Syrinx- Chiari?

[fmimom]

Hello,
I was hoping that someone on here could possibly help me out since I'm driving myself crazy!  I recently had an MRI of my thoracic spine and it showed that I have a syrinx at T11.  Here is what it said: "Within the central portion of the spinal cord posterior to T11 is a linear region of T2 hyperintensity which is oriented craniocaudally and measures 3.0 cm. It is intermediate on T1 signal and the signal characteristics are similar to those of adjacent CSF suggesting syrinx."  This past December, I had an MRI of my C-spine and Brain.  On the brain report it said that I have low-lying cerebellar tonsils that don't meet criteria for Chiari.  I had asked my PCP about that result and she said that lots of people have low lying cerebellar tonsils and it wasn't anything to worry about.  I haven't talked to my doctor yet about my most recent MRI results- they were ordered by my Pain Management Dr. so I'm waiting to hear from him.  But, I did talk to my son't pediatrician because my son has an arachnoid cyst and I was wondering if they could be related.  He informed me that syrinxes are very normal and common.  Is that true?  Could I actually have a Chiari malformation that caused the syrinx even though my MRI said that I have low lying cerebellar tonsils that don't meet criteria for Chiari?  I'm a little worried that my dr. won't really think much of any of these results since if he was concerend about it I think that someone would have called me as soon as they got my results and I haven't heard anything from him.  
I'm actually very hopeful that this syrinx could be the reason for the symptoms that I have that led me to get the MRI's in the first place.  I have chronic pain in my back, headaches, dizziness, vertigo, neck pain, muscle spasms, and chronic fatigue.  I have been diagnosed recently with Fibromyalgia and migraines, but I still felt as if there must be something else.  Also, over the course of the past year, I have been dealing with increasing pain in my mid-back.  It feels like I have a rod in my back there and it sometimes is even hard to breath because it is so tight and stiff.  
Any ideas or comments would be greatly appreciated.  Thanks so much!

[selmaS]

  No worries : )

Just keep in mind u r not alone <3

[fmimom]

Thanks for another helpful reply.  I'm so thankful that there is a place that I can ask questions and find out explanations to what is being said on my report.  It's like a foreign language to me!
The CINE MRI doesn't sound like something they do on base, so I don't know that I will be allowed to have one.  I will definitely look into it, though.  My son, who has an arachnoid cyst, was able to get something called a FIESTA scan done at the children's hospital, so there is hope!
I will also keep your experience with EDS on my list of things to ask a NS, when or if I see one.
Thanks again!

[selmaS]

  No, the full spine MRI they suggested is a great idea, as it will rule out a syrinx in all areas of ur spine , plus disk issues, and tethered cord.

A CINE MRI is a MRI of the Cervical spine w/wo contrast...but it is done in 2 parts, the 1st is similar to a reg MRI, but then they bring u out to inject the contrast for the 2nd part and they also add a clip to ur finger to monitor BP, this MRI is done in real time as a video, to see how ur CSF moves...to see if it pulsates with the heart beats....this may indicate an obstruction.

  As for the other conditions, I was told to consider EDS and did not think it fit me either, except for me being slow to heal and I would bruise easy......but I was dx'd with EDS some of the symptoms r not as easy to determine on our own, and all these issues should be ruled out by the Dr.

BTW I was later dx'd with EDS...I never would have imagined,....so do get checked,

[fmimom]

Selma,
Thank you so much for the welcome and the info.  Between you and irislita, I really feel that I'm on the right track with all of this.  I also looked up those onther conditions that you mentioned.  None of them seemed to apply to my symptoms, but I will make sure to discuss them with my doctor.  It was very helpful information!  I will also make sure to ask for a CINE MRI.  The radiologist that found my syrinx recommended a "screening exam of the entire spine with and without intravenous Gadolinium and with axial sequences through distal spinal cord."  That isn't the same thing as a CINE MRI is it?  As for doctors, I have been looking into it a bit and it seems like there is a very good specialist not too far away.  But, my husband is military, so if the neurosurgeon on base can take me, that is where I have to go or it isn't covered. It really stinks to not get to choose your own doctor.  I will just have to hope that if that happens the base NS knows about Chiari.  If it gets too bad, I can try the specialist that is so good with Chiari, but I will have to pay a lot out of pocket because he isn't in our network.  It is all so frustrating!  
Thanks again for your help and understanding!

[fmimom]

Irislita,
Thank you so much for your reply.  I really appreciate it! I definitely understood what you were saying, it made complete sense.  You really helped to confirm what I was thinking.  I will need to try and find someone who specializes in this, but it could be hard since I'm very limited by my insurance.  Thanks again!

[selmaS]

Hi and welcome to the Chiari forum.

As irislita mentioned, a syrinx is there as a result of an injury or a CSF obstruction...so, not a normal finding at all....and it can cause pain.

As for the low lying tonsils, not being criteria for chiari, the length of herniation does not make it chiari or not, chiari is a malformed skull, and no matter how long or short the tonsils r, if u have symptoms u should be tested with a CINE MRI, that is a CSF flow study to see if u have an obstruction of CSF.

U should also rule out other issues, like sleep apnea, disk issues, low vitamin and mineral levels,ICP,tethered cord,ehlers-danlos, as these can also cause some of the same symptoms and issues.

Not all with chiari or a syrinx r surgical candidates, but u do need a Dr that is well experienced in this field...ur PCP is reading the opinion of a radiologist, not a chiari /syringomyelia specialist....seek one for an opinion, seek 2...compare drs of the same caliber b4 u decide which is best for u...and educate urself on these issues so u can identify a good Dr, and know what questions to ask, or know what is being said to u.

Check out the list we have of Drs to do ur research to locate a few ....this list is not a referral and all may not be true chiari specialists, so u do have to research them.

If there is neway we can help, let us know .

[irislita]

Hi and welcome.a syrinx is not a normal thing and can be a big deal.its liquid filled space were normally nerve cells should be and is interacting in the spinal canal.and yes ur low lying tonsils could be a possible cause for the syrinx.when the tonsils obstruct csf flow it can come to a syrinx.so both issues can very well be related and cause all of ur symptoms.i give u one big advice.get a chiari specialist asap.they are able and educated enough to evaluate ur situation and explain whats going on.i am sorry for my english and hope u understood me.i am not a native speaker ;) keep us updated.