Post by davidd on Mar 6, 2012 21:41:49 GMT -6
Hi all, both my daughter and son have suffered from spinal cord cavenova - bleeds. Hi Jaz! It is refreshing to see this forum as you all know 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”. Doctors where not clear at what point surgery is required, however did mention life support would qualify. As surgery is such high risk on the spine - this is typically regarded as the “last option”. Fortunately based on experience with my daughter (her story posted January 25, 2012, 07:21:02 PM) 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 remedial 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; e.g. Reiki, iridology, acupuncture, herbal, alpha dynamics, etc….
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”. Doctors where not clear at what point surgery is required, however did mention life support would qualify. As surgery is such high risk on the spine - this is typically regarded as the “last option”. Fortunately based on experience with my daughter (her story posted January 25, 2012, 07:21:02 PM) 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 remedial 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; e.g. Reiki, iridology, acupuncture, herbal, alpha dynamics, etc….
