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Cervical Syrinx what to do?
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Cervical Syrinx what to do?

When I was 17 years old (16 years ago) I fell asleep behind the wheel and went off the highway right before a bridge.  The car landed on its nose and flipped to its roof.  I was found hours later and didn't wake up till I was in the ER getting X-rays.  My head hit the windshield and rolled to my back, actually left a crater in the windshield where my head hit.  My chest bent the steering wheel and cracked the steering column.  Just so you get the idea it was a real bad wreck.  I started getting pain in my neck when I was about 19 or 20 when I laughed a lot.  Like when you watch a funny movie and laugh a lot in a short period of time.  I had come to find out it was always when I held my breath and was straining.  Tylenol or Advil wouldn't touch the pain.  I always had to go to a room and lay down and be calm and it would generally go away in about a half hour to an hour.  When I was laughing my Mom would always tell me to breath she would say you’re holding your breath to long.  Well I never saw a Doctor for it all through my twenties and it progressively got worse.  Fast forward to age 31 my pain would hang around for 12 to 24 hours after a flare up and it seemed numerous things would make it start hurting.  I had been sleeping in a recliner for the past two years.   My neck would start hurting if I laid flat and put pressure on the upper neck – base of skull area.  I had many nights I would wake up in extreme pain holding my head and curling in the fetal position.  I and my wife decided that something was definitely wrong and that I needed to see a doctor.  On my first MRI they found a syrinx in the upper cervical region of my neck.  Well I’m now 34, I’ve had 4 MRI’s, 2 CAT scans, seen 2 neurosurgeons, now seeing a neurologists, I’ve been going to a pain management facility where I receive pain meds and I’ve had many neck injections that never helped at all and I feel like nothing has been accomplished.  One doctor thinks the syrinx is causing the pain while others think it is not.  Is there a light at the end of this tunnel?  Has anyone else experienced what I’m going through?  Where do I go from here?
8 Comments Post a Comment
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620923_tn?1436154699

  Hi and welcome to the Spinal Cord C/D forum.

WOW, that was some wreck....goodness so happy u did not have more severe issues...but I am sure u feel like u do ....

A syrinx is a cyst like cavity that fills with CSF fluid, it can occur due to an injury like u had to the neck and it can be caused by a obstruction of CSF flow....

Many times even tho u feel awful, there is not much they do for  a syrinx as they tend to be too small for a shunt or a stent, so unless u have another issue, like low lying cerebral tonsils I do not know what they  could do for u.

Have u had a brain MRI too?

A CINE MRI?

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Avatar_m_tn
Yes, I've had a brain MRI and an MRI of my whole spinal cord.  This thing is really affecting my life.  Four days ago I got the first sprained ankle of my entire life.  So I spent most of my time this weekend sitting with my foot elevated.  Well that set my neck off in pain due to the pressure of cushions on my neck.  This syrinx really *****.
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620923_tn?1436154699

  Do u have copies of the MRI's and the reports?

I know what u mean, I had my first ever sprain back in May '07 and the dang thing is still sore in some spots....odd how our bodies let us down....

Did u have the CINE MRI too?

Did they say y they felt ur syrinx was due to the injury from the accident or was it there b4?
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Avatar_m_tn
Yes, they said it was definitely due to the car wreck.  It really scares me at times cause I can see over the last few years how my condition has gotten worse.  I have three young children and I worry about being able to do things with them in the future.  What are people taking for a cervical syrinx? They've had me on Percocet for about a year now and starting me on Exalgo.  I've been rushed to the ER twice in the last year for extreme pain.  Sometimes the pain hurts so bad I get nauseous and I vomit.  The straining from the vomiting sends my pain level through the roof and that's when I have to go to the ER I just can't get control of the pain.  I don't think I've had a CINE MRI which one is that?
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Avatar_m_tn
I forgot, yes I do have the copies of my MRI's.  My syrinx looks just like the one on Wikipedia when you type in syringomyelia.  Except mine is a little higher up the spine I believe.
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620923_tn?1436154699

  Well a CINE MRI is a 2 part MRI it is done much like a reg MRI, except for the 2 parts and the 2nd is done in real time as a movie or cinema...hence CINE....so they can watch the way the CSF moves, to see if it pulsates w/ ur BP.....The typically use a finger clip or leads to monitor ur BP during this portion of the testing and they use a contrast dye.

Many will take a form of diuretic for a syrinx...Diamox, or Topamax....it all depends as u do not want too little fluid as u can have the same pain and issues as with too much.

If ur cerebral tonsils have herniated as a result of the accident that may be a cause of the syrinx, if that were the case a decompression may help the syrinx to shrink....if not, there is not too much that can be done unless the syrinx were of a certain size as they tend to be too small for a shunt or stent.

Do u  know if ur cerebral tonsils moved at all with the accident?
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Avatar_m_tn
This is the first I've heard of cerebral tonsils.  So I don't know if they've moved or not.  Tomorrow I'm getting an MRA done.  I do know about a year ago they had me on Diamox and it didn't help.  One thing that is for sure is that when my pain is high I can feel it pulsating in my neck.
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620923_tn?1436154699

  Ask for copies of ALL testing along with copies of the reports and see....it is possible to acquire low lying tonsils from an accident like u had....so, it is something to check out....
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