What do you think?

[toothdoc2012]

The past year has been a real pain - literally and figuratively.  I've been trying to finish obtaining my dental  degree plus dealing with major family issues as well as the birth of our 3rd child.  Now, 5 years ago I had to have an MRI to rule out something.  An incidental finding was noted - Chiari Malformation type 1.  Now, it was ruled out that my medical issue at the time was not related to the incidental findings.  Fast forward 5 years (today).  Over the past year, I have been having certain medical issues arise - mostly minor.  Over the past 2 months these symptoms have been occurring more frequently and more severe.  I did a search for the symptoms and tried what medical conditions fit these symptoms.  Now, there are reasonable things that could explain each symptom which is not related to Chiari type 1, but it makes no sense why they all are increasing at the same time if they aren't related to Chiari type 1.   So, since many people here have made themselves well versed in this,what do you all think?  Could these symptoms be related to the incidental finding of Arnold Chiari type 1?  Before any of you tell me, I know only a Chiari specialist can confirm. Based on what I have read, I am pretty sure they are, but before I go to a specialist and confirm this I just want to help break the ice before I have to fully accept that soon after obtaining my dental degree I will need surgery to help me continue my career.  Now,  I wasn't told how far the cerebellar tonsils are extending into the spinal canal.  I have been experiencing the following symptoms:

Pressure Headache (lower back of head with occassional shooting pain midline heading forward that feels like my brain is splitting in half))
Painful tension in neck
Extreme chronic Fatigue
Dizziness
Visual disturbances
Tingling / numbness in the extremeties
Memory loss
Restricted movement
Intolerance to bright light
Vertigo from position change or sudden standing
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Ringing in ears (like the tone heard in a hearing test)
Tingling / crawling feeling on scalp
Intolerance to loud / confusing sounds
Pain & tension along ear / jawline
Difficulty swallowing
Hand tremors
Pressure in ears / ears feel stopped up
Difficulty reading / focusing on text
Depth perception problems
Burning sensation in extremeties / shoulder blades
Fluid-like sound in ears (like water running)
Loss of sexual interest
Pressure / tightness in chest
Electric like burning sensations
Unequal pupil size
Popping / cracking sounds in neck or upper back when stretching
Sudden / abrupt changes in blood pressure due to awkward position of head
Hear heartbeat in ears
Brain fog
Pressure in back of head
Face numbness
Weakness in arms
Trouble concentrating/multi-tasking
Black-outs
Tingling of hands/feet
Trouble swallowing
Headaches when bending over
Sudden trouble spelling, finding words, train of thought
Short-term memory impairment
Shortness of breath
Irregular/strong heart beat
Chest pain
Chronic pain
Trouble working on a computer/reading for very long

So, what do you think?  I feel these are related to the Chiari finiding.  I should go to a chiari specialist -
shouldn't I?

[actressmouse]

I had many of the symptoms you listed before my chiari surgery 6 weeks ago...and I can say that a lot of my symptoms were addressed by the surgery.  Many times we go to doctors and are dismissed because they don't have the knowledge base to draw from whereas a chiari specialist sees these symptoms and knows immediately what questions to ask.  Do your homework and be prepared to be your own best advocate.  I spent 2 years researching and "interviewed" 4 doctors before making my decision.  Good luck on your journey.  :)

[Viva001]

I'm 7 wk post op and had nearly all of those symptoms, mostly gone now.
In addition to the good advice already offered, I would add to be Very careful in the shower--vertigo + BP dropping from standing in one place can be dangerous.
Best of luck to you!

[selmaS]

  Hi and welcome to the Chiari forum.

Yes, for each one u listed...as many of us have said, it is not a list of symptoms the drs go by, ours is a manifesto and far too many have the same list for them not to be chiari related.

U deff want to research Drs on our Chiari Drs list to find the right Dr for u, make sure more testing and as mentioned above updated MRI's r done as changes can occur.

U will want a Cervical spine MRI, a brain MRI w/wo contrast, a thoracic, and lumbar spine MRI , a CINE MRI, these will help rule out disk issues, tethered cord, a syrinx,u will also want testing to rule out sleep apnea, ICP, POTS, ehlers-danlos all b4 u even consider surgery as these issues can affect how u feel and heal post op.

Too often Chiari is dismissed as an incidental finding and I encourage u to read the poem at the top under the drop down menu of special announcements....

Keep in mind, the length of the herniation is not the most concerning, but the width and if it is creating an obstruction of CSF. This along with over crowding can cause most of our issues.

Drs did not get much time learning about Chiari in med school, so to them it is an incidental finding and they have no idea what to do , so they sweep it and u under the rug....or send u from Dr to Dr to deal with all the individual symptoms and u get no where, we call this the Royal Chiari Runaround....sigh....

Ur profile does not indicate where u r located, so do be advised, u may need to travel to get to a chiari specialist.

We r here to help ne way we can.

And know, u r not alone : )

[irislita]

Ur symptoms can be very well be chiari related!!!!is almost textbook like.u need to find a true specialist as most doctors believe it cannot affect us or we were born with it so no problem.kerp us updated on ur journey.

[Sexybare]

Hi, welcome. My name is Dana. And yes you need current mris and send them to chiari specialist. Full spine mris and cine flow study. Chiari is def life changing. I have had many symptoms as I was growing up but thought it was normal, for I knew no different. Its hard to cope with. I had surgery last aug by a reg ns and in april sought out second opinion from true chiari specialist and am headin for second surgery aug 20th. So please find a specialist. I didn't find this forum til after my surgery, my first ns told me not to research it, for it would only scare me. I did research it tho, but not as well as I should. You have come to the right spot for support and thoughts.