symptoms and no answers

[delta74dawn]

I started having dizzy spells in March of 2015 and they have progressively gotten worse.  ENT doctor has ruled out anything to do with ears or vertigo.1st MRI showed a CM of 3mm.  I was referred to a neurosurgeon and he ordered another MRI that showed the CM to be 7mm.  Neurosurgeon didn't seem to think my issues were caused from the CM before the 2nd MRI. I don't have an appointment with the surgeon for another 2 weeks and my dizziness and balance issues have become worse since I flew on vacation. I'm also experiencing more headaches.  Is there anything I can take or do to help with these symptoms in the mean time?  Ibuprofen does nothing for the headaches and I'm tired of having this drunk feeling all the time from the dizziness.

[selmaS]

  Hi...it is not uncommon for those with Chiari to have issues with the Pituitary gland too....I have seen this with a few of our members.

The knot is also not "normal" but I would say a typical symptom many of us share.

Good luck on the 16th !

[delta74dawn]

so my CINE mri shows a minimal restriction of the CSF flow.  also my Pituitary gland has pretty much "disappeared".  I keep getting a knot in my back by my shoulder blade(is this normal?).   wondering if I will ever get any kind of relief from the headaches and dizziness. see the NS on the 16th so hope he has some answers.  

[delta74dawn]

thanks have the cd's in my possession to take with me:)

[lasel22]

Just a suggestion to get copies of your mri images because specialists don't even look at the reports.  They just want the mri.

Good luck.

[delta74dawn]

The report for the MRI that I just had done states that it is a CM and is 7mm.  I don't see the NS again until Sept 14th to find out what he has to say.  He didn't think my symptoms were caused by the CM at first because it only showed to be 3mm in my first MRI that the ENT had ordered. I had numerous tests done by the ENT and everything came back normal so i know it's not anything to do with my inner ears or vertigo.  I have been researching for a specialist that has experience with CM and i'm contacting a new one on Monday.  I don't have the MRI images but i do have the reports from them.  Hoping to find a doctor soon and get some help with these symptoms cause if the dizziness gets any worse i don't think i will be able to drive.  

[lasel22]

I've had the all day dizziness, especially over the winter months. I'm not sure if it had anything to due with the weather or that I was sent for vestibular testing (ENG, caloric testing, rotary chair) which made my symptoms horrible for weeks.  Did your ENT send you for that? I got horrible headaches during the caloric testing when lying down flat and the lady doing the test couldn't understand why.  After a while things died down and then I was sent for vestibular rehab which gave me terrible vertigo after doing the exercises which involved bending over and getting up in circular motions.  All I know is I've stopped bending over, looking down or up for any period of time and lying flat and it gradually improves.

I also get a different type of dizziness/off balance feeling the more I engage my muscles.  It like my body starts to feel like its rocking back and forth (seems like its with my heart beat) if I engage a lot of my muscles and hold it.  My NS told me that is due to compression of the posterior spinal cord and a problem with proprioception.  When that symptom gets bad I feel even more off balance.  

I went to see an ENT that specializes in dizziness and he found the chiari and then I saw neurosurgeons who claimed to specialize in it and they brushed my off since it wasn't that big.  They only measured it right down the middle to be 3-4 mm.  So for a year I was told I have anxiety problems.  It wasn't until I sent my images and a letter of my symptoms and symptom progression to two chiari doctors that lead their own clinics that i was told my chiari is actually 8 mm and very likely the cause of my symptoms.  I'm having surgery in a couple of months.

I just wanted to suggest you seek out a true specialist so you can know for sure if it could be chiari or not.  Lots of times you can send your images to a well know center and they review it for free.

Also, stress makes things a lot worse for me.  My symptoms were so bad at one point in time I was losing the ability to feel the floor properly and was scared out of my mind that whatever was happening was permanent and progressive, and doctors were telling me nothing was wrong with me.  The stress I had during those times was so intense I now know it was making my symptoms worse.  Just knowing it was chiari helped me calm down a feel a little better.

