Chiari Malformation Community
Dizziness, loss of balance, nausea, noise in ear
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Dizziness, loss of balance, nausea, noise in ear

I’ve experience dizzy spells for the last 15 years; perhaps less than 10 attacks from 1997. I’ve had noise in the ear and plugged ear always the same one ear. I had multiple ear infections in childhood and have had a few head traumas.
In 2004, I had a MRI show 5 bulging discs in my low back. L1-5, SI. I’ve had 2 car accidents hit on the right and left, no whiplash though.

Recently, Dec – Jan 2012 severe Vertigo 5 attacks in the last 10 weeks, the vertigo went away after the 6th week, the loss of balance has continued intermittently with an impending threat of vertigo(PTS) I've have severe neck pain, jaw pain, cranial pain, headaches.
The ENT doc(s) have determined that I have Meniere’s (hearing loss, tinnitus, and dizziness) this is based on symptoms and hearing test. They have prescribed diuretics to remove fluids. The first time I took the diuretic I had adverse effects.

Not satisfied, I pushed for an MRI. Good thing; it showed 5mm cerebellar tonsillar ectopia on horizontal MRI, vertical MRI can show much worse. The neurologist working with the ENT, said it was mild and unremarkable (typical response). CTE can considered dangerous in most of the online information that I’ve found especially if it becomes a Chiari malformation with the development of syrinx - a buildup of cerebral spinal fluid (CSF). The symptoms of CTE can be as follows: dizziness, nausea, hearing problems, ear problems, and loss of balance, head and neck pain, pressure in head (cranial).

Now I have been reading about Occipital Neuralgia and the symptoms, which include dizziness. I’m getting confused, and frustrated. I’m losing hope in this effort to find the answer to my problem. I immediately improve with chiropractic adjustments; the problem is I cannot afford to go to the DC every other day.

I’m requesting a second MRI (vertical) and a second opinion to rule out (hopefully) CTE or Chiari Malformation. At this point I would choose to have a surgery in hopes of a restored heath and vigor as opposed to taking medications that are supposed to address symptoms because they can’t find the solution.

I used to be a person who went to exercise daily, I have a healthy diet, and drink plenty of water. I’ve never used recreational drugs. Drink very little alcohol. It’s really hard to feel like I’ve had a stroke or I’m debilitating. On a good day I am nausea free and almost feel normal, I feel my heart beat in my ear,it feels like my brain and eyes are delayed not tracking when I move or like I’m moving inside my head, sometimes I feel pulled to the left, like I might fall over, last night I felt like I was going have another attack of vertigo.

Can anyone on here make some suggestions?
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23 Comments Post a Comment
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

What u r describing is typical for  those with Chiari....and once u r dx'd with it u will need a true chiari specialist to help guide u to the next step.

There is more testing that u will need to see if u have a syrinx....many NS's only look to the cervical spine for them, but they can form in the thoracic and lumbar spine as well.

U also want a CINE MRI to see if u have a CSF obstruction this is what can and will cause a syrinx to form, and  increase CSF pressure.

  Scroll to the bottom of this forum to find the Health Pages link...we have many articles  that u will find helpful including a list of Drs...the list is made  of the members here Drs names...the list is not a referral, but a means to help u get started researching drs.

   "selma"
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2062559_tn?1331585542
OMG! THank you selmaS! I sure hope you are wrong but I have a feeling you're right. People don't understand, it's so intemittent, one minute I'm fine and feel clear headed the next I try to stand up and feel like I'm going to fall down. I want to exercise but afraid I might pass out. Going to the doctor right now. They better explain why my MRI show 5mm and says mild or unremarkable. Why do they keep pushing menieres? the sympotoms I described don't reflect menieres other than noise in ear and dizziness. But the loss of balance, fuzzy mind, etc. don't.

Thanks for you help :)
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620923_tn?1405964489

  That is bcuz chiari symptoms cycle and the CSF can get randomly blocked causing random issues....so the symptoms come and go and we chalk them up to other things like being over tired or the flu....

Many of the symptoms r similar to menieres and some have it as well as chiari...

Too many Drs even with a MRI showing the chiari deny that is the problem....the cerebellum is balance...and that is where chiari is, the cerebellum part of the brain.

For the majority of NS's that know chiari they use 5mm herniation to classify it as possibly being symptomatic chiari...some use it to classify it as chiari period...which to me is not correct.

