Does this sound/look like Chiari?

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Hello!

I've (25 y/o male) been dealing with quite a few unexplained neurological symptoms since the end of May of this year. I haven't received any answer(s) as to what would explain all of them, and I'm getting quite frustrated. There hasn't been a single day where I've felt normal since all of this began. 

One day at work, I suddenly felt a dizzy/rocking sensation (I work a desk job). Later that day I began to experience dull headaches with head pressure that would be mostly absent in the morning and would get worse throughout the day. The head pressure and dizziness was made much worse when I attempted to exercise (especially weight lifting). These symptoms lasted for about a week and a half before things really started to go downhill. I've experienced the following since then:

-Pressure and occasional pain in the back and sides of my head, as well as my neck. Most of the time, I get relief from this by lying down, but it comes back after being upright for several minutes.

-Head feels like it's too heavy for my neck

-Body wide muscle twitching

-Balance issues

-Vertigo, dizziness, and lightheadedness

-Two episodes of presyncope

-Shooting and deep aching pains down my arms. Mainly in my forearms and hands.

-Heavy, rubbery legs

-Difficulty chewing occasionally

-Subcutaneous tissue loss in hands and feet (happened fairly rapidly over three weeks)

-Occasional tremor when holding objects

-Tingling and burning sensations in my feet, hands, and occasionally around lips

-Woke up with numb left leg twice

-Blurry vision

-Ringing in ears

-Easily fatigued shoulders (I was actually unable to raise both of them for several seconds once, which was accompanied by pressure in the back of my head and neck)

-Several bouts of severe nausea

-Fatigue

-Difficulty concentrating

-Occasional loss of temperature sensation in all of my fingers simultaneously (e.g., cold water feels hot)

I've had the following imaging performed (normal, except for lumbar stenosis):

-Brain MRI (lying down)

-MRA of head and neck vessels

-MRI of cervical, thoracic, and lumbar spine 

I've also had a ton of blood tests done, all of which were normal (except for my Vitamin D, which was low). I was tested for Lyme twice. I also had an EMG/NCS, which was also normal. After the EMG/NCS came back normal, my neurologist - of course - suggested I see a psychiatrist. I'm no doctor, but I know my body well enough to know that this is not a psychological issue (my GP agrees with me). I have an appointment with a rheumatologist this week, just to rule out any autoimmune or other odd disorders. 

The reason I'm here is because I came across a case on CrowdMed that was very similar to mine. That individual ended up being diagnosed with a Chiari malformation, which raised my suspicions again (I mentioned it to my first neurologist, but she said that probably wasn't what was causing my symptoms). I'm also suspicious because the head pressure (especially because it's most often at the back of my head/base of my skull), dizziness, and cement-head sensation usually goes away after lying down, but returns after being upright (sitting or standing). 

Here are two screenshots from my brain MRI. Do my cerebellar tonsils look like they are dangling too low? I'm considering asking for an upright MRI, since my symptoms are at their worst when sitting or standing.

https://drive.google.com/open?id=0B8OzVeQ3vMX5UXdCUG1xbHpqckk

https://drive.google.com/open?id=0B8OzVeQ3vMX5MnBKUUlZNU5XTlk

Thanks for all your help!

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  • Posted

    Dear BRP,

    After reading your post, I just in tears, remembering how I suffered over  year and a half ago from EXACTLY what you wrote, I think I am worse (Sorry its not competition) as I always blacked out when sneeze, coughed or laughed, in the end..with all of those you mentioned plus kept falling I ended up unable to walk at all, I became a housebound..for a long period of time, all the medicine given would not touch nor give any relief at all although my excellent consultants (Neurologist, Osteoarthritis specialist, neurosurgeon suggested me to keep moving- but not any kind of lifting anything..not even hovering, house working etc..so I kept doing just stretching and breathing exercised supervised (as i could not walk nor stood properly)..the minute I recovering from my decompression surgery..all that you mentioned plus my symptom disappeared....2 months after surgery..i got my QUALITY LIFE BACK..SO HURRY WRITE A LETTER TO YOUR GP, MP.., NEUROLOGIST/NEUROSURGEON, HEALTH MINISTER..ANY ONE..ANY ONE THAT CAN SUPPORT YOU..GET THE DECOMPRESSION DONE..CALL Ann controy trust organisation, check with them.who can they recommend to where you are..if I were you..I dont care where I live ..I ll get my Gp to write to MR G FLINT - Neuro Surgeon based in Queen Elisabeth Hospital - Birmngham.. GOOD LUCk..

    DONT TAKE NO FOR AN ANSWER..YOUR HEALTH IS YOURS NO ONE ELSE...

    Don't leave it too late.

