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Chiari Malformation Community
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Avatar universal

Mild Ectopia

Hello,

I am a nearly 30 year old male.  About 1 month ago I had symptoms that were diagnozed as a "TIA" (mini-stroke). All day long I had been suffering from moderate pain in my left arm.  Then all of a sudden the pain spread up my shoulders to my right arm.  It was more fatigue than true pain though...I would describe the pain more as numbness/discomfort.  My face went somewhat numb, and my lips felt like I'd had novacane.  My throat felt hard and even swollen (just to me internally).  My hands felt swollen to me, but not to anyone else.  I had tremors.  My balance was unsteady and I felt like I was going to faint.  My scalp tingled.  My spouse said that my accent changed and I started using words I normally would not use.  Eventually it became difficult for me to speak.  These more severe symptoms lasted for about 2 hours in total.  The numbness in my face and general fatigue lasted about 3 days.  Throughout this I had discomfort in the back of my neck, right in the middle where the head meets the back/shoulder.

I went to the ER, and they said mini-stroke.  Some doctors mentioned MS as a possibility, so I went to a neurologist who ordered an MRI.   The MRI does not mention MS (thankfully!), but does say I have a mild tonsillar ectopia of 3mm to 4mm.  

Yesterday I had mild symptoms again.  This time it was severe fatigue in my left arm.  It did occur after using a small weedeater for 10 minutes, but I'm not that out of shape!  The fatigue eventually manifested itself as a severe tremor where my left arm shook uncontrollably.  I also had some facial discomfort and some mild discomfort in the very back of my head (off and on).  I had weakness in my arms throughout the day, to the point where it was difficult to carry a 2 liter of Coke.  Weakness in the left was worse than the right.

Do these symptoms ring a bell with anyone?   Does anyone have recommendations for a Chiari specialist in or around Washington, D.C.?
10 Responses
Avatar universal
Additionally, about 1 year ago I had an episode where I had an awful pain in my shoulder.  I got out of my chair to work it out.   Walked about 20 feet, in tremendous pain, went back to my chair and asked for medical attention and passed out. I was taken to the ER in an ambulance.  EKG was fine, Echocardiagram was fine.   Doctor claimed I passed out due to dehydration.  I always questioned this because I'd never passed out before (felt faint plenty of times) and it did not explain the awful pain.  I also felt strange for 2 or 3 days after.
1823499 tn?1370093889
U need a chiari specialist. If not one available to u right now. Have dr ordr a cine mri. Sounds like u may have a csf blockage. Its called syncope when us chiarians pass out. I was doin it quite frequently with certain movements of my head and neck. I can't direct u to a specialist only let u know to seek one out..
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I can attest to the lost of upper body strength and the tremors as some of the first stages of more regular symptoms of my chiari. I know I can look back to my childhood and know I had symptoms my whole life....I worked in a retail dept. store and did much of the floor moves myself using a hand truck, but it got to the point I could no longer do it, and I had issues with my eyes....but my upper body strength was one of the first with vision changes I noticed.

Since u do have a Chiari dx, or low lying tonsils it would be best to get more testing ...such as a CINE MRI, MRI's of the thoracic and lumbar spine, testing for related issues like POTS< ICP, ehlers-danlos, sleep apnea....syringomyelia....disk issues.

We do have a list of Chiari drs for u to use to research Drs, in that area u can go to a Dr Henderson, or a Dr Rosner....u will have to travel, but I think they r the closest to u, and I think a Dr Hess.....see the list in the Health Pages  visit a few of the Drs to compare and see which one is best for u.

http://www.medhelp.org/health_pages/list?cid=186
Avatar universal
Is 3 to4mm really enough for a Chiari dx?  

I've been having strange symptoms for a few days now.  Today my memory was AWFUL all day long.  Then it cleared up this evening.  My job requires a very very good memory and the ability to think quickly.   I normally have the ability to memorize hundreds of pages of information in a short time.  This morning I had trouble remembering the conversation I just had...I could do it, but darnit I had to work at it.

Yesterday I had trouble remembering what we were planning to do next.  My wife called it "procedural memory".  I found myself taking the wrong lanes, taking the wrong roads, and just generally not being quite rite.  
620923 tn?1452919248
COMMUNITY LEADER

  Yes it is. The problem is the herniation is not Chiari, the malformation of ur skull is and too many Drs use the criteria of the herniation to determine chiari which is wrong.

U could have a retroflexed odontoid and that in itself with a very min herniation will cork u up and cause more issues then a herniation of 13mm.....

Find a true chiari specialist and read my reply in this thread -http://www.medhelp.org/posts/Chiari-Malformation/Retroflexed-odontoid--EDS--Hashimoto-thyroiditis/show/1805134
Avatar universal
So I went back to my neurologist, he said 3 to 4 mm was "clinically insignificant."  He gave me a muscle relaxer and said it was all due to tight neck muscles.  He did however order a Spine MRI.  I had the Spine MRI and it came back with a 4mm herniation.  No other problems though, other than some slightly desiccated discs.  

I have found a neurosurgeon and have made an appointment.  I sent my records over and the lady from his office said they'd probably order a CINE MRI.  

Over the last week I've had some strange symptoms.  I've generally felt down.  Had some minor pain in my arm.  Consistent pain in my neck.  Have trouble focusing, my vision is slightly out of focus.  Today everything sounded louder (like things were hitting my ear drumbs) and my computer screen looked brighter than usual.  

Any of this ring any bells for anyone?

I guess my question is, so Ig et the Cine MRI.   Then what?  What if things come back mostly normal, does that rule out Chiari as a cause?
620923 tn?1452919248
COMMUNITY LEADER

  Hi....well the CINE is to see if u have a CSF obstruction...if u do not, then u may want to have a MRI of ur thoracic and lumbar spine to rule out a syrinx, other disk issues, and tethered cord....u should also look at ICP, POTS, and ehlers-danlos as possible causes...not all with chiari r surgical candidates, but far too many Drs dismiss Chiari bcuz the herniation is not 5mm or larger when it is not the herniation that is the most important...so for now, u r taking the next step.

I would make sure u have copies of all ur MRI's and the reports so u can get a 2nd opinion.
Avatar universal
Ringing bells loud & clear.
I hope you see a true Chiari specialist; i really don't understand why, but most docs are--sadly-- clueless (and yet you may find support in the most surprising places).

I have NO herniation, yet I was nearly as sick as anyone here.  Im 3 mo post op.

A real specialist will test you for underlying conditions, require a tilt table test too, and most importantly examine you & believe your symptoms.  Your specialist will make a decision based upon his/her experience and a thorough examination (which should take at least 30 min!), not just the radiologist's report.
You may not even be a candidate for surgery.  Even some specialists wouldn't have touched someone like me.

Good luck to you; this is a tough row to hoe.   We're all willing to help.
Avatar universal
Thanks.  I obviously want to avoid surgery if possible.  Any treatments that are known to work besides surgery?

As of now I'm in a high stress job with long hours.  Are there known triggers??
620923 tn?1452919248
COMMUNITY LEADER

  We r all diff but stress is a trigger for many of us....and the more we push ourselves when we r already hurting the more pain we can end up with.....

  We do have a list of activities  to avoid in the Health Pages.....http://www.medhelp.org/health_pages/list?cid=186
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