U need a true chiari specialist and u will see a difference.

Also make sure u get testing to rule out related conditions.
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2062559_tn?1331585542
I went to ENT today, they said my MRI was fine. When I objected they referred me right away to an NL, who will then be able to explain why they don't think I have chiari, or tortuous vertibral artery. I will request a vertical MRI and have them look at the whole spine. This is rediculous today was like on and off with the symptoms. Tonite I have real bad neuropathy...not sure if it was becuse I ate a whole package of sea weed(sodium) or had wine....I don't think I have high blood sugar levels. my levels were 93 in November, I started up with wine again, after I have been doing so poorly. I guess I'm depressed. I have about 2 glasses  each night about 4 nights per week. seems benign engough. Thanks for you expertise and input Selma :) do you know about tortuous vetribra artieries? I have a slight scholiosis
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620923_tn?1405964489

  Hi...not sure what u mean by  tortuous vetribra arteries?

I also have slight scoliosis, but that is due in part to my tethered cord dx.....and EDS dx,  as the EDS is a connective tissue disorder that affects the joints.

  Check the spelling on that other term....
  
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2062559_tn?1331585542
tortuous vertebral artery-  compressed medula symptoms very similar to Chiari-
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620923_tn?1405964489

  From what I know about a compressed medulla...this can account for pupil dilation and fail to constrict with light....vomiting...and many with chiari may have this in addition....

And if I remember correctly I think decompression surgery is also done once a CINE MRI is done to check CSF flow....

We do have several members with kinking of the brain stem and medulla.....
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2062559_tn?1331585542
Last night, while sitting at the computer, I had a slight sensation that I was about to go into a spin. I kept looking straight and it never happpened. What did happen was I became very nauseated and clammy. I took an Ibuprophin and went on with dinner and a glass of wine. What's troublin me is that I was sick all night with nausea and bad headache centered at the back of my head/neck about  2 inches below the skull dead center of my neck. I just went to the chiropractor on sat, so I know my neck is clear from any kind of blockages with regard to sublexations. My point is that this must be coming from something else inside me, I think it is a blockage of CSF. I live(temporailly) with cats and I'm highly alergic (allergic), is it possible that this has been triggered by the plugged sinuses and allergy? still waiting to hear when my appointment with the neurology will be. Sorry about the spelling a bad writing, I get tire and can't focus when I go through this. This is so troubling because I have about 20 yrs to go with work and don't know how I will be able to secure a job and make enough to live. Just want to give up sometimes. This pressure in my head and front of my head betweent the eyes is horrible.!
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1925822_tn?1333709217
Dont go to chiropratic with chiarians...it can make it worse...honestly!!! What u describe sounds like chiari...its horrible as u know there is something wrong up there.i am 28 and dont know if i ever will be Able to work again...too sad
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2062559_tn?1331585542
I'm not sure what part of chiropractic you are referring to...they have as much or more education as MDs. the point of departure is the point where pharmacology comes in. I do hope I don't have it, my MRI show a small amount of ectopia, but I havn't had the rest of my spine looked at for syrinx yet. I do get a rush to my head when I get up out of my car the hurts and affects my vision so, I'm wondering if that might be CSF coming up my spine. I also have 5 bulging discs in my lower back.

Thanks your reply. I'm sorry to hear about your plight :(
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620923_tn?1405964489

  Hi...she is right, those  of us dx'd with chiari r told to avoid manual manipulation of out neck...unless ur Chiropractor is well aware of chiari and all it entails, u should not let him/her touch u.


  Until u have ur dx and get teh rest of ur MRI's avoid the chiro....I used to go b4 my dx and I agree they can be very helpful...but in this area I would not agree.

  JMHO
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2062559_tn?1331585542
Ok, will definitely consider that. This is a whole new experience for me...and it is not going away. It doesn't seem like menieres to me. It's been going on like this for 12 weeks
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620923_tn?1405964489

  I sent a link to a conference of NS's and geneticists talking about y those that had PFD surgery do not get better...and some needing the fusion surgery and y, then they talk about chiropractors and y this is not a good idea for those with these issues....

Chiari, syrinx, retroflexed odontoid, and EDS.

  
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2062559_tn?1331585542
thank you. Selma, can you tell me what your symptoms are like for you? how did they start and what did they evolve into?

thanks,
Verseman
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2062559_tn?1331585542
irislita,
can you tell me what your symptoms are like for you with regard to chiari? how did they start and what did they evolve into?