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    • Posted

      Glad to hear you're doing well after your surgery. It's also good to hear that there was someone else who has experienced what I'm dealing with - it helps with validating that you're not crazy! Thanks for the recommendations as well, but I live in the States! I'll keep the thread updated.

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    • Posted

      Hi there,

      if you are in state, they told me that Mayo clinic is fantastic for Chiari

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  • Posted

    I too have most of your symptoms and have been out of work for 7 months. Dizziness just hit me out of no where and I thought I was having a stroke. I haven't been the same since. I originally thought mabe inner ear because of the dizziness and movement of my head made it worse. I can not stand being upright. I too have rubber weak legs makes me feel so ill. I went to the eye doc because my vision just isn't right. He said my optic nerves are swollen. You need to see an eye doc if you haven't. This diagnoses is what got me my MRI. My MRI showed now masses but did show low lying cerebral tonsils compatible to chiari. I would post a pic but not sure how to. The neurologist said that isn't causing my symptoms he said he thinks I have IIH. Well I had a lumbar puncture and my opening pressure was normal. So here I go again searching. I too think it is something with chiari or my blood vessels because it's not abnormal headache. It's always in the back of my head. Constantly never goes not even with meds. My head feels sore when I lay the back of it on anything even a pillow. I used to work out also. Not anymore and I really miss it and everything else about the old me. Get a copy of the report from your MRI. My neurologist did not even tell me it was on there. I got the report and read it with my own eyes and that's when I found it. Doctors do not know much about it and will not mention it sometimes as they think it's irrelevant. GET your report and go from there.

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    • Posted

      Dear Melanie,

      So whats the future for you..aren't you going to ask your health care professional to refer you to Neuro surgeon?, no matter what my health care professionals done.in the end CM can only be helped with Surgery, as it is not disease its a defect just like people need : Pace maker, hip replacement etc.. I used to work for pharmaceutical company for over 15 years, I knew then any medicine can't help ..just think about a small pipe..even if you put lots of chemical it won't melt..unless you have a stick to push it down or ..unfortunately this brain herniation..(just think about you have brain size 6, but your skull size 5) so its blocking the flow..in order to repair it..the part of the brain that obstruct the flow need to be eliminated. (that was the information in plain english of what my neuro surgeon Mr Flint told me)..

      What are you going to do

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    • Posted

      Funny you mention the inner ear. . . the episode that led to my first hospital visit consisted of dizziness, followed by severe nausea and very weak legs with tingling running up and down them. I had to drop to the floor and call 911. Tests performed at the hospital showed nothing, so they figured it was an inner ear infection (labyrinthitis or vestibular neuritis). I didn't have an issue with this diagnosis until I started having tingling in my left foot and hand, along with balance issues (feeling like I was being pulled to the left or drug to the ground).

      I actually do have the report from my brain MRI and it doesn't mention it. But that's why I posted two screenshots from the coronal plane because it certainly looks like the tonsils aren't where they should be compared to the normal photos I've seen. I left a message at my GP's office to ask about an upright MRI, since that it when my symptoms really wear me down.

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    • Posted

      Well  I'm not so sure what to do but my steps are going to be this;I am going to see a neuro opthamologist then mabe second opinion from a neurologist then neuro surgeon. I want to be absolutely sure that it is the chiari causing my symptoms because as you said the only option is surgery. Scares me to death. I know everyone is different but I hear so many bad stories. Whatever is wrong with me definitely mimics a inner ear issue for sure that is why I spent 3 months going down that road. My ENT said no it's not your inner ear. Looking at your pics it prompted me to review mine today. Mine look lower than yours but yours do hang a slight bit. Mabe not enough to be considered chiari but I have heard of people with chiari type 0. I am type 1. People with type 0 can have debilitating symptoms also. It really is a odd disease. My chiari was acquired ( I didn't have it from birth) it just happened. My neurologist is not very knowledgeable on chiari. This is probably why he didn't tell me about it and probably why he hasn't sent me to a neuro surgeon. When I mention the chiari to him he says no your type 1 it doesn't get symptoms until your type 2 or 3.( lie,lie,lie). I'm not giving up. The pressure in the back of my head is unsettling and the dizzy not being able to think foggy dream like feeling is the worst symptom for me. I have most all your symptoms but this is what. Others me the most because I am usually a sharp minded person. I also live in the states! What part do you live in? I really hate the long waits to get in to see specialists. Shame on them for putting you off to anxiety. I have anxiety but it's because I'm ill and I feel like a different person. Are your symptoms constant? Mine are. Only if I lay down or sit completely still do I get relief. Do you have the side view of your brain that shows your brain? 

