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Chiari Malformation Community
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Avatar universal

Syringomyelia in thoracic vertabrae - breakout pain

Hi,

I was diagnosed with a syrinx earlier in the year in the t8-t9-t10 vertebrae, it was discovered via MRI which was ordered due to me having sudden bouts of debilitating pain (starts in the middle of my back then a few minutes later moves to my stomach just below my sternum, episodes vary in severity from bad to unable to breathe/pouring with sweat and then vomiting).

I also had numbness and problems with my legs and feet for which I was prescribed Gabapentin by my neurologist which worked very well.

However the episodes of pain have continued and the doctors have at various points decided it was Kidney Stones, Gallstones, a problem with my gall bladder and pancreatitis however I've had CT scans, ultrasounds, numerous blood tests and urine tests and none of them show up anything characteristic of the above.

Has anyone else with a thoracic syrinx experienced the sudden onset pain I describe above, I've been to A&E (ER if you are american) about 8 times (and had more than a dozen episodes, sometimes they are a month apart, sometime two in the same day) since the beginning of the year and the only thing that has helped with the sudden onset pain is IV morphine administered by a paramedic recently.

Symptoms vary based on severity but always start with sudden pain in the back then the front which either levels of or continues to get worse until I struggle to breathe/pour with sweat and sometimes vomit (so much that I've vomited blood from tearing something inside).

Has anyone else with syringomyelia experienced this sudden pain?
4 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

  I do not have a syrinx and can not relate but I know there are other members here that should be able to share their experience with you.

May I ask, is your syrinx congenital or was it acquired due to an injury?

And do you have Chiari as well? Or any other related conditions/issues?

  And  last, may I ask where  you are from? We might be able to offer info on Drs if we know your area.....not that we can refer you but we do have lists to help you research them.
Avatar universal
Hi thanks for the response.

It's ideopathic, there is no sign of a Chiari, I have very slight scoliosis and I'm in the North of England.
620923 tn?1452919248
COMMUNITY LEADER

  Hi...many of us do have a mild scoliosis....have they ruled out tethered cord? that would involve your lumbar spine?

The Ann Conroy Trust should be able to provide you with Drs informed and experienced with this condition....http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS-UK/show/1503569

Keep us posted on your progress on finding a Dr and how you are doing on a daily basis.
Avatar universal
Hi, I have syrinx in same area. When I had shunt surgery and woke up I was in screaming crying pain . It felt like my body from under my breast to the top of my hips all the way around had taken a severe beating , or I had been in a severe car accident  and received internal injuries , I was told it was because of the area of the surgery ( I'm the thoracic ) I was seen by a pain management doctor who prescribed a opioid patch. That was the only thing that helped . You should see a doctor that treats syringomyelia and a pain management doctor . Hope this helps
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620923 tn?1452919248
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