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  • HaloHelp
    Member
    Post count: 6

    Hello Dr. Corenman,

    I fully aimed to get the best doctor to help with doing my fusion that I know that I need, due to the gross instability. It was difficult, but I surmised that the doctors I was met with, simply had not seen someone like myself often for them to have aimed to make me believe I was fine with all of my odd symptoms going on the way they were. After sitting in a hospital for 2 weeks, it was fully dismaying to be told “you have migraines, so try to ignore it so you can walk without a walker”…after my neck was injured like that.

    It was even more dismaying to try to get therapy done for my issues a few times, but was turned down because, “Your neck is broken and unstable, why’d they send you here? We can’t risk the liability.”

    So, I managed on my own to get better and then headed on a mission to find the real problem and found that contusion. I then headed to Hopkins, fully prepared to get ready for a surgery only to be told about my high VA stroke risk. Shocking, but not initially a deal breaker.

    I had patients with the horrible outcomes of fusions, but none as high up as C1-C2. So, I looked to chat with others online to see how they were doing following their fusions there and it was horrifying. I read of nothing but regrets (literally) and lists of pain medications and the best mixes of them to get any relief and how to breathe through the pain to try and tolerate it somewhat.

    I only heard from one who was only a few months out from surgery who was doing okay, another who after 23 years of fusion did great. But then at the ripe old age of 39, he got debilitating pain and was told his fusion was fine and to “man up” that pain was to be expected at some point from a fusion like his.

    So, it is a harsh reality to be faced with me feeling unstable and at risk, but mostly pain free right now. To hopefully getting stability with fusion and potentially losing my career over pain, medications, and not ever having a clear thought again due to taking pain meds. Let alone losing the ability to rotate my head and look like a normal human again.

    The doctor not knowing of the Harms technique name wasn’t a huge deal, I merely wanted to know what types of screws he’d be using (Harms being best), to know if he was using wire, and if he was planning on using BMP—just basic info. I wasn’t aiming to do much but focus on getting better. Getting the shoulder shrug was shocking, but he completely avoided telling me he did indeed use BMP…it took his nurses by surprise too after calling 3 times to find out, “BMP doesn’t sound familiar so I doubt he uses it.” Was the response I got. But he did and refused my request to use my own bone, so I had to find yet another doctor.

    Blocked responses and various almost “blaming” me for feeling as I did, because it was “unheard of”…has been damaging to me—that I’ll admit. Especially being a medical professional myself, which I didn’t always indicate to the doctors, it was sad to see how doctors weren’t very use to a patient who wanted to be informed. One doctor said, “I’m just used to patients coming and saying ‘Fix me doc!”’ Then he stopped giving me much feedback.

    Question: With the proposed C1-3 fusion, “skipping” C2 due to the small pedicle issue…how do you feel that may help reduce VA stroke?

    How are your 25 patients doing after their C1-C2 fusions? Are pain meds and other issues still part of their life?

    HaloHelp
    Member
    Post count: 6

    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.

    Donald Corenman, MD, DC
    Moderator
    Post count: 8409

    The C1-2 fusion is not a common surgery as this level is normally stable. Unfortunately, fusion of this level will reduce the ability of head rotation (looking over your shoulder) by at least 50%.That is the price to be paid for preventing a potential devastating cord injury in your case.

    Small C2 pedicles do not preclude a successful fusion surgery. Fusion down to C3 can help if necessary and wiring of the C2 arch can help. Also lamina screws of C2 (every C2 vertebra has thick lamina) are very successful and create a great stabilization base.

    Dr. Corenman

    PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
     
    Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
    jbrown20
    Member
    Post count: 1

    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!

    Donald Corenman, MD, DC
    Moderator
    Post count: 8409

    I do not endorse prolotherapy in the cervical spine, especially the upper cervical spine due to the potential risk of injury to the spinal cord and/or vertebral arteries.

    Dr. Corenman

    PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
     
    Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.
    frog37
    Member
    Post count: 6

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