Thanks
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620923_tn?1405964489

  I had symptoms my whole life...I can remember being a child and having what I was being told was "growing pains"...HA's, drop attacks (didn't know what they were then) and I avoided certain activities bcuz how they made me  feel.....

but, it was an increase in HA's, neck stiffness, lower back pain, IBS, vertigo, and then one really bad drop attack that resulted in injuries that required surgery that I had had enuff and push yet again for a dx.

   I went to Drs all my life and never was told nething except migraines, stress, anxiety...etc...

  many of us fall into that category....and it can take yrs to get a dx if u keep going back to the same drs....

  
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Avatar_f_tn
Hi & welcome! I can relate to your situation. I have similar dizziness/vertigo problems. They began when I was a young child and for years it was dismissed as "vertigo" I literally gave up on seeing doctors about it when I was in high school.  2 years ago, at age 41, I have a major, serious bout of it.  My primary treated me for Meniere's, and we tried the diuretic thing. Nothing...tried Antivert- nothing.He referred me to an ENT who ruled out inner ear issues and he sent me to get an MRI and thank God, there was my diagnosis.  Not that I wanted a brain problem, but at least it was an answer!!! My herniation was "greater than 15 mm", and I had a CINE MRI done which showed interruption in the flow of the CSF. I also have kinking of the brain stem.
I had the brain decompression surgery almost 2 years ago.  So far-knock on wood-no major episodes but my symptoms are returning.  I still have the "about to get dizzy" feelings often.
Selma is a wonderful resource!!! Her advice is always spot on. Yes, chiropractors are a big no-no for us. You'll find as you read the postings here that so many people, doctors and even neurologists are not familiar with Chiari, it is amazing.  Some of the people on this forum are FAR more educated on the topic than alot of medical professionals. You can learn alot here as well as find people who understand & can empathize. Good luck to you!
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1925822_tn?1333709217
Hi...as selma said i had symptoms all my life...ha,feeling dizzy,light sensitive and avoiding things that move fast...i always had a strange gait and my twin sister calls me little penguin. Well than last year i had a dramatical change...i got so dizzy,heart palpulations,blurry vision,muscle spasm,the ground under my feet feels bouncing,non stop migraine,electric feel all over my body...i cant take lifts,flights anymore...they will leave my body in a mess,i am off balance...my gait got really bad...i have ataxia my legs feel deattached...neck and ear pain...breathing issues and extremly tired,losing orientation...well i think i even left things...but these symptoms developed in 2months!!!! Its crazy and meanwhile i went to chiro and believe me i feel it made everything worse.i hope you have good doctors...i dont and thats the worse
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2062559_tn?1331585542
I'm sorry to hear about your problems...sounds aweful.  I've found that this has dampend my spirit quite a bit even on a low level...I've had people tell me that I'm depressed and need meds...I think it's the low level nausea that is with me at least 60 percent of my life these days and occasionally almost all the time. Who can be optimistic in times like that?  recently (last week) I've had post nasal drip...plugged nose and agrivated ears...who knows? do I have some kind of allergry to the cats I live with, often times my symptoms improve when I leave. Somthing that is always present when I go online are these waves of floating generated by my eyes on the screen, accompanied by waves of nausea...yeah fun times!
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2062559_tn?1331585542
I'm so sorry to hear about the things you've had to endure..sound horrific! I trust chiros much more than some ENT who can't even bother to touch me, at least my chiros can see my painful areas just by looking and seeing patterns and touching. I have pains and issues with hips, all over my body, I used to be a UPS driver..my chiros use blocking and drop table adjustments which are the equivlelent to a few pounds force, the same about of force used in pediactric care. I just don't take meds...I don't get how meds can change something inside a body any way, other than reduce some swelling. So when the ent, barely looks in my ear and says you have menires...That really sets me off.
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2062559_tn?1331585542
sorry, this is what I mean to say-
thats what I get from MD's they listen to symptoms, write things down, start writing rx's..INSTEAD,.do some tests, show me the results, show me options, don't just give me meds that have all kinds of side effects that I get to deal with later...
.
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620923_tn?1405964489

  I hear u, but when u have chiari the possible damage that can be done by the  manipulation is not worth it, if I did not have chiari and EDS I would go to a chiro all the time as I do know they look at the body in a diff way.

Did u view the video clip?
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2062559_tn?1331585542
yes insteresting and scary
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