[QUAD-L] voc rehab
i met a woman in a chair from ms that is a greeter at walmart. voc rehab bought her a used dodge rampvan to get to walmart minus 1500.00 she paid herself. i was happy for her but upset inside i was denied any help. but thats life it isnt fair and never will be. ron c7
[QUAD-L] syrinx and craig
im a c7 quad with a syrinx at injury site. i called craig and sent them my mris awhile back. the woman that will talk to you is charlotte starnes, she is a nurse for scott falciwho has done over 1000 syrinx surgeries...he will even send you a statistic sheet of the 1000 surgeries he has done. scott falci at craig agreed to do surgery on me after reviewing the mri. then i find out they wont take united healthcare so im just waiting it out like the othershavent lost any function, but pain sucks. if anyone needs any phone numbers i will dust off my syrinx file, lol..its quite large. ron c7
Re: [QUAD-L] Syrinx
Silas, I also have a syrinx that causes severe pain. I have never lost any function, just had an increase in nerve pain over the years, so finally went to my neurosurgeon to have a MRI 6 1/2 years ago and it showed I had a syrinx. My neurosurgeon decided to try the shunt surgery, which others mentioned that they do not usually try unless you are losing function, but because of my pain level he wanted to see if it would help reduce some of my pain. The procedure went fine, but it did not help my pain at all and I continued to get more pain after the procedure. Nothing helps my nerve pain (cold & hot burning with pins and needles from my chest down to my feet), so I basically have learned to live with it by distracting from it as best I can. I even got a baclofen pump 2 years ago in hopes of adding pain medication to it to help reduce the pain and that has not helped the pain either. So my suggestion is if you're not losing any function, like I was not, the shunt surgery is not worth having. I have read a lot of information about the options when you have a syrinx and the other option is surgery to untether the cord where it is damaged, but only selective hospitals, such as Craig Hospital do the surgery and I've heard that they don't like to do it on quads. Good luck, Corie - Original Message - From: RONALD L PRACHT To: quad-list@eskimo.com Sent: Friday, August 17, 2007 1:04 PM Subject: [QUAD-L] Syrinx Silas, Lori is the syrinx expert but me and Dan also have them. Ive had mine for about 4 years. Basically its complicated yet simple, you either leave it alone and monitor the pain, or you find an expert to collapse the syrinx or put a shunt valve in. I talked with Craig Hospital in Englewood, Colorodothey agreed to collapse the syrinx but wouldnt take United Heathcare.price was 50,000. i had one doc in St. Louis that would do it but he was unexperienced and he would only perform shunt surgery to drain it. All my other docs said the risk was too great to perform surgery on a quad because sometimes you can lose a few levels of function during the surgery. I was also told that most neurosurgeons wont operate unless you report lose of function. Pain isnt a reason for surgery they say...but that is crazy The risk of functional loss during surgery is 10 percent. The possibility of alleviating the pain is 50/50. Ive spent many, many hors researching this. Have read everything on the net. Have a whole syrinx folder. Remember what you have is a Post Traumatic Syrinx, not just a syrinx or a chairi malformation. The spinal injury forms a dormant cyst, then as the years go by the cyst fills with spinal fluid creating the syrinx. The fluid can go in but it cant go out. Any lifting, straining, coughing, bending, breathing can possibly make it worse.crazy but the truth..I about cried when I was first told that. ron c7
Re: [QUAD-L] Syrnix-
Dear Silas, They don't usualy want to do anything unless your losing sensation or movement. That would mean the syrinx is growing upward. If it moves or grows sideways it will cause pain. In most cases it causes pain in varying degrees. We probably all have a syrinx. It is a generalization, but severe spinal injuries almost always cause a deflection in spinal flow which is what they think causes the syrinx. If it stays below your injury and doesn't grow, you can go a long time without knowing you even have it. If it really hurts, tell your doctor. It can cause enough pain to start Autonomic dysreflexia. Good luck with it, john - Original Message From: Silas Shelburne <[EMAIL PROTECTED]> To: quad-list@eskimo.com Sent: Friday, August 17, 2007 3:28:41 PM Subject: [QUAD-L] Syrnix- Hey guys and gals, I had a MRI on Monday and I do have a syrinx- its small but it must be the cause of my pain. I don’t have a clue what to do, maybe you all mite have some input. Thanks Silas Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. http://surveylink.yahoo.com/gmrs/yahoo_panel_invite.asp?a=7
