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Thread: Spinal Cord Cavernoma

  1. #1

    Spinal Cord Cavernoma

    Hi all, both my daughter and son have suffered from spinal cord cavenova - bleeds. It is refreshing to see this forum as information is very limited. I continue to search for answers to some specific questions, and seek additional clarification on personal experience;
    1) Prevent Cavernoma – Genetic cause can be treated for future generations through IVF gene slicing.
    2) Bleed Triggers – dehydration, exertion, blood thinning medications, and likely stress lead to additional strain on a cavernoma = don’t overdo it and listen to your body if you are at high risk.
    3) Emergency Treatment – when a bleed occurs treatment is typically quoted “monitor the condition carefully and wait to see further deterioration until a point when emergency surgery is required”. As surgery is such high risk on the spine - this is typically regarded as the “last option”. Doctors where not clear at what point surgery is required, however did mention life support would qualify. Fortunately based on experience with my daughter (had a spinal cavernoma bleed 2 years ago) we were able to mitigate the nerve damage to my son through insisting doctors gave him steroid injections. This did take some convincing, although there are no real side affects for short term use (except maybe improved appetite). Doctors finally agreed there was more to loose doing nothing while his condition deteriorated, as opposed to trying steroids. The creeping numbness halted approx. 1Hr after the injection, and did not progress further while this treatment was maintained. Although steroids are known to treat inflammation, all people react differently, but it worked for us and better than watching a loved one loose their body functions one by one. I would not recommend other inflammation treatments.
    4) Remedial Treatment. I am glad to say my son is recovering at a much faster pace than my daughter, and likely due to her actions in insisting doctors treat the condition before surgery is required. She was treated with steroids after 4 days of diagnosis; my son was treated after two days. They are now at similar levels of recovery after 2 years for my daughter, and 1 month for my son. Ongoing treatment appears to consist of various forms of pain treatment. One common factor appears to be muscular pain – cause and occurrence unknown (possibly spasms while sleeping). This appears best treated by “alternative deep muscle massage technique the re-stretches contracted muscles and removes muscle knots”.

    I am especially interested in knowing others experience with alternative therapies for post spinal bleed muscular pain; e.g. Reiki, iridology, acupuncture, herbal, alpha dynamics, etc….

    I would also like to hear from others who have had “low risk” surgery to remove a cavernoma, and how this was assessed.

  2. #2
    Super Moderator Sue Pendleton's Avatar
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    Not sure how much help I'll be. Spontaneous bleeds of the spine I'm not familiar with. I had, and I know many more who have suffered ischemic strokes to the cord. Onset is rapid and there are few known causes: heart surgery where cross clamping was done too long, lumbar strokes from a rare epidural, narcotic drug use (heroin that drops the blood pressure so low blood slows to the spine or cocaine where high blood pressure causes a burst in a spinal artery clogging normal blood flow). Most spinal infarcts are like mine with no known cause.

    Are your children treated at a teaching hospital or part of a study in the genetics of their disease?
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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