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DiscussionPossible Ehlers-Danlos Syndrome with craniocervical instability
Bones, Joints & Muscles | Last Active: Jun 20 10:24am | Replies (68)Comment receiving replies
Replies to "Csalter I am new to this and just learning somewhat how to comment. I was just..."
I am so sorry you are going through all of that.
I completely understand the dizziness, brain fog, pain etc. I don't have the financial means nor ability to travel and try to find someone who is more knowledgeable in CCI/Atlas instability.
I was told on my supine MRI that my ligaments were ok? Again, I did not see anyone familiar with instability. As with a lot of people, the supine MRI did not show instability. Which at times, is why an upright and DMX films are requested, from my understanding.
I do need to do PT again with someone who has more knowledge with bendy folks. My muscles are so tight in my neck/trap area on the left from tying to keep my neck where it should be. I need to be more proactive in getting some dry needling and work on relaxing the muscle and building up the right muscles. I am so sorry from work sometimes; all I want to do is go home.
I'd like to avoid surgery, but we will see. I don't have the energy to try and find a Dr like Henderson, Patel and get on their waiting list. Insurance probably won't cover much, and I already have medical bills, school loans, credit card debt. I would honestly just probably "give up". Sounds awful, but I just don't have the energy to deal with it all, nor worry about the cost.
Sorry for your unsuccessful search. I have had 4-7's ligaments tightened by a Dr. who learned the techniques at Schultz and it was successful. Number 4 was the worst as described by a Digital Motion Xray. The work stopped the worst symptoms but I still have some, so I just do a 'palace guard" neck movement .... chin to the chest and stretch the neck up. I seems to realign the joints. Have had the SI Joint worked on as well and again the same kind of results ... no more partial dislocations or wild hip swings but again I have a movement to realign the joint when it goes off a bit. Good luck.