1679858 tn?1346765181

Dizziness - new symptom


Recently, I have been feeling dizziness (wooziness). I feel it when I lay down at night, or when I sit back on the couch. I usually feel better when upright. Lately, I've noticed that, after very little activity, like gardening for ten or fifteen minutes, I feel exhausted. With this exhaustion, I can experience aching down my spine, along with neck ache and stiffness. My ears fill up with pressure and I feel the dizziness coming on. I also get vertigo, which also seems to flare when these other symptoms are present. The vertigo is felt most often when laying down. I only have to turn my head slightly off centre and I feel the wave of dizziness starting.  I don't get the headaches from straining.

I have had practically every test imaginable, yet nothing, besides the 11mm herniation has been found. There is no csf obstruction -- the flow is good.

Are there related conditions that can cause the dizziness and vertigo? Is there a specific test that can help understand the cause of the dizziness? (I just had a brain stem nerve test which didn't show a problem).

My NU thinks I have an anxiety disorder. I won't deny that I have had much anxiety, but I don't believe that anxiety symptoms worsen with activity!?!

Just wanted to vent. I have nowhere else to turn. I don't see my NU for another year.  I appreciate your input!
7 Responses
Avatar universal
I had similar symptoms to yours and was told the same thing by many neurologists and neurosurgeons, that it was anxiety.  it wasn't until I saw a real chiari specialist that he knew it was coming from the chiari.  I had vertigo/dizziness that would worsen when lying down and that has improved greatly since surgery.  Before surgery for over a year I could not sleep laying flat or I would be a mess in the morning and I would feel like I was rocking and floating.  this is not an issue anymore.  I also had a cine flow study done and it was found to be normal.  However during the surgery when he used Doppler ultrasound to look at the flow before opening the dura it was noted to be restricted.  I think the flow studies don't always show the whole picture.
Thanks lasel22,

I know this is chiari. It's taken this long to be sure (five years). I don't believe I need the surgery yet, but it is a big concern that very few doctors understand this condition. I guess I'll just limit my activity and hope for the best!! Thanks again!!
Hi lasel,

What was the basis for your operation if the tests weren't showing your symptoms?

620923 tn?1452915648

  Hi so sorry you are having these issues....I use to have the vertigo which was worse when laying down too....but I also had it when upright and I had to get up from my desk at work and turn to the right to get something on the left side of my desk all to avoid making the vertigo worse....turning left really seemed to have an effect on on it for me.

There are related conditions that could be causing your issues....POTS, ICP, CCI,retroflexed odontoid, compression of the brain stem....

When was your last MRI?
Hi Selma,

My last MRI was November/15. It was done at the top hospital here in Toronto. Nothing on my testing shows a thing. They all think I'm causing these symptoms myself. I believe they did a flow study as at one point I they put something on my finger to check pressure (half way through MRI).  I can feel pressure in my neck and upper back right now. Awoke with neck pain. It often gets a little better after I get up and move around. I'm not on any meds (just to let you know the degree of 'ache' I'm talking about) but it is all new and developing for me and pretty scary when doctors can't see a cause. I will probably Gran an advil muscle in a moment :(
Avatar universal
Some docs only consider operating if flow is obstructed. I don't thing this is always right, I'd be interested to see if you have brainstem compression/kinking. My flow was obstructed but the decision to operate was made most on the fact my brainstem was practically crushed.
620923 tn?1452915648

  I agree some Drs only look for an obstruction to CSF flow....but things like brain stem compression will or should throw red flags....some Drs are not looking at these other areas to see how they too are being affected....just as some do not look to the brain stem, some do not look at the odontoid...or for Baslar invagnation....EDS...sleep apnea....I could go on...

We need Drs to help us once we have had surgery....the only ones that know about all the related conditions are the surgeons and they release us and we are on our own once we are fully recovered from the procedure....
Is brain stem compression the same as the herniation pushing down? If they see good flow around the base of the herniation, could I still have brainstorm compression?
Avatar universal
Hi lynnbrook,
I guess you mean why was I operated on if my cine flow study came back normal?  My doctor recognized that my symptoms were chiari related after I went through how my symptoms started and progressed and what activities caused my symptoms to get worse or better.  My quality of life before surgery was very poor.  I could not take care of my family properly, all I did was get the kids on and off the bus and was pretty much in bed or on the couch otherwise.  I do believe surgeons look at that before deciding to operate.  I also investigated every other problem this could possibly be and never found a solution before meeting with my chiari specialist.

I think cine flow studies can vary depending on how it is done.  From my limited knowledge on these studies it seems like it is done on one slice of the mri and if that slice of the mri isn't where the compression is it might come back normal.  Mine was done on the midline sagittal view and was noted as  normal by the radiologist.  I often wonder if it was done slightly off to the side where my herniation was longer if it would have been normal.

I also think I remember my NS saying on an online lecture that flow is not always the issue, that the problem could be more of a mass effect problem.  I do believe I had brainstem compression.  I had bouts of sleep apnea and bad heart palpitations after a sinus surgery where I was under general anesthesia and had my neck extended for a period of time.  My symptoms were greatly exacerbated after that surgery due to the increase in compression during the time of surgery.

So, for me, it was putting the whole story together and realizing it painted the picture of chiari.  I also have the small posterior fossa which indicates chiari.  

Finding a true chiari specialist is the key.  I visited 4 neurologists and 4 neurosurgeons who claimed to specialize in chiari but weren't true chiari specialists.  They all told me it wasn't chiari and hinted that it was anxiety.

I'm doing much much better after surgery, I still have symptoms especially as I push myself to do more, but I am no longer in bed all day.  I actually did yardwork all day Saturday and sunday and have been walking 2 miles each day when I can.  Weather still plays a major role in symptom flares.  Its been nice here for 3-4 weeks and I think that is why I am feeling so well at the moment.
Hi L,

Thanks for that.  Our stories sound similar only mine has just begun. It has only been in the last few months that I've discovered how my activities are causing my symptoms. I've had a normal life up until now. I'm now 54.

It's great to hear how well you are doing and that you're able to do the things you love!

620923 tn?1452915648

  The herniation pushing down may compress the brain stem depending on where it is located....how far down it is herniated....if that makes sense...but it is possible to still have compression as the compression is not always just from the tonsils...it could be a retroflexed odontoid.
620923 tn?1452915648

  Pressed post too soon....OR baslar invagnation.
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