Help

[Thelp]

I am new to the forum and I would just like to know more information about having a syrinx.  The doctors I have seen so far think that the symptoms I have do not relate to the syrinx found last week in a MRI.  They also do not think it is related to my car accident.  I have shooting pain down my left arm that leads into my middle finger.  My left shoulder constantly hurts and when people touch it I can feel the pressure but not the touch (numbness).  I have constant neck aches and throbbing headaches.  On occasion earaches.  All of my symptoms are on the left side of my body.  I sometimes have pain in my left leg as well.  The neurosurgeon in my home town said, " He does not know where the syrinx came from, it is an unknown case".  He knows it is not the congenital form because the chairi malformation is not in my brain and he said it is not due to the accident.  He also feels that all of my symptoms have nothing to do with the syrinx.  

The neurologist that I saw yesterday put me on two different pain medications for migraines.  She also does not believe my symptoms are related to the syrinx.  Both the neurosurgeon and the neurologist said it should only affect my legs and there should not be pain but numbness. This contradicts lot of the information I have read.

My accident was almost two years ago.  I was the 1st car in a 3 car rearend accident and I believe the lady in the middle had her foot off the brake because she hit me pretty good and I instantly hurt.  After the chiropractors got rid of my neck pain I noticed the shoulder pain more.  My symptoms keep getting worse and I do not know what to do.  I am thinking about having all of my medical information sent to UW and Harborview Medical Hospital in Seattle for a second opinion.

My syrinx is 0.6 cm in diameter and 8.1 cm in length.  It approximately expands T4 to T8.  Could someone please help me.

[*Stormy*]

A good idea is to google "MRI pictures of Chiari" and then you will have something to compare with. A lot of them show a Chiari pic beside a normal one for comparison.

Carolyn

[selmaS]

Hi...sorry PM= pain management
PT= Physical therapy

We do have a Health page with all our abbreviations we use.Sorry for the confusion

[Thelp]

What is PM and PT?  Is PT? Physical Therapy?  Thanks to everyone for the information.

[Thelp]

I did ask for copies of my MRI and I have them.  I was going to look at the images of my brain and cervical spine to just double check that there is no Chiari.  Thanks.

[*Stormy*]

Hello and welcome to the forum,

Hmmm.. that's interesting...I had all the pain and problems you are describing but they never found a syrinx, just Chiari..

I would definitely say that the syrinx is causing those problems though..and the others are right about going for another opinion with a specialist.

I am wondering if it's possible that you could be one of those people with Chiari 0...there is no herniation but the cerebrum is crowded against the back of the skull cutting of the CSF flow. If so, it could have been missed, heck Chiari 1 could have been missed too, mine was (but they weren't looking for it).
Do you have copies of the MRI pics and the report? If not, I would ask for them, it is your right.

Good luck,
Carolyn

[shanmomof3]

Hi and welcome to the group! I would definately get another opinion!!! In my opinion, these drs are not the right ones for you if they dont think the syrinx is causing your symptoms! And like already said you will most likely need to see a chiari specialist because they also treat syringiomylia (sp?) Blessings and good luck! Shannon

[Spaceystac]

Welcome to the forum! I am in Spokane WA, sorry to hear you to have a syrinx. Mine is 1.5 mm in diameter and goes from my c3 to t1 but I havnt had a thoracic spine MRI. And mine was not caused by a accident, Im still trying to figure that one out.

I think sending your records for a second opinion is a good idea. Make sure you find someone who is experienced in syrinx's and they often specialize in Chairi as well as Syringomyelia. Richard Ellenbogen is the doctor I sent my records to. I get to see him later this month, so they are relatively fast. It is Harborview neuroscience.     Stacey

[selmaS]

HI and welcome to the Chiari forum.

Many with a syrinx that is congenital  may also have chiari....and the syrinx is a result of a blockage of CSF  flow.....however, if u do not have chiari and were in an accident it is possible that u have an acquired syrinx...they tend to develop in the area of the injury.

The best advice I can give u is to find a chiari specialist that uses ur insurance to get a full assessment of ur condition...chiari drs also treat syringomyelia as the 2 r related conditions.From reading a little on a syrinx, it is left alone unless it is impinging the spinal cord.....and has to be a certain size b4 they can even consider a stint or a shunt.......PM and PT are the 2 things most likely suggested.

We do have a thread of drs that members have listed .....they still need to be researched by u b4 u select one that is right for u.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

I am happy to welcome u to our little family here but sorry the reasons u had to seek us out.

"selma"