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    • Posted

      Hi Melanie, my first symptom was like yo, but I was scared to get it done, however after several months it got worse, I was terrified, and I could not put up with the pain and all the sensation of the symptom, I was fed up being ill and became housebound, so I finally agreed to have surgery, please believe me, my self, I did not want to have it done, because of the same reason as you are now, but what happened was I leave it too long, I think it damage my spinal nerve, I am now live my drug free life and also have my quality Life baCK HOWEVER THE DAMAGE WAS DONE TO ME (MY OWN FAULT) ENDING UP GETTING ME A BACK PAIN..but really I could cope by doing yoga each morning and plenty waters..magnesium, selenium etc...if you are in state it said though that Cleveland and Mayo are good in this field. Please do not leave it too late.chiari its not a disease its a defect that need to be done by a surgeon..you will be laughing after the surgery...
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    • Posted

      My ENT doesn't think it's an inner ear issue either, given all of the other symptoms that I have. I actually have one more ENT related test that I'm getting done next week - a Videonystagmography. Depending on the results, it may actually shed some more light on what's going on with me.

      That's why I want an MRI done in an upright position to definitively rule it out. Those are also four months old at this point and I haven't been getting better but worse. It only makes sense because my symptoms get progressively worse throughout the day or when doing something physically strenuous. I usually only get relief by lying down. My PT also performs something called a Sub-Occipital Release, which gives me longer temporary relief.

      I do have them, but I'm on my phone right now and they're on my computer.

      I live in Southeastern PA.

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  • Posted

    Hi, I feel your frustration... Took 10yrs before I had a diagnosis! And that was by accident by my spine specialist... As said, keep pushing for answers, I was passed round different departments as they didn't know what to do with me, had decompression surgery 3yrs ago , and has eased pressure headaches.. Although still have other symptoms... Hope you get some answers.. X

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    • Posted

      Dear Helen, its worried me that you had operation 3 years ago, but you still have other symptoms, what are your system...can you share with us.so what is your treatment ?
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    • Posted

      Hi Helen, glad to hear you're doing better. I've learned that if you don't have a textbook case of some illness or disorder that you're pretty much out of luck unless you really push your doctors. It's ridiculous!

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  • Posted

    Dear brp720

    Firstly my heart goes out to you. Just reading your recent medical journey is enough to make you weep.

    As a CM1 patient who had decompression surgery 8 weeks ago today, some of your symptoms are familiar. Unfortunately CM has a veritable smorgasbord of possible symptoms with only the headaches as the common link.

    So many people on these pages have similar stories of misdiagnosis from many healthcare professionals.

    I am loathe to give any guidance on the diagnosis as I am only another patient. But I would strongly recommend that you look at the Ann Conroy Trust website and look at Education, then medical professionals and ONLY book to see one of those people. You can also speak to people at the Trust who are the only charity in the UK for CM, Syringomyelia and related symptoms.

    I saw a highly rated neurologist who told me point blank my symptoms were not CM. His guidance didn't ring true to me, so I sought out alternative opinions that I found carried more value.

    This appears to be a regular theme for people as the condition is not widely known.

    Keep hold of your mental strength and your values, whatever may be happening physically, and very best to you in finding a real walking talking human being who can give you some confidence in steps to be taken to improve your health.

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    • Posted

      Hi Stable, appreciate the condolences! It has taken a toll on me mentally, but I finally think I'm taking steps in the right direction, given how many other things have been ruled out at this point. I've been told more than once that there's no way all of my symptoms are being caused by one thing, which is absurd to me (as if having several odd and different conditions that started around the same time is more likely...).

      Thanks for the recommendations. The website looks very informative, but I live in the States, so booking an appointment through them is not an option for me smile

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  • Posted

    Quick update: I met with new neurologists today and they think I have a cerebrospinal fluid leak (something I mentioned to my previous neurologist over two months ago, but was dismissed).  I'm scheduled to have an epidural blood patch tomorrow to see if that helps my symptoms.

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    • Posted

      O my goodness!!! I went to the neurologist today!! At dean mgee institute. He told me I had a possible CSF leak!!!!! I had a two hour drive and it was murder. Through this whole ordeal they had never scanned my spine. That would explain my chiari. I thought my spinal fluid was low. It was 9. My neurologist said no that's normal. So I went to the best of the best today and he said I am almost positive you have a leak. How crazy you got told the same as me on the same day! Please update on the blood patch. I'm just hoping I haven't let mine go too long. Was yours spontaneous?( not caused my accident) if I do have a leak mine is spontaneous. My neurologist had me on diamox to reduce spinal fluid because he thought I had IIH because of headaches. I have been making myself worse. I am so frustrated. Please don't forget to update on the blood patch. What if this is magic cure?

