At first i guess i was under the impression that hypermobility was extreme and rare. I didnt think i had it but after i looked it up i realized that i have always had some hypermobility. Finger joints bend past where is normal without pushing then, doublejointed and elbows overextend. Can touch thumb flat against forearm. So is this a symptom of the autodysotomia (sp?) Or just of the eds? And could my joint swelling an pain be caused by either of the two? Thanks and sorry i ask alot of questions.
Okay am wondering if NS diagnosed me with this and didnt mention it exactly. I read a bit about CCI . Right before surgery he told me i had the degenerative disc disease and arthritis and also have scoliosis and no curve in my neck , the car wreck knocked it out. Had cine mri, lying down and had some interupted cs flow. And NS said that the only thing to do about neck is a bone fusion. But he said he wouldnt recommend it.
Thank you Abby, hugs back. Thats quite an imlressive resume you got there. Lol. . I have been wondering why i felt better after surgery but it was so short lived. Of course i was also on pain meds after surgery and so am wondering how much relief was surgery related or medication. I know decompression is to keep itfrom getting worse and now im getting worse so am thinking there is definately something else wrong. sorry but my memory is so bad i forget to mention things or repeat myself so i apologize now for future blunders. New symptom is after i fall asleep i wake up choking a d coughing and feel like i cant breathe, it takes 5 min to 2 hours to stop and is scary. Has been doing this every other day to every day. And of course all the coughing just exacerbates my headaches. :(
Thank you jenn, i went thru that website. Holy sh*t! I have almost every symptom. Am gonna make list of symptoms to hopefully ( cross fingers) give to dr. If i dont forget it like last time.
Allura
jcdemar said:
Allura, EDS can cause widespread joint pain. Since you have hypermobility you need to be screened for CCI.
Some great videos about CCI with EDS and why some if these people don't get relief with a decompression or get worsening symptoms.
CSFinfo.org Videos Greater metro area Watch anything with cranio cervical instability
The CCI is just as important as the Chiari, if it is swept aside I would move on to another NS- not NS understand what CCI is, especially in connection with Chiari. I hope hope hope your NS has gets it.
How or should i say who do i go to to get diagnosed with hypermobility or cci? so far NS, physical therapist and my reg doctor havent done anything as far as diagnosing it even when i brought it up. PT says i have it and checked me but he couldnt diagnose me.
jcdemar said:
Allura, EDS can cause widespread joint pain. Since you have hypermobility you need to be screened for CCI.
Some great videos about CCI with EDS and why some if these people don't get relief with a decompression or get worsening symptoms.
CSFinfo.org Videos Greater metro area Watch anything with cranio cervical instability
Allura, not all NSs are aware of CCI in the setting of hypermobility. They are aware of it in the setting of trauma... so a broken neck or evidence of damage to a few specific ligaments. They are out there, though. You will have to start researching who these guys are. Those csf videos are a good resource. This is a list of the few I know about.
Henderson, MD Sandhu, MD Georgetown Patel, SC Frim, il TCI, NY Rosner, NC Theodore, AZ
Dr Henderson diagnosed my CCI. Before him 4 other NSs and two radiologists did not identify it. Keep going you are doing the right things :)
