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Chiari 4mm syrinx at C2

I was diagnosed with a brain MRI last week with 7.5mm herniation Chiari and a 4mm diameter syrinx starting at C2. My dictation of the scan also mentions an 11mm pineal cyst (which I've read that they leave those alone) My main concern is that it states crowding of the medulla and cerebral tonsils with virtually no CSF surrounding these structures with tight foramen magnum. Vertebrobasilar system is hypoplastic. It mentions to follow up with a neurosurgeon (I have 2 consults in the next few weeks) and C & T spine MRI to see the length of the syrinx. Anyone have these findings? Am I probably going to need decompression surgery?
9 Responses
Avatar universal
Also my symptoms are light to moderate headaches that are getting worse and increasing, anxiety, sensitivity to light, pressure feeling in head and neck, floaters in eyes and rarely see spots, stiffness in joints. I also think I'm undiagnosed with EDS
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

May I ask did you have a CINE MRI and a MRI of the thoracic and lumbar spine?

And are the Drs you have scheduled for the next few weeks true Chiari specialists?

Why do you feel you have EDS?

3 Comments
Just a regular Brain MRI with contrast so far for the headaches. My primary doesn't want to order any more tests since I'll be seeing a neuro soon. Both Dr's are specialized in Chiari. I have all the hypermobility they screen for and had terrible growing pains as a kid
I live in St. Louis so luckily there are a variety of Dr's. One is Dr. Forget with Mercy and the other is Dr. Albert Kim with BJC
I am so excited to hear from you since I've seen you been able to give a lot of people advice. Dr. Kim was referred to me by a Chiari friend that had successful surgery. My primary referred Dr. Forget. Any tips or advice is greatly appreciated! Thank you so much
620923 tn?1452915648
COMMUNITY LEADER

  The best advice that was given to me was get copies of ALL testing...educate yourself on Chiari and ALL related conditions and research your Drs...meet a few to see which is best for you.

Do not compare your symptoms or journey with others since we are all different....we may have some similarities...but we will experience this very differently.

Know you are not alone <3
Avatar universal
Thank you! I have my brain MRI on CD. I work as an X-ray tech and even the radiologists can't give me a definite answer on gauging the severity so far. I just will try to stay calm while waiting for the consults. Thank you so much for the advice and support!
620923 tn?1452915648
COMMUNITY LEADER

  The severity is not going to necessarily been seen on one MRI...you need a CINE MRI and more testing to rule out related conditions as all of those plus your symptoms will reveal how severe your Chiari is on you.
1 Comments
The first neurosurgeon consult recommended decompression surgery and said he wouldn't wait a year to do it. He also said if I have EDS it shouldn't interfere with surgery and ordered my C,T,L spine MRI's for this Friday. I have my next neurosurgeon consult in 1-2 weeks. The only geneticist I could find in STL can't get me in until March to find out about EDS.
620923 tn?1452915648
COMMUNITY LEADER

  That Dr is wrong....we have had many that had set backs after this surgery and I would say ALL of them later found out it was EDS related....

Those with EDS tend to heal slower....and may reject foreign matter...so if the dura is opened the only patch should be one made from your own tissues.

Do use the search this community to read older posts on this topic.
1 Comments
It is great that you are getting multiple opinions.  Make sure you weigh your options, get the CINE MRI  and get tested for EDS.  Surgery will probably not eliminate Syrinx issues just make them less .  
Avatar universal
I have my C,T,L spine MRI results! My syrinx goes from C2-C6/7 with 5 mm diameter. It says it takes up 50% of the cord without expanding it. Mild degenerative changes in my spine is noted (pretty sure from my un-diagnosed EDS) There is mild facet disease and mild foraminal tilting with mild foraminal stenosis bilaterally. Luckily my second neuro opinion says he&#39;s familiar with EDS (I see him this Tuesday). My first imagaing of my brain said 7.5 mm herniation and my c spine said only 4 mm...? So you guys thinking I need decompression surgery too?
1 Comments
Having surgery is something you have to decide for yourself - weighing your options.  It will not fix you, only maybe make things better.  Only you can decide what you can and cannot live with.
  
I had my surgery at Barnes Jewish Hospital.  A different surgeon than you are seeing.  It made a difference eliminating some issues but I still live with pain due to the syrinx and have nerve damage among other more minor issues.
Avatar universal
So the neuro I was really excited about said he's never heard of complications with EDS and the durapatch and assured me that all of his surgeries have been without complications...what are your Dr's you have closest to MO? I know they're not close. As of right now I have surgery Oct 6th. This weekend I had the worst headache so far. I asked the nurse to do a cine MRI, but they ordered a ct head, which was normal. Then the nurse told me Chiari was not the reason for my headache and I need to see a neurologist, which she told me have a long wait list. I'm just confused.
Avatar universal
They also had an independent genetic study going on with EDS and Chiari and WashU. They said they'll have my results in a month or two. I scored 9/9 on the beighton scale
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