Cervical Instability C1 C2

Hi Bill

I am seeing a Prolotherapist who has had great success in treating people with neck instability. If anyone who has an Os Odontoideum is at high risk of paralysis and death, then doctors should inform their patients that they actually have one. This information was only brought to light by myself, because I looked and asked the right questions. Then after finding out, I’d wondered how many of the doctors knew this and didn’t say anything to me…and it was shocking.

So, apparently the doctors felt my ligaments held things fine and didn’t need to bother to say anything. If ligaments can be treated to do this assumed job again, where doctors at several institutions over many years didn’t say anything that it existed in me, then part of my confidence is in that thought…unless absolutely ALL of those doctors were unschooled and unknowing about this tremendous risk I had all along.

I’m going to give myself a little more time to see how I do with the Prolotherapy and then venture to Mayo. I was put on a year waiting list with them, so they didn’t see any urgency in my situation either…though I called to be sure they got the full scope of my walking around with a walker and not having a surgeon who was comfortable in doing this surgery. I still had to wait.

It’s been a more than nutty situation that has just been fully mind-blowing at the disregard out there. The number one reply I’ve received from any doctor about any problem I’ve ever had including my spinal cord contusion symptoms is: You may have anxiety.

Being a woman, this is what we hear. Women die from heart attacks because this s what we hear. I am also not the sort who has ever had anxiety and am very relaxed in most situations. So they may as well suggest another female issue, while they were at it.

But, I’m not fully dismayed. My health is important to me and I want to get my symptoms under control before I am slammed with a surgery I will regret. If I can get to feeling normal again, I won’t do the surgery. If I can’t, I may.

My story is very similar to yours. I experienced a front end collision car wreck years ago where I turned my head to the right to stop my infant son on the seat next to me from going thru the windshield when I saw the car pull out in front of me going 47 mph.
I have gone to an upper cervical chiropractor for years now that puts the C1-C2 back in. He diagnosed C1-C2 Instability very quickly after treating me. He arranged x-rays that clearly showed the instabilty and I, too have been to 2 Neurosurgeons and both ACTUALLY laughed at me during the appointment and REFUSED to look at the x-rays and MRI and the readings that I had with me because they both (2 separate appointments and each did not know about each other) said that I did not have what I thought I had. They both said that it is only seen in latent stage Rheumatoid Arthritis and in Down’s Syndrome (I am neither) and that I would not be walking around alive if I had it. Both outright refused to look at the x-rays. I went to my family doctor who ordered ANOTHER MRI and MORE x-rays and the doctor that read them said he saw nothing on the reports. I had an Orthopedic Surgeon in 2007 find the instability thru the Odontoid view on x-rays he ordered but neither Neurosurgeon would look at his x-rays and report. It is from the good graces of God himself that I am still functioning and many cash payments after my visits run out on my health plan. I am paying the chiropractor so much a year that I actually have enough as a deduction to claim it on my taxes.
I have been to 4 other chiropractors over the years and each one has taken x-rays and done reports. Their faces turn white when they come into the room to discuss theit findings and stress to me in no uncertain terms that I need to IMMEDIATELY get this fixed.
The bottom part of the neck will be torn up, from what I am told (my C4-C5 and C5-C6 have bulging 3-4 mm discs and spurring) because of the instability in the upper neck.
I went to a doctor (D.O.) here in St. Louis that was trained in Prolotherapy and had 9 rounds of 50-60 injections each into the ligaments of my neck, focusing on the C1-C2 area. I withstood the injections and ensuing destruction of the tissues and the necessary healing and my chiro said that I stabilized about 70% but it did not, by any stretch of the imagination, fix my problem. The injections are VERY painful and I, too, had hopes of it stabilizing me. I finished the 9th round back in August of last year and it did help, but did not fix my issue. The Transverse Cruciate Ligament deep within my head is damaged and too lax and the Prolo does not touch this area. I consulted with the Prolo Doctor by Chicago, Dr., on my condition and he stated that he has great success because of the many rounds he does and alot closer together than most doctors, and he orders an Aspen collar to be worn for long periods after the rounds he injects. I cannot even begin to imagine getting that much dextrose injected (8% in Prolo…a normal IV they start like in the ER is 3%) that close together!!
So, I too, do not know what to do. My next step is to go to a Neurologist and see if he or she will take me more seriously and can suggest what to do.
Please, if anyone out there knows of a doctor that realizes the extreme pain, severe psychological damage, the money, and the depression caused from no hope, please respond to me. I live in a suberb right outside of St. Louis, MO. Thank You for listening!