Hello Dr. Corenman,
I have an Os Odontoideum, then had an accident that rendered me unable to walk straight due to poor balance, dizziness, blurred/double vision, trouble concentrating, numb right arm, tingling sensations on top of my head and then some. My measurement of instability is beyond what it should be, I cannot recall it immediately…but it is bad (if I had to guess it’s 8mm). So it was verified by several doctors in regard to the instability.
I choose not to do surgery for a variety of reasons, one being quality of life. It was suggested that I have C1-3 fused, since I have small pedicles and am more likely to have a vertebral stroke. Skipping one extra vertebra I just don’t see how that will lessen my chances of having that predicted stroke.
I also work in the medical field and listen while my patients pray for death or something that will finally work against their pain following a “successful fusion.” The fusions are successful, and may last for a good amount of time…but then the wear and tear on nearby vertebrae, which starts to give way and the pain simply mounts where no amount of pain patches or pain meds work…and misery, substance abuse, depression and other worse case scenarios arise.
The scary part is, none of my patients have even had fusions as high up as mine is being proposed to be. So I cannot even measure the pain that I know is surely to come at some point to me. It’s a sad reality to know the state of risk I’m at for death or paralysis, versus having a life full of misery post-fusion surely to come right away or a little ways down the road.
Surgeons, I know, do their best at creating successful fusions and are often indeed able to achieve what they set out for. But I lost faith in quite a few of them as I discovered blocked responses and unfulfilled questions…like hiding the fact that BMP (bone morphogenetic protein) was to be used in their proposed surgery for me, though I asked directly what’s used for fusion, even the nursing staff and assistants never had heard of that being used with THEIR doctor they worked with. But, they did and they wouldn’t allow me to use donor bone (it wasn’t something they did-2 surgeons told me that).
So, with the certainty of increased cancer risk due to this secret use of BMP, would that surgeon ever know what additional agony they had put me through worrying for cancer to creep more likely my way? Would they care, since they now know that BMP studies reflect off-label use as being detrimental to the health of patients? Yet, they still use it.
Say I did get fusion done, when I’d show up to my surgeon sometime later after the surgery, complaining of absolutely agonizing pain now in my head and neck–and they run tests to see that my fusion is holding so ALL is well–would they say I’m just having anxiety (a common dx for women given by docs) or just give me an easy supply of drugs that will eventually cause my organs to fail and/or have me to fall into a lazy depression where I’m unmotivated to even get out of bed?
Quality of life is so very important, especially for those like myself who haven’t even reached middle age.
My neck instability doesn’t require me to sedate myself with pain meds, so my pain is manageable at this stage unlike the time of the initial injury with my pre-existing Os Odontoideum (that I personally found on my MRI reports-4 of my doctors didn’t find it important to tell me that my neck was broken from birth).
Now with Prolotherapy, I have since had 3 treatments and after the first treatment 40% of my symptoms went away! I had finally felt normal for the first time in many months! I think the injections were a lot less toxic and scary than BMP, I looked over the risks involved–other doctors only told me they wouldn’t suggest it because of the risk of infection. After me personally having had several patients lose function and sensation in their hands due to an infection or misplaced IV line…this was a risk everyone takes with any procedure so I couldn’t understand why they’d try to scare me with only that thought.
After my 2nd Prolotherapy treatment, I was asked to wear a hard collar to potentially help even more in my recovery…that didn’t work for me personally though it has and does for others. My neck got weak and my posture seemed to push my head more forward and cause more strain against the collar. So, I’m not using the collar now and only recently had my 3rd round of treatments…it’s recommended I have 6.
In knowing how scar tissue is more fibrous, and tendons and ligaments don’t have a direct blood supply…poking holes to get my body to add more attention to the area is what I hope gets things to go back where they belong.
I’d lived many years not knowing (though my doctors did and hid the fact from me) that my neck wasn’t attached because my ligaments held all things in place. If the ligaments could do it once, I am confident they will do it again. I want to at least be given a fighting chance instead of an almost certain future of chemical dependency on pain meds where I’ll never have a clear thought again outside of my fighting a narcotic.
This is important, people are important and even the former Surgeon General C. Everett Koop risked it all to get this scary Prolotherapy done and he is a success story! I’ll place his story below.
So truly, if there’s any light you can shed on anything I mention here I’m fully for hearing about it because at this point…I think I’d rather leave it in God’s hands than in the hands of surgeons who don’t inform or answer direct question and refuse to lay out all options. For the record, I’ve spoken to some top neurosurgeons totaling 5 who have all been less than straight forward and it really shocked and horrified me. More importantly, it saddened me, because I felt bad in knowing now what my patients must go through in finding good answers when in dire need…and I had an advantage having the medical background that I do!
Surgeon General talking about Prolotherapy:
Please read this letter from C. Everett Koop:
Although I have not been practicing surgery for about 15 years, I continue to see many people who have benefited from Prolotherapy as a treatment for ligament laxity.
In my own case, I had been diagnosed by two separate neurological clinics as having intractable pain. My symptoms and the lack of sleep were affecting my work. I obtained complete relief from prolotherapy. After that, I began using it on the parents of my pediatric patients.
I saw remarkable benefits when the method was used with proper indications. Certainly, if used properly, prolotherapy does no harm but can be of extraordinary benefit. I have changed many lives.
Watching some of my colleagues fight the system for the payment for Prolotherapy in their practices has led me to believe that those who make the decisions about what will and will not be covered by insurance plans are those surgical specialists who benefit most by operative procedures which are frequently not indicated, expensive, and ineffective.
Sincerely yours,
C. Everett Koop, MD