out to pasture

[whiterabbit11]

I'm a C-7 quad and worked all my life, but after3 divorces from women who don't mind the wheelchair life until after a couple years experience, I am notrich enough for anything fancy when my shoulders give out completeley. Most sci's stayed as permanant residents of the V.A. when they, like me, got planted there during the 60's during our Vietnam days. I did a year there and came home to celebrate my safe return and wrecked my car so I'm Non service connected. Where does someone like me go when the last ligament in the shoulder pops in two? My past experiences with the V.A didn't thrill me at all. They're not real sympathetic or generous with painkillers or Anything for that matter. Anybody who knows what happens to worn out quads

[fred]

Get on Medicare or Medicaid. F--- the VA. Move from Wyoming & make it your job to find a shoulder specialist. Maybe Craig Hospital in Denver can help. I know that sometimes they will take secondary coverage (Medicaid) from adjacent states. I'm not a vet, so I don't know the details of doing this. I'm going to keep this short, b/c I don't know your details. What impressed me about your inquiry was,
1) you still want to push; and 2), you've actually married three times since your injury. Sorry if it seems I'm mouthing off, but I get a bit testy when I see someone w/SCI whose motivated & spinning their wheels. Ask for an e-mail address or phone # if I can help.
o

[SCI-Nurse]

Don't tar all VA SCI centers with the brush of your past experiences. The VA has changed a lot since Viet Nam, and every SCI Center and VA Medical Center is different. You are entitled to VA prosthetics coverage for equipment such as power chairs, etc. and to care at any VA SCI center you choose to go to, even if you are NSC. Because you have a SCI you should be rated no higher than a category 4 veteran, which is a mandated care level. Of course if you have a high income you may have a small co-payment for some services, but this will be less than your co-payment for Medicare services.

Contact your PVA NSO and have a long talk about what resources you are entitled to and where you might want to go for better care than you have had in the past. While you certainly can use your Medicare (and Medicaid if you have it) for outside care, the VA will never provide better care unless veterans use it and complain loud and long if they are not getting good care. The PVA is your best advocate, and they do have the ear of the VA system.

(KLD)

[BJ]

Check with the local VA, I know a friend in Ft. Collins, CO who was non service SCI was able to get a referal from Denver VA to Craig Hospital. He had to argue a bit but got it, and the VA picked up the tab for: first - cord untethering, then nerve blocks by Falci, new powerchair, and the associated PT and OT following the surguries til he was able to take care of himself again. Lucky (?) for him he was an incomplete para who under good conditions could stand at least. But unlucky(?) for him he had normal sensation

[whiterabbit11]

I thank all of you for your replies and advice. I can't say the V.A. was all bad. I tried to get a pressure sore healed locally with a fly-in plastic s. from Denver and after several rties he said I was running out of skin and wanted to do a hemi-something which was Doctor lingo for cutting in two. No Butt, hence;no sores. After giving him the one finger salute I checked into the Clement Zabloscki sp? V.A. in Milwaukee who healed it up with bedrest and diet. It took 6 months so I lost my job as a public defender for State of wy. When I came home I was about a day away from the homeless shelter whenthey got a full time opening and hired me back. After a month of sitting full time it came back and I nursed it for 8-10 months till I was hospitalized with high fever and they tried locally, the bedrest, diet stuff. it healed in 3 months, I went to work and within 2 weeks I was back. It healed over the top and exploded. The local Orthopedic surg. said osteomyelitis and again my local doc wanted to amputa\te-also he was anti demerol which was all that helped me through pain and miserable A.D. The Ortho. Surgeon, brand new and gung ho said don't spare the Demerol which made me comfortable- killed the A.D and pain given I.V. he did surgery, cut off a chunk of bone and after 5 years I still have both legs and no sores and work as a full-time prosecutor. During the last 3 years though I had 2 shoulder surgeries and one severe spasm battle that lasted six months sort of together. All that stopped the spasms was 50mg I.V. Demerol so i had to fire the Anti-Demerol m.d. who is now named defendant. My new doc didn't spare the demerol, made me comfortable and got me to a Rapid City S.D neurologist and a baclofen pump. In 2000 and 2001 though I used maximum madical leave time under federal law and now the boss and county commissioners nearly have a stroke if I sneeze. The other lawyers don't want my caseload again and my Med. Bills have the group ins. plan looking for any excuse to get me off the list.I just do lots of worrying, being afraid to take off looking for a shoulder doc. My job maintains my sanity. Back to the V.A., i was in The Milwaukee sci unit in '97 and found a few good nurses, a few mediocre ans lots of lazy, if not downright mean ones. The docs were good If you could get 5minutes every other day with them, the good help and good docs complained of antique equipment,severe cuts in help and money. I suppose they did the best they could with what little money they had. the paint was falling off the walls and pain help or any help was a ,long time getting there- I felt guilty asking. Got sick of them saying "be right there" and another patient telling me they were drinking coffee and b.s'ing with each other. Yeah, the PVA reps dropped in and you could bitch, but then you paid for it. Like I said SOME of the staff were caring and excellent, but they couldn't take care of eveyone and "pain control" was never a priority. As I also said some civilian places weren't much better so maybe it's a matter of luck. I'm just not looking forward to depending on people who don't give a s-t. Thanks for listening, it helps after 35 years I'm just hoping to get lucky. By the way, I've got lots of advice if anybody's interested. WR