[delta74dawn]

I'm so thankful I have found this site.  I have read a lot of good info on here already and it's nice to know I'm not alone.  My dizziness is an all day thing lately and the best way to describe it to people, is I feel drunk all the time.  I will try the sleeping propped up to see if that will help my headaches in the mornings.  At this point I will try just about anything that could help.  I sent a message to the NS to see if I could take anything to help with the symptoms but I have not received an answer.  Starting to become frustrated :(

[lasel22]

my symptoms started in a very similar manner to yours.  I remember 12 years ago I started getting dizzy on airplanes (I had to travel for work).  Doctors just said I was stressed with a new job.  Things died down and I didn't have symptoms for quite some time.  I have found sleeping with my head and shoulders elevated helps the headaches and dizziness.  I used to have very bad headaches and dizziness upon getting up in the morning when I was lying flat sleeping.  Also when the dizziness and vertigo get really bad 2mg of valium helps me.

[delta74dawn]

thanks!  I do have copies of both mri's.  i'm currently looking at other NS on my provider list as the one i'm seeing now isn't a specialist in CM.  I will add flying to that long list of what not to do as I found out, it made me feel worse.  i'm trying to research as much as I can on my own about this so i'm prepared with questions to ask at my next appt.  Thank you for the info!  

[selmaS]

  Hi and welcome to the Chiari forum.

  Do you have copies of both MRI's? If not request copies as this can be a bumpy journey until you get  DX and a Dr that is well informed and experienced with not only Chiari but ALL related conditions as they can cause many if not the same symptoms as Chiari.

There is a list of activities to avoid when DX'd with Chiari or Syringomyelia....but you should keep a journal as to which activities affect you.....we are all different and will experience this journey differently.

The subject no one wants to hear about, but chiari and syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. You will find people with these conditions who  continue to do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:

NO neck stressing activities, such as roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent ect.. Anything that “jars” your head and/or spine is a definite no-no.

NO neck stressing sports, such as water skiing, snow skiing, snow boarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football ect (Just trying to cover all the basics – you get the idea.)

NO contact sports.

NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)

NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.

NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.

NO moving around in the dark!

NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.

NO twisting your spine – try to keep a good posture with your spine lined up and straight.

NO bending over. lower yourself to the floor by bending your knees – not your back.

NO sudden spinal/neck movements.

NO using the hair wash sink at the hair salon.Instead ask for the special try that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.

NO Lifting more than 15 lbs when strength training or backpacking.Heavy lifting is generally not recommended especially if you have a syrinx.

AVOID sleeping in a head down position.

Avoid cervical traction.

Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.

AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.

AVOID food with too much salt.Especially for woman during their premenstrual period.

DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.

DON’T try to keep commitments when you’re feeling badly. Listen to your body.


AVOID sleeping in a head down position.

Avoid cervical traction.

Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.

AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.

AVOID food with too much salt.Especially for woman during their premenstrual period.

DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.

DON’T try to keep commitments when you’re feeling badly. Listen to your body.

-If surgery is suggested, asked which type they do, and why.....ie- endoscopy, bony decompression, or PFD w/duraplasty and what kind of patch is used.


-after surgery, how often will you be seen by the dr for follow up visits, MRI's ect..

-is everyone in the OR covered by your insurance, ask for their names and contact( check this with your insurance comp)

-if you traveled to your NS, how long after you are released from the hospital, does he need you to stay in the area.


-when scheduling surgery, ask about local "houses" that you and your family can stay at lower rates.
ie- WI- Kathy's House- see our links page for more info.
TCI in NY has Variety House- see links page for more info

-will the Dr check you for related conditions like tethered cord, syringomyelia(syrinx) or Ehlers-Danlos (rejection issues)

-what % of benefits does the Dr feel you should get from having surgery

-if you are not a surgical candidate at this time, ask what treatment options are available, Pain Management, meds, ect...and how often you will be monitored, via a visit or MRI.

-ask if the NS can refer you to a good Neurologist in your area that understands chiari.