Two Questions

[kgperry]

I know it's been said a few times that all possible conditions need to be ruled out for a successful surgery. I know EDS/hypermobility is one (which inclues cranial instability, right?) and syramalingia is another. What other conditions need to be ruled out?

Second question is whether anyone has had surgery with Dr. Klinge in Rhode Island. Any feedback/reviews of your experience?

[tattooer601]

Congrates, Proper testing and proper care, I hope and pray relief finds you soon.

[selmaS]

  Fantastic.....just remember to ask for a copy of the MRI on disk and a copy of the report.

[kgperry]

Miraculously just got a CINE MRI ordered out of the blue. I'll take the miracle, and we'll get more clues as to what is going on!

[selmaS]

  So if/when you have a CINE MRI it may show an obstruction to your CSF....which will make you a surgical candidate.

Typically a syrinx means CSF flow obstruction...it can also be from an injury, but with a Chiari DX I would venture to say it is from the Chiari.....but do look back to see if you ever had any trauma to your thoracic area.

I can not imagine dealing with all this with 3 little ones....I was lucky and had no idea what was wrong until my daughter was away at college......I am sure it would have made things more difficult to know what was going on and possibly change how and when I did some things....work related..etc....

Hang in there as it can get better <3

[kgperry]

Just got my Tspine MRI back and there's a "small syrinx" from T7-T10. I feel like I'm just being set up to be a sad case. Thanks for all your responses, selmaS. Trying to have hope because I have three kids, including a 3 month old. :(

[selmaS]

  I am sorry you do not have that resource...in that case I would have a baseline echo done on the heart so you rule any issues out b4 surgery and  for future reference have a baseline to compare to.

[kgperry]

I'm adopted, so all I know about my medical history is that my birth parents had crappy genes. :/

[selmaS]

  Conditions we should know about  b4 surgery-

POTS, Syringomyelia, ICP, sleep apnea, EDS/CCI, retroflexed odontoid, kinking of the brain stem,.....

Also look to your families medical history so if heart issues run in the family your heart should be tested b4 a major surgery such as this.