All I have is a primary doc I see once a years and a pain doc I see 4 times a year. When I was admitted to the hospital for a burst appendix no one in the hospital had ever heard of it and I mean no one.
Ron On Thursday, December 4, 2014 10:15 AM, Larry Willis <[email protected]> wrote: Your doc never heard of dysreflexia? I believe some education is in order. Sent from my iPad Begin forwarded message: Resent-From: [email protected] >From: Danny Hearn <[email protected]> >Date: December 4, 2014 at 10:49:22 AM EST >To: RONALD L PRACHT <[email protected]>, "[email protected]" ><[email protected]> >Subject: Re: [QUAD-L] Autonomic Dysreflexia >Reply-To: Danny Hearn <[email protected]> > > Your so right Ron, just because we can move our heads and our arms...folks think we can or should do most anything, It's too complicated trying to explain it all-some say how do you have all this horrible pain if your paralyzed and can't feel? many are the same people asking the same questions they had asked a year or so earlier.(they will never understand ) Meanwhile........I'm still getting Automomic Dysreflexia on and off for about a 2 week period, my Primary Doc. checked me and did some bloodwork but found nothing abnormal..I'm driving my poor wife insane because I'm having so much problems at night and we get little rest and she has to get up and go to work. We both THINK it has something to do with me getting air or gas in my Stomach-----We are not sure why, If she sets me up I begin to burp it out--It's strange because I have rarely got air or gas in over 17 years post. I'm thinking of getting a urine culture or checking with Urologist, to see if it can be bladder or kidney related? I'm at a loss to know what to do, plus my Urologist never heard of disreflexia. Well, I'll go for now gang...feel free to comment if you have any Idea's on this. Thank You. Dan H***** > > > >On Thursday, December 4, 2014 2:40 AM, RONALD L PRACHT ><[email protected]> wrote: > > > >Most people think if your arms work at all you are a paraplegic from the waist >down. They believe that a quadriplegic has no function from the neck down. By >the time you argue your point across , they just look at you like a deere in >headlights and might snub you the next time you meet them. I let a lot go now >unless someone downright insults my rights as a human being to share air >equally with them. > > > >On Thursday, December 4, 2014 1:03 AM, Nadeana Halamar <[email protected]> >wrote: > > > >thats so fd i wish their was a way to get things out about us and some think >paras and quads r the same > > >On Tue, Nov 25, 2014 at 10:27 PM, RONALD L PRACHT <[email protected]> >wrote: > >There are many reason doctors wont operate on a quad >> >> >>1) Much more risk involved of failure or complications >>2) Some doctors don't want to be involved with risky patients when they can >>just stick with standard cases. >>3) Some doctors fall on the saying, " your a quad that's the reason you have >>pain" >>4) If they make a mistake with a syrinx you could end up further paralyzed >>which I don't know if the risk is as much as thy scare you with. >>5) Many quads don't have good insurance and the bills get in 6 digits real >>quick. Its a loser for the hospital. >> >> >>The same reason some pilots wont fly with a quad on board. >> >> >> >> >> >>On Tuesday, November 25, 2014 7:45 PM, greg <[email protected]> wrote: >> >> >> >> >>What does being a quad have to do with not operating? >>I'm a quad and have had a few operations. >>Not for my syrinx, but he doc said I should when needed. >>Greg >> >> >>> I started having pain ten years ago. Im scared to get an mri and >>> see whats going on. The doctors here in St. Louis at Washington >>> university wouldn't operate on me at that time because I was a >>> quad. I just wanted them to drain my syrinx and see if it helped. A >>> girl I know that's a para had the same thing as me and she got >>> help. It all sucks but just take it one day at a time. >>> >>> >>> Ron >>> >>> >>> On Monday, November 24, 2014 7:59 AM, alcibiates2 >>> <[email protected]> wrote: >>> >>> >>> I was told it was disintegrating disc disease. There's no cure for >>> it. It causes nerves to be pinched as well as making it impossible >>> to position comfortably. Spending long times sitting in the chair >>> is really painful.I'm to the point now where I get out of bed for a >>> couple hours each day. >>> Best wishes. >>> john s >>> >>> >>> Sent from my Verizon Wireless 4G LTE smartphone >>> >>> >>> -------- Original message -------- >>> From: Danny Hearn >>> Date:11/24/2014 5:44 AM (GMT-05:00) >>> To: alcibiates2 ,[email protected] >>> Subject: Re: [QUAD-L] Autonomic Dysreflexia >>> >>> John, I read that many quads develope disc problems in their backs, >>> did they do anything for yours or do you just get by as best you >>> can with that?? thanks, Dan** >>> >>> >>> On Sunday, November 23, 2014 6:55 PM, alcibiates2 >>> <[email protected]> wrote: >>> >>> >>> Dan, I've had some fractures that were almost >>> undetectable but really sent my bp up and pulse way down. Just the >>> weight of my foot separated my tibia at the mantle below the knee. >>> Chalky bones and deterioration of spinal disc's have played hell >>> with me. Try sitting straight up and take something for pain. Don't >>> recline until your pulse returns to your normal never be afraid to >>> 911 yourself to an er. >>> Tip:take a copy of a medical definition of AD with you along with >>> your med list. I swear they can be pig ignorant of what is going on >>> and what to do. Help has gotten ambivalent in Cincinnati. >>> Best Wishes, >>> John s >>> >>> >>> Sent from my Verizon Wireless 4G LTE smartphone >>> >>> >>> -------- >>> Original message -------- >>> From: Danny Hearn >>> Date:11/23/2014 4:42 AM (GMT-05:00) >>> To: [email protected] >>> >>> Subject: [QUAD-L] Autonomic Dysreflexia >>> >>> Man, I hate having dysreflexia and unable to find the cause, I have >>> been having it on and off for about 3 days and have had almost no >>> sleep for the last 2 days. Bladder and bowels all seem fine-no >>> pressure sores or etc. that we can find. When I try to lay down at >>> night after a while I get real hot and clammy, my heart begins to >>> pound and act up. I do have a syrinx and bad neck and back pain but >>> not sure if that can be the problem. I guess Monday I'll try to >>> call my primary doctor and get checkup and bloodwork for a start, >>> This stuff is depressing and drives my wife crazy making her lose >>> sleep also, plus she is a caregiver to an elderly woman with >>> alzheimers 4 days a week. This >>> Quad related stuff can be so challenging >>> at times ! Well I guess i'm done venting...it's about 3:45 am. Hope >>> To get better before long. Dan H*** >> >> > > > > >
