New DX: Chiari 1 Anomaly

[Reschik220]

Newly diagnosed and to make a long story short, I struggled for years with headaches/migraines. OTC and RX remedies didn't seem to help. But I realized that my health had changed dramatically these past six months, and I assumed that some of the weird symptoms (sudden eye movement, vision changes, dizziness, neck stiffness, aches, pressure) were associated with the headaches/migraines I'd get persistently. Maybe I was working too hard and needed a good night's sleep. I don't sleep well as it is...Sometimes I think I stop breathing there for a second and I wake up, but yet again, I ignore it.

I finally went to my PCP and I got an MRI. He told me it was incidental finding and to take Maxalt for the headaches. I was probably born with this. My mother has spina bifida but she's able to walk around, she's not paralyzed. My sister has syrinx.

My symptoms are getting worse and I fear surgery. I don't know a lot about this malformation other than the bit of research I was able to do. Any advice would be much appreciated...I have yet to see a specialist.

[selmaS]

  We do have a Dr list for Mobile....do research the Dr as I am not familiar with them or the outcome of surgeries..etc....

ALABAMA
Dr. Anthony Martino
Mobile, Alabama

[Reschik220]

My sister had an MRI of the brain and doesn't have Chiari. We are identical twins. I happen to work for pulmonary specialists so I'll talk to them about a sleep study. I'll try and get the ball rolling in regards to a specialist. I hope there is one close to Alabama.

[Reschik220]

Thank you for the info. I appreciate the help.

[selmaS]

  Hi and welcome to the Chiari forum,

Yes, you will need a true Chiari specialist.....and there are names on a list here of Drs the members have been to , treated by and liked......this list is not a referral nor an endorsement, but a tool for you to research the Drs..

You will also need more testing....so many Drs are not well informed or experienced on Chiari and ALL related conditions......one of which you may have and NEED to have testing for is sleep apnea.....

Other testing is for a syrinx and it is MRI's of the complete spine....as a syrinx can form anywhere and most Drs only check the cervical spine as it is the weakest area of the spine and prone to a syrinx due to injury.....with Chiari patients have a syrinx form in the thoracic and lumbar spine too....tethered cord is also related as is spina bifida....this is why we also need a full spine MRI....Ehlers-Danlos* is also related and can affect the disks in the spine, yet another reason to have a full spine MRI.

The other related conditions should be ruled out b4 surgery if surgery is an option, but ALL related conditions need to be ruled out- EDS*, ICP, CCI, POTS, sleep apnea,Syringomyelia, tethered cord, Hashimoto's thyroiditis.....as these conditions can also affect the surgical outcome if precautions are not taken during surgery....

Your Dr was right in that you were most likely born with this...but it is not incidental...and I would caution  your sister to have more testing done as her syrinx could be due to having Chiari.

[ScalpMassager]

I think you need to see a specialist.  mayoclinic.org has a good description of the condition.