HaloHelp

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.

Hello Again Dr. Corenman,

It’s not so much the “fear” of surgery for my Os Odontoideum, it’s my being able to live a fulfilling life as normal as possible—that’s what’s most important. I currently am not in a huge amount of pain, except for headaches at times. It took a 3rd whole hospital institution to find, after my outright insistence, that my cord must have been bruised from my accident. But all the rest still contend to this day that there’s nothing wrong, though I saw the contusion on my MRI now and though I had to regain my balance and such after the accident and use a walker.

Being caught under pain and hooked on pain meds is most daunting: I lived a huge portion of my childhood, strung out on medications for seizures. I was oblivious and actually thought to be mentally “slow” until my parent’s decided to not listen to the doctors anymore and took me off all medications.

Miraculously, I never had a seizure again after getting rid of the “saving” meds, which I’m now suspicious were partly causing my problems.

It was discovered immediately that I was a normal kid, but medications drowned out that reality. A friend of mine wasn’t so lucky, he had the same issue as I did but his parents kept him on his medications. His heart stopped at the age of 16, thanks to his being overmedicated. His parent’s never forgave themselves.

The thought of having to go under the looming pain medications following spinal fusion at C1-C2, for who knows how long, is not inviting Doctors tell my patients they will be out of work for maybe 4 weeks (knowingly and annoyingly underestimating)…3 months later they finally are able to attempt work and often realize they may not be able to handle working ever again or will be able to–but in agony and drugged if they can even afford their pain meds.

Surgery can cause great pain and enduring pain. Fusion is especially difficult to recover from, and for the C1-C2 it’s such a huge life changer with the mobility quickly taken away. Fusion may be okay for a short while or long while, but when it degrades neighboring structures—it’s all agony and more surgery to fuse more and remove scar tissue. The internet is riddled with story after story of people not doing well after their fusion, or being sent to pain management clinics where they are treated like an addict.

Here’s a quote from a Bloomberg.com article:
In a U.S. study in Spine in 2007, surgeons reported fusion was successful in only 41 percent of 75 patients suffering from lower-back disc degeneration. Success measures included pain reduction. Two years earlier in the same journal, surgeons found a 47 percent success rate among 99 patients, 80 percent of which were taking narcotics for pain two years later. Both studies compared fusion to artificial disc replacement in trials submitted to the FDA.

When pain management isn’t reached, patients turn to abusing other drugs or alcohol. It ruins their life, where they often even end up prematurely in nursing and rehab facilities—essentially wasting away as they become less and less mobile and medications cause them other health problems.

I went to Johns Hopkins, and this is where I was told I was at risk for the vertebral stroke due to my small pedicles. Many surgeons usually are not so forth coming with even basic questions I’ve asked in the past like, “What’s the procedure called you’ll do–‘Harms’?” I literally got a shoulder shrug as the answer from that top doc. So, for this doctor to tell me this, it had to be important. He said, “It’s rare that someone is at such a high risk for vertebral artery stroke. But you are, so I’m recommending we skip C2 and fuse C3!” I didn’t know how a skip could be done or how that’d even help make it any better (do you?), but that was his word choice not mine.

I think sometimes extending life at all cost isn’t always the best cause. To be honest, if I injure my C1/C2 good enough where I don’t have immediate help, I’ll die since I won’t be able to breathe on my own. I’m not afraid of dying, I’ve already been there and it’s not a bad place to be.

Weighing my options is still on the table, and so far Prolotherapy is my choice for now. The doctor I go to only uses natural substances, and I haven’t had any issues with it. My ligaments wore out over the years and then fully gave way due to the accident causing this instability. Things held together fine for so long, and I was super active where my neck should have snapped a thousand times over.

So, this is why I’m confident in the Prolotherapy to try and get my ligaments back to how they worked so well before. Doctors wouldn’t EVEN tell me for years that I had this Os Odontoideum, so they seemed to think my ligaments were doing the job for me, too. Like it was the job of my ligaments and not my vertebra, to hold my head on…so they said nothing…4 doctors! After reading my MRI reports and seeing it as the second dx right in front of them, and they skipped over it…really stunned and ticked me off to be honest that I HAD TO ask about it!

