← Return to Possible Ehlers-Danlos Syndrome with craniocervical instability

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@jnd2023

Csalter

I am new to this and just learning somewhat how to comment. I was just fixing to ask the same question about cervical instability at the Mayo Clinic in Rochester. I have been dealing with cervical instability for years, and have teardrop pain daily. I am fused c3-c-6. With the transverse and alar ligaments loose causing the issue. You do need to find a Dr that does the DMX films they are rare I know of one in Denver and ft myers Florida I’ve been to them both. That is the best way to determine if you have instability and how bad. I have been treated at the centennial/Shultz clinic in Broomfield Colorado 5 times with bone marrow steam cell therapy. Since my problem is the alar and transverse ligaments they went in threw the mouth and injected these ligaments the only place in the world to do this. It normally takes 2-4 times since I was fused it has been and still is a difficult area to treat with good success. I’ve spent two years in the process. It is extremely expensive. I’m seeking other options of anyone on this topic and or experience. I messed up and tried soft wave therapy after I had made good progress with steam cell therapy due to the pain I was still experiencing, but my neck was much tighter at the time. . Huge mistake. It took away everything I had done for two years all I had gained. I am broken over this, I was told it would help with the pain, also the doctor said he had done it on necks and no problem, but it breaks everything down and you have to rebuild I was so mislead, now my neck is loose again I’m Dizzy all the time and chronic tight muscles and hard knots in my muscles that bring tears just turning my head and total fog in my thinking. It’s been a long hard journey, I don’t think I have it in me to start over and sure don’t have the kind of funds stem cell therapy cost. Hope this helps be glad to share more or support, but also asking if anyone else is on this journey and if Mayo has anything to offer.

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Replies to "Csalter I am new to this and just learning somewhat how to comment. I was just..."

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.

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.