Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 In a message dated 8/19/00 4:38:08 PM Central Daylight Time, babidoll82@... writes: << I think that I have heard that there is a six month window of opportunity from diagnosis to surgery in order for the symptoms not to become permenent. Has anyone else heard this? If so, do you know where I can find written documentation of this? I need it to prove doctors diagnosis! >> I think it is generally thought that the sooner the chiari is addressed the more chance you have of not having any permanent damage. However was severely compressed for 7 years before I finally found a competent Neurosurgeon I thank God every day, so far all his symptoms disappeared immediately and have not returned. He is now 17 months post-op. I know the kids are more resilient and bounce back better and faster, but he was very symptomatic for 7 full years. This I would have thought would have created permanent damage in some areas at least, but NO! I have never heard of a six month window from dx to surgery before damage is permanent. I would say that the sooner the surgery the less chance of the symptoms becoming permanent. Love, huggs, and prayers, Haydee (Nana to , 8 years old w/Spina Bifida, ACM II, Hydrocephalus w/VP Shunt, Tethered Cord, Syringomyelia w/Syrinx @ c1-c2, G-Tube fed, (totally NPO), Swallowing Coordination Disorder, Neurogenic Bladder, ARDS (Lung Failure 3/30/97, 33 days on ECMO (total lung bypass) 60 days on life support, 24 hr-Humidified Oxygen Dependant, Radical Tracheostomy w/total loss of Vocal Cord Use, Paralyzed from the Waist Down, 18 Surgeries, Asthma, Severe Latex Allergy, Allergy to many Medications, Adhesives, and tons of other stuff, Posterior Fossa Decompression, Opening of the Dura, No Graft, c1-c2 Laminectomy , March 2, 1999, so far so good and getting better and stronger every day!!! With Such a Wonderful Love of Life and one crazzzzzy Nana (dx'd so far with Hypothyroidism, GERDS, IBS, Sleep Apnea, Severe Edema)living right outside Baton Rouge, Louisiana) 's Web Page~~~~> The Story http://www.pressenter.com/~chip/joshua.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2000 Report Share Posted August 19, 2000 Hi, This is not specific to Chiari Decompression, as I have not had it...........but I have heard, with Surgery in general, of a 2-4 Year Window. But not a Six Months. I think when you get right down to it, you can't predicit it. Take Care, Brande mymocha@... > I have never heard of a six month window from dx to surgery before > damage is permanent. I would say that the sooner the surgery the less chance > of the symptoms becoming permanent. > ____________NetZero Free Internet Access and Email_________ Download Now http://www.netzero.net/download/index.html Request a CDROM 1- ___________________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 I am in Ohio, but am just getting started myself. In lin County, services come through the I/O Waiver through the MRDD. Keep my email, and if you don't get help before then, I should be back online in a week (we move tomorrow!) Good luck! doulacathya@... > Okay, well, I'm not Jenn but ... > > If there is anyone here that lives in Ohio and can help me figure out > how to get my son services ( Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Debbie - Email me offlist if you would like. I am a service Coordinator for Indiana's Early Intervention program - First Steps and I know a bit about the law if you have some questions I would be happy to find the answers for you. Katrina Kat_Moody@... Re: a million questions........... Jenn, Which state do you live in? All states have different services and even requirements for services. If you'll let me know I'll try to find out. Do you have a parent to parent where you live? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 Katrina, Where in Indiana do you live? We live in Pekin - about 45 min north of Louisville, KY. We went down yesterday to start the paperwork on Medicaid and the autism waivers and all the other stuff. I can tell this is going to be a mess. Each place is telling us the other place is responsibe or something or other. Our appointment is on Tuesday. I really don't like dealing with this. Ughhh! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2002 Report Share Posted July 26, 2002 We live in Thorntown, which is in Central Indiana. I feel for you on waiver paperwork - I'm in the middle of that with my little boy as well. And we're looking at having to pay for some of his therapy out of pocket if we don't get it soon. UGH! I'm not really an " expert " on Medicaid or anything like that - but I can say that I could help you figure out the early intervention program if you would like. And the most important thing - don't sign off on the IFSP if you don't agree with it!!! Katrina Re: HELP! Katrina, Where in Indiana do you live? We live in Pekin - about 45 min north of Louisville, KY. We went down yesterday to start the paperwork on Medicaid and the autism waivers and all the other stuff. I can tell this is going to be a mess. Each place is telling us the other place is responsibe or something or other. Our appointment is on Tuesday. I really don't like dealing with this. Ughhh! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 27, 2002 Report Share Posted July 27, 2002 You may want to contact Easter Seals. I have heard of them providing therapy in some instances. I would also contact your local Developmental Disabilties Office and inquire about Medicaid in your state. > OTHER DISABILITY ORGANIZATIONS Sheila M. Dunn, President > Easter Seal Society of Northeast Ohio > 1929 A East Royalton Road > Broadview Heights, OH 44147 > (V/TTY) > E-mail: eseals@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2003 Report Share Posted February 17, 2003 I have never heard of " people on the Atkins diet tend to die like flies " and very much doubt that it is true. I've been on a diet similar to Atkins and I'm still here. I'm reactive hypoglycemic and pre-diabetic and my adequate protein, moderate fat and lower carb diet has helped me including with some anxiety; I take no medications whatsoever - only supplements. Mike (for Alma) >I had someone tell me months ago that he knew many diabetics who had >absolutely no problems at all after going on the Atkins diet, but >I've also heard that people on the Atkins diet tend to die like flies. > > >Thanks, > >Alma Quote Link to comment Share on other sites More sharing options...
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