Re: [QUAD-L] mattresses
I swear, in the almost 32 years I've been a quad, it has never been so hard to get help and it has never cost me so much out of pocket since I worked. I watched Bush say children have always been able to go to the ER for treatment and there shouldn't be federal funding to guarentee health care for children. Along with his budget cuts in health care, he has been removing the safety nets put in place under Johnson and Nixon. America now ranks 41 in health care among industrialized nations. Yet America spends more healthcare dollars than the top 20 nations combined. Ohyea, I forgot we have those people selling health insurance that need to be supported. The CEO of blue cross still doesn't have enough private jets to get his dog to the vet for breakfast. john - Original Message From: Ms Linda Ferrell <[EMAIL PROTECTED]> To: quad-list@eskimo.com Sent: Saturday, August 18, 2007 8:01:33 PM Subject: [QUAD-L] mattresses Yes, I guess it is pretty much the same in all states. I just found this out, I have to have stage 4 with gaping wounds before I can get a lateral rotating mattress. Right now I have a KCI Bed, donated to me from a friend who passed away. Last March it bottomed me out & we cannot get it to stay inflated, I think I need 6 cushions replaced. I really miss the lateral rotation. Since Medicaid or Medicare didn't buy the bed they won't fix the bed! So this is where I'm at now. I had a little help from United Way last April but you would not believe the hoops that I had to jump thru! It is sickening! Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. http://autos.yahoo.com/carfinder/
Re: [QUAD-L] Stolen van
That's beacause, You don't have Karl Rove to kick around anymore. lol john - Original Message From: Quadius <[EMAIL PROTECTED]> To: quad-list@eskimo.com Sent: Friday, August 17, 2007 9:42:51 PM Subject: Re: [QUAD-L] Stolen van I have to tell you that I never saw this particular thread going in the direction of Karl Rove and gay marriage. Quadius On 8/13/07, John S. <[EMAIL PROTECTED]> wrote: I think its another one of Carl Rove's plots. Nothing will change a liberal to a conservative faster than stealing his car. That man makes Rick Nixon look like a piker! Was home-sexual marriage a problem? No, but getting it on the ballot got Bush reelected. Conservatives that hadn't voted since Kennedy was elected came out to vote against gay marriage and while they were there,, might as well vote Bush! The man is a conservative genious. The true bain of every socialists existance. He probably has the hitler youth, er, i mean young republicans out stealing liberal vehicles all over America! john p.s. If I were you i'd look in Washington DC. p.p.s. ;-> p.p.p.s. Yea, I take drugs, but i'll watch for your van in Cincinnati. - Original Message From: RollinOn < [EMAIL PROTECTED]> To: Danny Hearn <[EMAIL PROTECTED]>; [EMAIL PROTECTED]; quad-list@eskimo.com Sent: Monday, August 13, 2007 3:31:44 PM Subject: RE: [QUAD-L] Stolen van I didn't get it either Dan, this person just wanted to put the word out that if you hear anything send an e-mail and nothing about giving anything. I'm sure it's insured but now it's a long wait for him to get things back to normal if that's even possible. Mark Jackson RollinOn From: Danny Hearn [mailto: [EMAIL PROTECTED] Sent: Monday, August 13, 2007 1:51 PM To: [EMAIL PROTECTED]; quad-list@eskimo.com Subject: Re: [QUAD-L] Stolen van Why is it hard to believe>? In St. Louis , Missouri area where I live -- a few months ago they stole a Van and a disabled childs powerchair with it. In the U.S.A. cars , vans and trucks get stolen every several minutes around the clock.Criminals do not care if it hurts you or leaves you helpless or even causes you to die. A paraplegic friend of mine had someone steal his roho seat cushion causing him to get pressure sores. Dan H. [EMAIL PROTECTED] wrote: In a message dated 8/13/2007 12:16:58 P.M. Central Daylight Time, [EMAIL PROTECTED] writes: Were is an article or police report confirming this story? sorry I just don't trust ppl that much... this could be a publicity stunt to get a new van/chair sorry but life has turned me skeptical me Being suspicious is my natural nature too, lol. This happened in Mass if I read the article correctly and I'm sure that a police report was done. Often the internet is faster than the news press for getting info out. Try wheelchairjunkie.com for additional info on this incident. Remember when they used to shoot horse thieves... ? What about car thieves.. Best Wishes W Get a sneak peek of the all-new AOL.com. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.17/951 - Release Date: 8/13/2007 10:15 AM No virus found in this outgoing message. Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.17/951 - Release Date: 8/13/2007 10:15 AM Shape Yahoo! in your own image. Join our Network Research Panel today! Park yourself in front of a world of choices in alternative vehicles. Visit the Yahoo! Auto Green Center. http://autos.yahoo.com/green_center/
