I'm Wrecked & Bonkers!

[Jules22871]

Originally Posted by MaryKay

Jules, Mike has been dealing with the V.A. on a regular basis for a while and he gets very good care! Well he did until his newest Dr.
This guy is at LEAST 16 and doesn't know his where to put his thumb yet! He is dealing with men and women who could probably kill him with a paper clip and he acts like they are 12 year olds. Just because you are retired (at age 38) doesn't make you a doddering old person. And just because you graduated from med school only means you have a good memory..not skills!

The level of care..before Dr. Doogie came along was outstanding. They have tested him for everthing from his eyes to agent orange. I told Mike to try to switch primary caregivers.

MarKay,

My husband is combat disabled so I don't know if this makes a difference or not, but he was able to change his primary doc at the VA in Murfreesboro, TN. That made me very happy since the doc he had at the time told us he had Hep C and had less than a year to live, which was about as wrong as you could get. We got told that just 3 weeks after we got married and just 2 months after I lost my mother in a house fire. I was a mess mentally from it for quite awhile until I did some research on Hep C and found out that he could live a good long time with it. All of this was over 5 years ago. We were allowed to pick the ortho doc that did his knee replacement so he didnt have to wiat 2 years for a VA ortho to do it. He had a great ortho at Vanderbilt that fixed it right up. Not sure yet on if there is going to be a price change on his co-pay for his meds but he was/is paying $7 for each script.

The only complaint have about the VA he goes to, is if you don't keep on them they move at a snail's pace getting anything done.

Just this month, they have raised him to 100% disabled so we got a significant increase in his check which now makes it able for us to start house shopping! I can't wait to get started.

[Walrus]

Originally Posted by MaryKay

Walrus, Unless your meds are service connected, they aren't free. Mike doesn't pay for connected stuff but the rest is a bit less then Tricare. I refuse to do the med by mail thing because of mixups, but he has to. His controlled stuff is the worst! They are forever messing that up making him go to Orando for the day (40 miles above us).

Mine were all free, since I'm 100%. Either that, or I'm so screwed up that no matter what I go for, it's service connected. But I think it's the former.

[MaryKay]

Mike is 30% but if we can ever get someone to do a re-evaluation I am sure he will go way up. it's been years and years since they evaluated his status. meanwhile they keep giving him more and more medication. He has called the local V.A. guy everyday for 3 months trying to get a face to face!

[Walrus]

I was 100% from the get-go. I had everything taken care of before my 'retirement'. Actually started getting paid just one month after my separation.

Oh... the latest. I had EMG tests done earlier this week... turns out I also have "Ulnar Nerve Entrapment". It's the source of pain in my left arm... from the collar bone to my finger tips. Imagine hitting your funny bone hard enough for the pain to go all the way up and down... and make it permanent. I guess if there's anything good about it, it's that at least for now the C8-T1 nerve root isn't involved.

I now have to meet with my Neurosurgeon again. I'm told there's a surgery that can move the Ulnar nerve from behind the elbow to on top to alleviate the pain.

[jen28f]

Well, since everyone is telling what their particular wreck or boink is, mine is also the back thing...surgery in 84 (at the age of 14) and another in 2002, which made it worse. Since 11/08 I have been on SS disability. I am 39 yo.

At this point, they are telling me I need more surgery...which I flatly refuse until someone can guarantee me that it wont make it worse...I have 5 discs, 4 in lumbar area and 1 cervical, that seem to be the problem...of course, like all others with the back thing, there is stenosis, bulging, ruptures, ddd, arthritis, etc, etc.

My mother wants me to try that drx 9000. Have you seen this thing? The though of being put on a rack does not appeal to me. I mean, ok, so they stretch you out while you are on there, but once you stand up, doesnt it just all just mush together again? And if there is a chance that the bulging or whatever discs that are trapped in there might pop out for good, then isnt there also a chance something that isnt currently in there might pop INTO the space? Like scar tissue, bone fragments, etc??

I am currently on methadone and norco. Methadone has helped me more than any other drug in 25 years, but it can only do so much.

I live near Pittsburgh now, but moving to AZ for warmer weather, cold just kills me.

Have you others with this type of thing tried other meds/therapies that have really worked? Are those of you with back problems also on SS? Any suggestions, pearls of wisdom, etc?

I have no local groups or anything so this is very cathartic for me. Thanks!

[MaryKay]

Jen, Welcome! If you have a good Chiropractor you can talk to..not ajust you! That may be of some help, my ex is one and he explained why Mike (hubby) couldn't have certain procedures done on his back. He also helped with Mom's osteo problems by steering her in the right direction..he wouldn't touch her because of the fragile bones.

[hsmamato2]

Jen,

I'm so sorry you are going through all of this. It's nice to support each other but it makes me sad to know someone else is suffering. You are so young too! My back issues seem similar to yours without the surgeries. I can't get anyone to give me more than a 33% chance of improvement so I won't do it.That was before I had every disc in the lumbar spine involved.