So, yes…unfortunately I’ve got an Os Odontoideum and it’s causing me twitches all over, makes my head feel like it’s going to fall off as itl iterally wobbles…and yet I had to leave my hospital of choice in a major city at the #1 hospital because they said though my neck is measurably unstable—I don’t have any muscle weakness yet and I would surely not want that type of fusion surgery. They even said my head wobble might be from stress—right after I got injured and they continue to think that. Though my arm went numb, top of head went numb, I stuttered, blurred vision and horrible balance to boot!

A few doctor searches and I finally got one to pull up my MRI and showed me that I had a spinal contusion…it was clearly visible! So, you could say that I more than have a bad taste in my mouth about quite a few things, but I am overall very practical and calm in most cases…even this. So, racing to a surgeon isn’t my choice, but I understand your advice.

How would you say your patients did after their C1-C2 fusion? Did they all get completely off pain meds—never to complain again? How would you know if it ever turned sour for them if they moved or went to another doctor later or even went to one with a different specialty to help with their ongoing issues? If they came back due to pain and their fusion was holding and it looked good, would you just refer them to the pain clinic?

Thanks for your time in reading this lengthy letter Dr. Corenman.

Here’s in reference and in warning in the use of BMP:

BMP usage is causing harm:
The US. Committee is now after Medtronic for paying physicians who authored the BMP research and left out the cancer causing facts ($210 million dollars was paid to them—public knowledge). Full article that the government has outright evidence of them hiding their direct knowledge of MANY scary side effects with cancer being ONLY one of them.

You mentioned that BMP is safe to use, because there was only one report saying it was dangerous. If a company like Medtronic has to falsify information about their product that should make everyone nervous. It was more than proven that the results of the use of BMP was corrupted and biased as shown in thE New York Times article.

And this quote would convince me to never use it:
“The researchers had information showing that at two and three years after being implanted with the genetically engineered protein, significantly higher numbers of Amplify patients were being diagnosed with cancer, but they did not report it on their paper.
The authors mentioned the cancer link only in a table accompanying the paper. The text itself never addressed the concern of whether BMP-2 might fuel cancer.
“As a physician, you go by what your colleagues publish,” said Charles Rosen, an orthopedic surgeon and president of the Association for Medical Ethics. “It’s an abuse of trust.”

If there is even the slightest chance of causing harm, after so much good is aimed for, it should be at least considered. I know people who go into these fields, go into for all the right reasons. But I do also know how the system is corrupted with kickbacks for useage of say, Medtronic devices.

This is taken from additional research: “This risk of adverse events associated with rhBMP-2 is 10 to 50 times the original estimates reported in the industry-sponsored peer-reviewed publications.”

There’s an article where BMP has been found to injure the nervous system:

There’s research showing how “BMP enthusiast” overstate the morbidity of harvesting bone to ensure patients on the use of BMP instead:

The increased fusion rate isn’t by that much to want to risk a patient, I personally feel. What does it help to fix their back, only for them to get a killer cancer later or other serious complications that hinders their living a complete life?

I HAD TO REMOVE THE LINKS TO THE ARTICLES SINCE THEY WEREN’T BEING ALLOWED OTHERWISE I’D HAVE THEM HERE.

Hi,

I am about to try something called Prolotherapy for my loose ligaments in my C1-C2 area. I have similar problems as you do and it can only help and it’s been known to work.

I don’t want the surgery either, and the prognosis is honestly horrific from what I’ve read. So check it out and look for Prolotherapy, the doctor in Oak Park, IL is one of the top in the country and you can put a search in Youtube to find more specifically on Prolotherapy for c1-c2 instability :) Be sure that if you get it done that it’s done with “comprehensive treatment” meaning, not just a handful of injections…but a slew of them where the whole area is covered well enough to treat everything–some fail because not enough was covered.

I am hopeful it works for me and I just found out about it myself…I can’t wait to try it :) It’s all about getting the ligaments to repair themselves and create stability, causing them to get tight again!!! A dream come true for me.

Even where I read negative articles about prolotherapy, the people who had it done attacked the article writer…so I would say there is something to this…I wish you luck and I know your pain…you are not alone :)

And I’ve had doctors say the craziest things to me too that they should be ashamed to even dare to say to another human being…I read where a doctor said you were seeking attention…I swear…I don’t know where their heads are at sometimes!

~Halo