Top 5 Symptoms

Hi Friends

Since we are all blessed with the wonderful Chiari, I was wondering what everyone's Top 5 Symptoms? Please shoot me a answer when anyone has a chance. Hang in there everyone and have a great day!

  1. dizziness
  2. numbness and tingling
  3. muscle weakness
  4. lack of mobility
  5. nystagmus

Muscle weekends
Stiff neck
Tingling in hands and feet

1) fatigue

2)muscle weakness

3) nausea, dizziness

4) blurred vision/noise in ears

5) Every step I take, I feel with my back of the head, not my heel.


6) sleep problems

7) problems breathing

8) Impossible to concentrate

Sorry, I got overboard.

  1. dizziness
  2. difficulty swallowing
  3. nausea
  4. back of head burning/neck pain
  5. fatigue
  6. extremity pain
  1. I feel like I’m falling backwards
  2. neck and shoulders hurt and stiff
  3. blurry vision
  4. short term memory
  5. can’t sleep
  6. breathing problems
  7. speech is sluggish
  8. can’t focus
  9. face numbness
  10. nerve twitching
    There’s more… The list is to long to list all of them.

1. severe neck pain

2. head aches

3. blurry vision/ear ringing

4. light headed/dizzyness

5. loss of balance

Before surgery
Loss of balance
Numbness in face hands feet
Tunnel vision and hearing
Post Surgery
Headaches in the back of my head
EmotionAL difficulty
Neck pain

1. Headache/neck pain (their linked)

2. Nausea

3. Confusion (like a fog cloud in my brain at times)

4. balance issues

5. Insomnia

1. Dizzy

2. Headaches

3. Exhaustion

4. Trouble walking

5. Disorientation, blurred vision, photosensitivity

  1. Back of head and neck pain
  2. Pain in throat
  3. Nerve pain
  4. Difficulty swallowing
  5. Fatigue

Yvvy, your symptoms are identical to mine… Have you had any answers or luck with the pain in throat and difficulty swallowing? I’ve had so many tests and everything comes back normal related to the throat pain and swallowing. Outside of some mild acid reflux. I can’t get a solid explainantion or any relief from this. Every doctor I see tells me that my Chiari isn’t causing the throat pain or diff. Swallowing… I’ve changed my diet and bought a Chiari water pillow. I’ve taken PPI’s for acid reflux, done speech breathing retraining therapy… And still the problem remains. I have not had decompression surgery yet as my NS says that "my symptoms aren’t severe enough for surgery yet)… No syrnx at this point. I’m sorry that you suffer with this as well and hope we can all get some relief soon!

Hi, Beaches121,
I had initially done research on Chiari I symptoms and found that many people do have difficulty swallowing and pain in their throats. I did have the decompression surgery in 2010 as my symptoms became downright scary following a tragic auto accident. (I didn’t even know I had Chairi I until then) Although I had experienced some pain in my throat previous to the accident, I chalked it up (no pun intended) to years of teaching. Some of the symptoms that have reappeared are the swallowing issues and pain in my throat. I haven’t been back to the neurosurgeon since the surgery because it will take scary symptoms for me to be willing to go through that again.

I have never heard of the Chairi water pillow. I will research this as the pain does often interfere with being able to get to sleep. Thanks for that bit of information. Exercise seems to help me and orthopedic massage. I feel your pain—literally! I hope you will be able to find relief.

Beaches121 said:
Yvvy, your symptoms are identical to mine... Have you had any answers or luck with the pain in throat and difficulty swallowing? I've had so many tests and everything comes back normal related to the throat pain and swallowing. Outside of some mild acid reflux. I can't get a solid explainantion or any relief from this. Every doctor I see tells me that my Chiari isn't causing the throat pain or diff. Swallowing.. I've changed my diet and bought a Chiari water pillow. I've taken PPI's for acid reflux, done speech breathing retraining therapy.. And still the problem remains. I have not had decompression surgery yet as my NS says that "my symptoms aren't severe enough for surgery yet).. No syrnx at this point. I'm sorry that you suffer with this as well and hope we can all get some relief soon!

From the research I've done, even if you don't have enough herniation to be considered for surgery, many patients have symptoms like difficulty swallowing. The doctors are going to look around for other reasons for your symptoms because they are not familiar with Chiari Malformation. My family doctor told me she only had one other patient with it ever.
Since Chiari is caused by your cerebellum being squished in a too small skull, there are a whole lot of areas which would be affected: fine movement, equilibrium, gait, balance, coordination, precision, accurate timing, speech articulation. Displacement of cerebrospinal fluid due to the tonsillar herniation can cause headaches, fatigue, muscle weakness, difficulty swallowing (sometimes accompanied by gagging), choking and vomiting, dizziness, nausea.
Get a second opinion. And a third if necessary. Doctors need a lot of prodding since they really don't encounter this disorder very often. Tell them to READ UP ON IT!!! Sources say it does cause difficulty swallowing!!!

