Viewing 6 posts - 37 through 42 (of 44 total)
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  • thebird
    Participant
    Post count: 23

    Thanks for taking the time to give me some info Dr Corenman.

    My NS mentioned there is no cord swelling yet which means 2 things. Either it’s subtle and we have caught it early or it’s an exception. He also mentions this can explain why my protein is elevated in CSF.

    I still have to get the angiogram and go from there however I assume once confirmed I’ll be taken in for surgery. My research shows these are treatable and via surgery have the best success and symptoms are often seen improved following surgery. Is my research correct?

    Also, it is a myelopathy so I am suffering now with weakness and balance issues below the level but as I understand it, when normal blood flow comes back then things improve but there is still some damage done. I guess mine was caught in under a year so hopefully this is better for me I hope. Reading articles, people usually get diagnosed late due to the rareness and mimicking other conditions.

    While I am waiting, is it best to just rest or try do what I can so I have the best chance of recovery? I notice my legs are strong sometimes, but weak other times. Walking can be challenging but still achievable. Comes and goes.

    Donald Corenman, MD, DC
    Moderator
    Post count: 8656

    AV malformations are treatable. I don’t do surgery on these malformations so I cannot comment on what is surgical and what is not. I think you should continue to keep your legs as strong as possible.

    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.
    thebird
    Participant
    Post count: 23

    Hi Dr Corenman,

    The saga continues, and not in my favour.

    I had the angiogram which was clear of AVM or fistula.

    The Neurosurgeon gave me the option of 2 level ACDF as we had no where to go. I proceeded. Surgery was performed last night, I notice the neuropathy May have reduced but other symptoms remain. I have little to no post-operative pain and surgery was very smooth. The NS mentioned during surgery he noticed my thyroid to be right and possibly enlarged and ordered bloods on me today for thyroid function. Looking at google, this can cause neurological symptoms? He also said my cord definitely had more pressure on it than the MRIs showed and he was very surprised.

    I understand it is not the desired outcome for me, but after the extensive testing this was the direction it came to. I just have a couple of questions if you don’t mind.

    Symptoms that remain

    1. Weakness in lower limbs
    2. Unsteadiness
    3. Lose contact with feet/legs every few steps and sometimes don’t feel them hit the ground
    4. Postural instability when standing/sitting

    Also still have the elevated protein in CSF to no explanation.

    Actually only one question, can the decompression take time to improve symptoms? My NS has mentioned usually you have instant relief when pressure is relieved. What are you thoughts on this?

    If you have any info or insight to add I would appreciate it but pretty much back to neurologist for me to try find the cause linking the elevated protein as I assume that is my problem now the neck is ruled out?

    Thanks for your valued time, as always

    thebird
    Participant
    Post count: 23

    Further update:

    Have spoken to NS again and he advised we need to give it at least 6 weeks to see if there is improvement, due to the amount of time I’ve had symptoms. Also said based on the damage he saw in there, he would be surprised if it was not responsible for some of my issues but still indicated the thyroid results are coming which can explain some too, if found causing an issue.

    thebird
    Participant
    Post count: 23

    Hi Dr Corenman,

    Not sure if you still have any interest in my case, however symptoms persisted.

    It was finally found after many lumbar punctures that I have some male version of benign intracranial hypertension with opening pressure of around 30cm on a few occasions but no headache present and no weight issues or vision problems. I was started on diamox and symptoms dramatically reduced however neuropathy in legs still remain, some unsteadiness/transmission issues when walking but able to work full time again.

    Elevated protein is still not explained, and unable to identify if pressure is still causing symptoms or the issue that is raising protein is causing symptoms.

    No cause has been found for the pressure besides narrowed transverse sinus line, but it is not confirmed and can’t do anything until elevated protein is explained.

    Kind regards

    Donald Corenman, MD, DC
    Moderator
    Post count: 8656

    I think that a well regarded neurologist would be a good next step. The combination of higher CSF pressure along with protein in the CSF indicates a disorder yet to be named. It does not seem to be myelopathy.

    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.
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