No one incident caused it, just a lifetime of injury and re-injury. I also looked into the DRX-9000.( At my mother's insistance lol) I felt the same way about it. It might be OK with a simple herniation but with the complication of spinal stenosis I'm not so sure. I know of a young man who was injured who claims to have gotten much relief from it but again his was a short term, uncomplicated back injury.

I wish I could tell you "I did XYZ and I'm so much better." I can't. I just get up each day and say I'm going to do as much as I can today. Enjoy my kids and my life as much as possible and try my best to keep the pain at bay.

I bet the change of weather will help you a lot. I've had the worst Spring and Summer ever this year. We need some sunshine on the East Coast already!

Hope you are having a low pain day,
Mel

[je_jooster]

...for those with chronic pain, there's a relatively new device that may help. My husband suffered a back injury, had surgery, but unfortunately the damage was done. He suffers with FBS (Failed Back Syndrome) and the drugs just don't cut it. So he got what's called a SCS - Spinal Cord Stimulator. This website is the Doctor's information page. It has links for the SCS as well as the Itrathecal drug Delivery Pump (also for chronic pain relief). You can browse by device or condition to see what's available.
Husband had his SCS implanted in Nov. '08. First you have aPsych evaluation to make sure you don't expect this thing will 'fix' what's wrong, 'cause it won't and some people can't wrap their head round the idea of having something permanently implanted, then do a 3 day trail to see if it's effective for you. He had relief while still on the operating table! Said it was like night/day when they turned it on. Since then, he went from 40mgs of Methadone/Day down to 5-10mgs, and then only on REALLY bad days. My husband's was implanted by an Anesthesiologist who specialized in Px management. The leads run up next to the spinal chord and are connected to a battery that's implanted under the skin. The battery re-charges through his skin by placing the re-charger on the skin over the battery. Life expectancy on the battery is about 10 years. You control it with a remote (I know, I hear you, 'Oh great, another remote control!' but this only works on the SCS, you can't change TV channels with it!)
The remote can be programmed with multiple programs to control the pain in multiple areas and intensities. It works because the small electrical stimulation interrupts the pain signals being sent to the brain. What you feel instead is a tingling in those areas affected. If you've ever used a TENS unit (Transdermal Electronic Nerve Stimulator) it's a similar sensation.
The Intrathecal Drug pump works in a similar manner, but it pumps drugs directly into the area, so you can use as little as 1/300th the amount of the usual oral dose and still achieve the same amount of pain reduction.
So here's the website for your investigation, and Medtronic isn't the only Co. making these, but they all work on very similar principles:
Medtronic Healthcare Professional Website

[AngeLsLuv]

Originally Posted by je_jooster

...for those with chronic pain, there's a relatively new device that may help. My husband suffered a back injury, had surgery, but unfortunately the damage was done. He suffers with FBS (Failed Back Syndrome) and the drugs just don't cut it. So he got what's called a SCS - Spinal Cord Stimulator. This website is the Doctor's information page. It has links for the SCS as well as the Itrathecal drug Delivery Pump (also for chronic pain relief). You can browse by device or condition to see what's available.
Husband had his SCS implanted in Nov. '08. First you have aPsych evaluation to make sure you don't expect this thing will 'fix' what's wrong, 'cause it won't and some people can't wrap their head round the idea of having something permanently implanted, then do a 3 day trail to see if it's effective for you. He had relief while still on the operating table! Said it was like night/day when they turned it on. Since then, he went from 40mgs of Methadone/Day down to 5-10mgs, and then only on REALLY bad days. My husband's was implanted by an Anesthesiologist who specialized in Px management. The leads run up next to the spinal chord and are connected to a battery that's implanted under the skin. The battery re-charges through his skin by placing the re-charger on the skin over the battery. Life expectancy on the battery is about 10 years. You control it with a remote (I know, I hear you, 'Oh great, another remote control!' but this only works on the SCS, you can't change TV channels with it!)
The remote can be programmed with multiple programs to control the pain in multiple areas and intensities. It works because the small electrical stimulation interrupts the pain signals being sent to the brain. What you feel instead is a tingling in those areas affected. If you've ever used a TENS unit (Transdermal Electronic Nerve Stimulator) it's a similar sensation.
The Intrathecal Drug pump works in a similar manner, but it pumps drugs directly into the area, so you can use as little as 1/300th the amount of the usual oral dose and still achieve the same amount of pain reduction.
So here's the website for your investigation, and Medtronic isn't the only Co. making these, but they all work on very similar principles:
Medtronic Healthcare Professional Website

I want one of those but the doctors around here are idiots and don't understand anything about the pain a person is in with RSD, Poly Neuropothy, and a nasty back (from breaking my T-11, T-12, L-3, and L-4, along with the scoliosis due to the breaks).. The closest decent doctor I can see is about 2 and 1/2 hours from me and he has a 24 to 28 month waiting list... I would get myself on the list for an appointment but the trip is just too long at this point for me to ride or drive which makes me mad since I used to go down there (to Philia) all the time for concerts....