Thank you both Yvvy and Lindy! I wish so very much that my doctors (I’ve seen MANY) would just believe and understand that these symptoms are 100% from chiari-- especially when I’ve been through over 10 tests in less than 9 months!! I’ll be honest, I’m so incredibly scared to get the surgery bc I have two young girls to take care of and I always fear the worst and fear that the surgery will not take my symptoms away :frowning: but on the other hand, it would be wonderful to find a doctor who I truly trust, and who belives that my symptoms are related to the Chiari. Thank you both for the responses… Until then, I continue to pray, do yoga, drink tea and keep myself busy and fighting through the pain and fatigue! Xoxo

You just have to educate those doctors. I haven't had the surgery yet, but I've heard it can be very successful. Don't let those doctors make you feel bad!!!! They are very egotistical and don't like to admit that they don't know things. Don't let anyone make you doubt your symptoms!! I had one jerk (neuro-opthalmologist) try to tell me that my visual problems were psychological!! SERIOUSLY BAD DOCTOR BEHAVIOR!! He got two very bad reviews from me!! Doctors tend to be specialists in the specific area that they are in, but don't know anything about other areas. (I have a friend from college who is a cancer doc and has no clue what Chiari is). They need to READ UP ON IT!!!

Have fun with those girls!!! I have three girls, but they are all grown up. They can be exhausting even if you don't have a rare disease!! Get lots of sleep and do things that are less tiring.

Thank you Lindy!! You have totally lifted my mood and spirits this evening! Thank you for that!! I too have been told at least 5 times that my problems are due to “anxiety” I went to therapy and even saw a psychiatrist… Who both believe that I’m anxious bc I have a condition that doctors know little about, and they are telling me that a new diagnosis like Chiari would be anxiety provoking for anyone! I just can’t believe that so many people have similar experiences with doctors and they still aren’t educated on Chiari-- neurologists seek to be the worst and this is their field!! Each and every neurologist that I’ve seen have told me it’s either migraines or anxiety causing my symptoms and to follow up with GI for my swallowing issues… Nonetheless, I will continue to pursue a good NS and get another opinion, possibly several more opinions and keep trying to educate them on their area of expertise!! Thank you again for your support… I’m going to try and keep up as best as I can with my girls and push through the exhaustion. I live for the days where I can say “I’m feeling pretty decent today” :slight_smile:

Glad to hear that!

Have you had an MRI? I totally skipped the neurologist part and told my family doc I needed a brain scan and they referred me for an MRI. So then I saw the neurosurgeon first. Then he wanted me to see the neurologist and have more tests done.

The neurologist wanted to check for vestibular disorders (hearing/balance) and other things- So I've had 3 MRI's (brain, cervical spine, thoracic spine); an angiogram (check arteries in the brain); a lumbar puncture; a tilt table test (blood pressure), a balance/hearing test, and that neuro ophthalmologist, who did all the same tests that my cataract doctor had already done. I was incensed!!! (well, as much as I can be whilst being fatigued.) So far she put me on Pamelor for headaches. (It is also an antidepressant and I called her on it to see why it's being prescribed since I'm not depressed apart from having a rare disease!! And she said it's also used for headaches.) So DON'T let them gang up on you and make you think it's all in your head!!!

Doctors, unfortunately, don't seem interested in getting educated about disorders that they rarely deal with. They only do what education they have to to keep their license. That's normal! Just don't put up with it. So many diseases have similar symptoms that it is really hard to narrow them down. Thus, having the MRI which will give you precise results. Go to a different neurosurgeon to see about the surgery. The neurologist doesn't do the surgery so they aren't going to push for it. Don't let them railroad you!!

Oh wow, you have been through your fair share of tests too!! Yes I’ve had a recent brain MRI wither contrast as well as cervical spine MRI and lumbar spine… Should probably have just gotten the whole spine. No syrnx in cervical. I’m due to get a CINE flow MRI as well. As far as other tests I’ve had bc of swallowing issues, throat pain and chest pain etc… Barium swallow, endoscopy, laryngeal scope, EKG, echocardiogram, carotid ultrasound, scan of neck/thyroid, ultrasound of abdomen, chest X-ray and boat loads of blood work. Out of all of that… They have found low vitamin D (which is normal this time of year for western PA), and mild acid reflux!! Yet nobody will say “her symptoms are from Chiari” … My doctor also gave gave me pamelor to try and I felt too groggy with it, the they tried elavil, same things happened. And too many other meds to even rattle off!! Geez, how can we all know more than these doctors?? Unbelievable! I agree with you, no more neurologists for me, I’ll stick with my pcp, who is actually more receptive, but admits she does not know enough about it. And continue with getting other opinions from new NS’s. Has the pamelor helped you?

I hate those endoscopy's. That stuff you have to drink is disgusting. I've had a load of blood work too. I've only been taking the Pamelor a week so I'm not sure how helpful it is. I have constant low grade headaches and I take the Pamelor at bed so it helps me sleep. But then I wake up at 2 am and can't get back to sleep. Fortunately, I'm not working and I only have a dog to take care of so I can sleep all day if I need to. I also have restless leg syndrome (another symptom from Chiari) and so it's hard to nap sometimes. But with kids, you can't afford to be too groggy during the day.

When I found out I had Chiari it was such a huge relief that I had some reason for all my symptoms and for symptoms I didn't even know were symptoms- (memory loss) that my husband had been giving me a hard time about ("you aren't listening" "why can't you remember anything".....). Boy did he feel guilty for picking on me. Last summer I crashed my bike 3 times. I thought something was wrong with the bike. Now I'm thinking it was me that was having balance problems. (This was before I got diagnosed).