Re: [QUAD-L] VR & returning to work
Dear Dianna, Ohio Rehabilitation Services is the layer of bureaucrats that operates the Bureau of Vocational Rehabilitation. You can't say there aren't enough bureaucrats getting fat from trying to get jobs for all those social leeches and welfare bums and mental defectives,,er,, I mean needy clients. That's how they made me feel. Maybe they will be nicer to you. I had a lot of problems with brain injury and spinal injuries as well as bones deforming, and whats worse, I'm pretty flat chested and a guy. I've seen them buy new vans for disabled women so they could get to school. Well, it was beauty school and they needed a van for there kids. The ladies disability was numbness in her left arm. If you want to be a greeter at walmart,, they could be the perfect people. I sure wish you luck, and get a voice activated tape recorder. If you think your counselor is a boob, get a new one fast. I did get a job after dealing with them, but it was because I gave up on them ever being any help. I've heard they do good jobs for mentally disabled and criminals. ORS Will send you to BVR. Maybe they will prove me wrong. I wouldn't mind. I'm serious about the tape recorder. good luck, john - Original Message From: "[EMAIL PROTECTED]" <[EMAIL PROTECTED]> To: quad-list@eskimo.com Sent: Friday, August 17, 2007 9:49:38 PM Subject: [QUAD-L] VR & returning to work I kow we've discussed VR much in the recent past & what they'll help us with and such. Has anyone tried Ohio Reabilitaion services commission? I 'think' that is where you get help with college or vans. Wheel knows ALL the strings but he's been silent :-). I 'believe' VR sends one there & of course receives their $ kickback. Dianna Get a sneak peek of the all-new AOL.com. Be a better Heartthrob. Get better relationship answers from someone who knows. Yahoo! Answers - Check it out. http://answers.yahoo.com/dir/?link=list&sid=396545433
[QUAD-L] mattresses
Yes, I guess it is pretty much the same in all states. I just found this out, I have to have stage 4 with gaping wounds before I can get a lateral rotating mattress. Right now I have a KCI Bed, donated to me from a friend who passed away. Last March it bottomed me out & we cannot get it to stay inflated, I think I need 6 cushions replaced. I really miss the lateral rotation. Since Medicaid or Medicare didn't buy the bed they won't fix the bed! So this is where I'm at now. I had a little help from United Way last April but you would not believe the hoops that I had to jump thru! It is sickening!
Re: [QUAD-L] Suprapubic
Hello, I had an indwelling cath for around 17yrs. & had lots of problems.Around 3 or 4 years ago my uroligist gave me a suprapubic catheter. I have had less infections since then. Lindaf
Re: [QUAD-L] Regarding superpubic
In a message dated 8/18/2007 12:35:19 P.M. Central Daylight Time, [EMAIL PROTECTED] writes: I agree that Craig hospital is your best bet even if you are not close to them. Just give them a call and ask to talk to the urology department. They are very nice and should answer your questions even if you've never been there. I bet they suggest a superpubic, just to let your urethra heal. Debbie C4 incomplete/April 2005 Anyone of the 5 National SCI Hospitals are good. Kessler, Shepard, RIC, Craig and Rio are known for their expertise. Or you can contact your local SCI District Office for those UROs that specialize with Quads. Best Wishes ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
[QUAD-L] Regarding superpubic
I agree that Craig hospital is your best bet even if you are not close to them. Just give them a call and ask to talk to the urology department. They are very nice and should answer your questions even if you've never been there. I bet they suggest a superpubic, just to let your urethra heal. Debbie C4 incomplete/April 2005 - Yahoo! oneSearch: Finally, mobile search that gives answers, not web links.
