Neck Instability And Eds?

[Radha]

recently i have noticed my neck feels more unstable like the bones are just loose right under the skull, and not just the usual cracking and popping sound i get when i turn my head. could this be because of EDS or the POTS? do any of you have this kind of neck problem?

Radha

[Rachel]

POTS wouldn't cause loose joints, but EDS could. I would talk to your doctor about it.

My neck isn't unstable, but I am "loose" in other places (lower spine, wrists, hips) because of EDS (hypermobility type).

Rachel

[Maxine]

Can you see a doctor who specializes in EDS? Neck instability or cervical/cranial instability is very serious. Maybe your doctor can order an x-ray in flexation/extension to rule this in or out. Then if he/she feels you have a problem, they may refer you to a specialist. Are other joints unstable? Do you have frequent dislocations, or subluxations?

CCI/(cervical/cranial instability) can cause ANS dysfunction. My POTS is a result of my EDS and CCI.

The EDS can cause poor vascular tone resulting in orthostatic intolerance from blood pooling.

I didn't notice my instability until after my neck surgery to remove herniated disks. Two disks were removed in C5, 6, and 7. Doner disks replaced the herniated ones, and a fusion was done along with a titanium plate to add further support for the area. I did not know I had EDS at this time, and the surgeon didn't either. After stabilizing this area, the areas above and below it became unstable more quickly due to the EDS.

Maxine :0)

[juliegee]

My son suffered a possible neck subluxation years ago. We were out walking after dinner and he turned his head to look at the moon and began screaming. He fell to the ground and was unable to walk home. I ran home and got the car, carefully got him in (and not realizing the seriousness of what had happened) put him to bed with motrin and a heating pad. He was in so much pain by morning, he was completely unable to hold his own head up. He rigged a sling (that he made out of a sweatshirt) and carried above his head. He was repeatedly vomiting, etc. His head was totally cocked to one side and held up by the sweatshirt sling. In retrospect, I should have gone straight to the ER, but I took him to his ped, who put him on phenergan suppositories, flexeril, and codeine. Mack slept for a week, resting his neck, and was able to resume attending school. The pain and other neck problems persisted. I took him to a neurosurgeon who surmised that it may have been a subluxation. It was awful.

To answer your question, Mack may have EDS. We just recently saw a geneticist, who is working to determine type. Definately mention this to your doctor. He/she may refer you to a neurologist/neurosurgeon (turf territory among docs.) By feeling the joint, they can probably tell it it's abnormally loose and advise. Seeing Mack in that much pain was so scary. Do all you can to avoid a subluxation.

Julie

[Radha]

thanks to all of you for your input and ideas, if it is the EDS causing the neck instability and looseness, then what can anyone do? there is no medicine or surgery unless it is a herniated disc right?

Radha

[juliegee]

I doubt there is medication or surgery (you would want!) to fix the problem. BUT, maybe you will find there are certain positions or movements that you have to avoid or do more carefully. Mack's problem resurfaced once during an edoscopy when his pediatric GI let his neck fall backwards off the table (maybe making the procedure easier for himself?!@$#) In recovery Mack's BP was sky high. We couldn't figure out why....until he was able to mutter "My neck!" The nuerosurgeon had to be called in, no subluxation (but close.) He ended up needing lots of narcotic pain meds to bring his BP back down and to make him more comfortable.

Definately talk with your doctor about this. Maybe by feeling the connection or with X-rays they can figure out if the muscles, tendons, ligaments are too loose. If so, I bet there are strengthening exercises you can do. I think they are commonly prescribed with EDS to strengthen the muscles to compensate for the more lax soft tissues. Let us know what you find out.

Julie

[juliegee]

Radha,

I just heard back from our geneticist at Emory today. In addition to testing my son and I for EDS (vascular type), we are also being tested for another genetic disorder called Loeys-Dietz Syndrome (via blood test.) An unstable neck is a clinical feature of this disorder. Thought I'd mention it in case you want to google it to learn more.

Julie