reading your story I’m thinking vitamin d- high daily doses and the other supplements). I will attach an earlier post I do for most “newly” diagnosed. I know you are not new but just in case…

There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.

Vitamin d deficiency (high daily doses of D3 can help with symptoms)

Magnesium deficiency (non-citrate magnesium daily)

Vitamin Bs deficiencies

Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.

Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.

Dysautonomia- Dinet.org (this is a big one for anyone with brainstem issues!)

Tethered cord syndrome

Sleep apnea- dangerous, especially if Cranio cervical instability is involved

I am glad you found us,
Jenn

Hi All

Thank you for all of your kind words and support! I have found an AO Chiro near my work and will give it a go! I have attached an image of my latest MRI as well. I’m now looking forward to seeing how the Atlas Orthogonal treatment works and will let you all know!
135-image.jpg (123 KB)

Hey Tom!

I just want to acknowledge how hard and challenging this issue can be. Don't minimize your feelings by saying you are "mopey." The truth is that when a person is suffering and they are unsure of what the issue is, it causes a lot of worry and frustration.

It took doctors five years to do an MRI to figure our my chiari malformation issue. I was in a doctoral program and enjoying my career a lot at the age of 28. Then, my headaches came on and my kidneys were failing due to all of the ibuprofen I was taking.

To make a long story short, I realized how most initial doctors I encountered minimized my experience and could not explain most of my symptoms. I still have a clear block of CSF flow in my posterior fossa based on a CINE MRI. However, my worst symptoms are fainting spells and nerve pain on the right side of my neck that is excruciating at times.
I also lean to the right and also have vision issues.

They finally sent me to the Mayo clinic in Arizona, and the team there was amazing!!! They assisted me in understanding how the serious double roll over accident I survived when I was sixteen left my top vertebrae out of alignment and this also explained the nerve issues they called occipital neuralgia.

The initial docs were so focused on the CSF issue that they completely ignored the real symptoms driving me crazy, and the MRI could not explain those symptoms. Because the MRI didn't prove some of my symptoms, they basically ignored them until I went to the Mayo clinic.

I strongly recommend not giving up on the process and to stay engaged with the process. Doctors are learning more and more every day, and I think the idea that CSF flow is the only clinical indicator of an impacted chiari is fading in most of the clinical literature. There seems to be a willingness and openness to explore how this structural malformation impacts the whole nervous system.

I want you to know that I believe you and I hope that you find a doctor who can explore a more holistic assessment of your issue and examine your history around possible neck whiplash. There is a great discussion forum that is recent that describes a current study that examined how when a person is standing, the CSF flow is more greatly impacted. Most MRI's are done with a person supine so knowing this is critical for you.

You may want to take this study to a doctor and have them do a standing MRI. Please know this forum is about being honest and sharing your feelings with this journey. Don't be hard on yourself. This is a challenging journey, and I want you tonhear me say one more time:

I believe you.

Peace, Brian

Wow thanks! You have provided me with more information than any of the doctors I have visited!

It makes me wonder if any of my past sports had an impact on my condition. I played Rugby from the ages of 7 to 18 and boxed from 18-20. I also had a few car accidents after 17 that may have played a part!

I don’t notice any difference from bending my head, the only noticable thing was when the symptoms first appeared. The first 15 minutes or so after getting out of bed in the morning I would be symptom free, then the dreaminess would begin. I also have bad posture with a noticeable forward head position.

I should also mention that during those years in rugby I was knocked unconscious twice quite badly around the ages of 16… My kids will definitely be playing a different sport!!

Hi tom! im from Australia but im from nsw I to had to see specialists in Sydney.I have a had cranial decompression surgery and c1 laminectomy in Newcastle im also 25 :joy:.I understand the struggle with the fatigue and all I can say is even after surgery im still doing test after test after test.The only thing that sorta helped me look at this from a different perspective is knowing that “our sculls are malformed” and even after surgery they still are malformed Its been nearly 2 years after my op and I am still adjusting I honestly don’t think I will ever be the same or have the same energy as before my disease this is because our bodies function differently and much slower.The best thing you can do is be kind to yourself take a nap if you need to its frustrating when you have loads to do and I know myself I ask myself this everyday ''Im 25 I should not feel like this or be this tired".But the reality is I need to stop rest and accept where I am in that moment.You are not pathetic you are a person who is tired of medical bills,tired of feeling like shit and just overall tired.If you want to talk to a specialist in Australia that is worth his weight in gold “professer Stoodley” is the way to go he is at the Macquarie neurosurgery clinic in Sydney near the Macquarie university.He charges a bit but he doesn’t mess around.Also its tempting I know! I have been there and coffee seems to be the solution temporarily but coffee makes everything 100x more frustrating it makes anxiety worse that and sodium steer clear even if you can barely hold your head up.Dont worry I feel like this mostly everyday I think its something that I have come to accept and relise that there are just some things in life that are beyond our control no matter what we try.Hope things get easier for you.and I am sorry this is happening to you because it really does suck!.

Hello this is my first post here. You mentioned the dreamy feeling ect. If you read my profile I recently went the the ER here in east tx because my wife freaked out when i had one eye way more dialated than the other. I went to the hospital and they did a CT Scan. He asked me if i was on any medication and i told him i take adderal. Which i take because its just really hard to find energy or motivation to get up and do anything, even when taking it but it does give a initial burst of energy. He then ordered a CT scan and a specialist said on the report “Questionable cerebellar tonsillar ectopia” which from what i gather is C. Malformation. Ive put off going to a doctor because i got laid off and lost insurance. But the dreamy feeling pain in the base of my skull / weird squishy sound and pain when i look down or up too long have not gone away. I have been in a wreck where my head shattered the windshield but that was a long time ago. I also have memory problems, like forgetting where i put my keys ect. My wife doesnt really understand and brushes it off. But its so frustrating dealibg with all this i feel like im literally going crazy.the NS lady told me id have to find a primary care doctor, then get reffered. Im at the point where id almost rather just pretend it isnt happening then jump through hoops just to find out if it is in fact CM.