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    • Posted

      Wow, small world! There was no indication of a leak on my spinal MRIs, but as I understand it that's very common in people who have a CSF leak. Even people who have a normal opening pressure during a lumbar puncture doesn't rule out a CSF leak. They were basing it off of my symptoms and the fact that they get worse the longer I'm upright (I don't know how this didn't click with the other neurologists - incredibly frustrating to say the least. I guess they assumed I had postural anxiety and depression, ha!). I had a strong suspicion of a CSF leak back in July after reading information about it on the Cedars-Sinai website. I remember thinking, "Wow, this sounds exactly like me." I never experienced any trauma or surgery that would've caused a leak, so - if it is a leak - it would be spontaneous. I'll certainly post an update. I'm really hoping that it provides relief.

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    • Posted

      Good luck today. The neurologist I saw mentioned possible leak from my sinuses? I'm not sure . I haven't had a spine MRI. Was your spine MRI with contrast dye? Do you think it may be leaking in your sinus area? After my visit yesterday there is no doubt in my mind I have a leak. I too suspected CSF leak after typing in my symptoms but the docs just seem to dismiss it. I don't know what my next step is all I know right now is the neuro I saw yesterday just basically told me that's what he thought it was but he is not my primary neuro so he is forwarding his suspicions to my neuro . What is your secret? I seem to have to wait forever to see docs and get anything done. I have private insurance. Do you ask for scans? I have thought I need a spinal scan from the beginning and they just won't do it arggg!!!! Cheering for you today!

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    • Posted

      Hi Melanie. All of my MRIs were performed with contrast, but just because one doesn't show up on any of them doesn't mean you don't have one (I think that's the case for about half of the patients that have a CSF leak, but only show the physical symptoms). I'm just adamant on pushing my doctors to get things done and order tests. It's sad when the patient has to be the one to spark these types of thoughts in their doctors heads.

      Anyway, about the blood patch: It's not pleasant. There's no pain involved in the procedure itself, but a TON of pressure in the back and, in my case, my head and ears when they injected the blood. Not long after the procedure, I did notice a change in the clarity of my vision and how my legs felt when walking, but I had a different kind of sensation in my head (as if my brain was pushed against the front and top of my skull). The anesthesiologist said this may be a rebound hypertension headache, and that it may take up to a week to see a difference if the patch worked. So, I'm patiently waiting as a couch potato to see if it worked. If not, he said multiple patches in different locations with different amounts of blood can be performed. I'm also willing to go out of state to get proper treatment if need be. There is a doctor that specializes in spinal fluid leaks at Duke; it seems that many people have had a good experience traveling to see her.

      I'll keep the thread updated!

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    • Posted

      So glad you posted. So many people on forums get better and never return to update. Let me tell you I have been to a lot of forums in the beginning mostly vestibular ones because that's what I thought I had. I have been like this for 6 months and my anxiety is so bad. One min I was happy that I might have found a diagnoses then the next min I'm thinking what if it's something else then round and round I go. Did you have blurred vision?? You said your  visual clarity is better. It's hard to explain my vision it's not double it just is odd and different. What did your headaches feel like post patch? Mine is weird not like a traditional headache. It's always there in a mild intensity but the pressure/pain in the lower back of my head is awful. I am just so ready to get on with it! So tired of being this way. Where did they inject you? Thoracic or lumbar spine? Wishing you the best. 

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    • Posted

      Hey how are you? Last I heard you were couch bound for a bit after your patch. Any good results? My hope is that you are well or even a bit better.
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    • Posted

      Hi Melanie. So, I've had an interesting past few days...I don't really have any pressure in the back of my head anymore, but I do have some in the area between my eyebrows and the top of my nose. It's a very odd feeling. I'm able to hold my head up for much longer periods of time without having to lay down; however, my head still doesn't feel quite "right" (as you know, describing some of these sensations can be difficult - ha!). It's a sensation that's a cross between dizziness and floating, as if my head is being pulled upward or forward at times. My balance still isn't back to normal, but I'm not sure if this is due to my head or my legs (throughout this process I also learned I have lumbar stenosis at the ripe age of 25). My legs actually felt horrible two days after the blood patch, and I had to be admitted to the hospital again for observation and further testing.

      As of now, the neurologists that I saw want me to work from home, take it easy over the next couple of weeks, and up my caffeine intake. One of them said, "The one thing preventing us from making a slam dunk diagnosis (of a CSF leak) is your normal brain MRI." They suspect that is what has been responsible for my symptoms, but they don't want to attempt another blind blood patch or a lumbar puncture at the moment. 

      Do you have any updates?

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    • Posted

      I forgot to mention that they will consider doing a cisternogram depending on how I feel when I follow up with them in about a month. They want to take a more conservative approach first because a cisternogram is a pretty invasive imaging test that requires a great amount of coordination between radiologists, neurologists, and patient. I'm still considering reaching out to Duke for a consult with a nurse. 

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