[whiterabbit11]

Fred,
Just a short one for you. I do dstill want to push. I had an electric after shoulder surg. and it sucked. I'm a little worried about the 3marriage thing. I think that's a sign of stupidity or someone who doesn't llearn from experience. Thanks again wr

[bigreel]

Originally posted by whiterabbit11:

I thank all of you for your replies and advice. I can't say the V.A. was all bad. I tried to get a pressure sore healed locally with a fly-in plastic s. from Denver and after several rties he said I was running out of skin and wanted to do a hemi-something which was Doctor lingo for cutting in two. No Butt, hence;no sores. After giving him the one finger salute I checked into the Clement Zabloscki sp? V.A. in Milwaukee who healed it up with bedrest and diet. It took 6 months so I lost my job as a public defender for State of wy. When I came home I was about a day away from the homeless shelter whenthey got a full time opening and hired me back. After a month of sitting full time it came back and I nursed it for 8-10 months till I was hospitalized with high fever and they tried locally, the bedrest, diet stuff. it healed in 3 months, I went to work and within 2 weeks I was back. It healed over the top and exploded. The local Orthopedic surg. said osteomyelitis and again my local doc wanted to amputa\te-also he was anti demerol which was all that helped me through pain and miserable A.D. The Ortho. Surgeon, brand new and gung ho said don't spare the Demerol which made me comfortable- killed the A.D and pain given I.V. he did surgery, cut off a chunk of bone and after 5 years I still have both legs and no sores and work as a full-time prosecutor. During the last 3 years though I had 2 shoulder surgeries and one severe spasm battle that lasted six months sort of together. All that stopped the spasms was 50mg I.V. Demerol so i had to fire the Anti-Demerol m.d. who is now named defendant. My new doc didn't spare the demerol, made me comfortable and got me to a Rapid City S.D neurologist and a baclofen pump. In 2000 and 2001 though I used maximum madical leave time under federal law and now the boss and county commissioners nearly have a stroke if I sneeze. The other lawyers don't want my caseload again and my Med. Bills have the group ins. plan looking for any excuse to get me off the list.I just do lots of worrying, being afraid to take off looking for a shoulder doc. My job maintains my sanity. Back to the V.A., i was in The Milwaukee sci unit in '97 and found a few good nurses, a few mediocre ans lots of lazy, if not downright mean ones. The docs were good If you could get 5minutes every other day with them, the good help and good docs complained of antique equipment,severe cuts in help and money. I suppose they did the best they could with what little money they had. the paint was falling off the walls and pain help or any help was a ,long time getting there- I felt guilty asking. Got sick of them saying "be right there" and another patient telling me they were drinking coffee and b.s'ing with each other. Yeah, the PVA reps dropped in and you could bitch, but then you paid for it. Like I said SOME of the staff were caring and excellent, but they couldn't take care of eveyone and "pain control" was never a priority. As I also said some civilian places weren't much better so maybe it's a matter of luck. I'm just not looking forward to depending on people who don't give a s-t. Thanks for listening, it helps after 35 years I'm just hoping to get lucky. By the way, I've got lots of advice if anybody's interested. WR

You certainly have had a rough ride. Here's what I did when a local physician misdiagnosed me and left me T 10/11 parapalegic. First, get a ROHO cushion to sit on. Properly inflated, I sit on it for 12 hours without sores. Next try a Select Comfort air matress. Reasonably priced, don't have to roll every 1.5 hours during the night. Again, no sores. Then look at the Alber "e-motion" chair wheels from Frank Mobility in Pennsylvania. After blowing out a rotator cuff in my left shoulder requiring surgery these take the strain off and fit a standard chair without the weight and cumbersome power chair look. The Telon coated transfer boards complete the package for to/from transfers, reducing effort tremendously. Just a suggestion. Stev