tdiu Help With Va Or Non-Va Medical Care Options / Not Getting Listened To / Need Advice

[dav_marine72]

Hi Everyone,

Thanks for taking the time to read this. I am at the end of my line again with VA healthcare and I'm just wondering if I have any options. I don't know how I get myself into these messes but I seem to do a good job of it. Okay so I am 100% P&T. I'm 94% on the schedule and have had TDIU since 2009. My main SC disability is my back / leg issues / pain. I am currently rated 40% Ortho, 40% left leg nerve issue, and 20% right leg nerve issue. Not sure if it matters but I am 50% mental, 30% asthma and a bunch of 10%s.

I had two unsuccessful back surgeries L3-4 L4-5 disectomy (2000) and L3-4 L4-5 L5-S1 fusion with titanium cages (2009). I had a spinal stimulator implanted in 2010. I have been in pain management on high doses of opiates under the care of a non-VA provider 2006-2009 / VA pain clinic 2009-2011 / then back to non-VA provider 2011-2014. I probably should have just stayed with the VA pain clinic but I had access to insurance and quite frankly I don't have to beg or get judged when at my non-VA provider.

The problem started in Jan. 2014 when I lost access to insurance. For 2 months I paid $100 no insurance office visit fees and $500 a month for my medications all while seeking care from the VA for this mind you. I went to my PCP doctor at the VA and asked if she would re-write my prescriptions if I kept going to my outside provider. She declined saying she didn't feel comfortable and didn't like the fact I have a valid CT medical marijuana license for my spinal conditions. I explained my situation and told them I didn't have the money to keep paying out of pocket and I needed to re-connect with the pain clinic ASAP. She kept running me around, asking for a pee test, blood test, etc. She called my outside Dr. and got him mad at me. Finally I got an appointment to a pain management screening with 3 different VA providers which ended up being about 2 months after I sought treatment again for this. They recommended sending me to the ORC (Opiate Reassessment Clinic) and rotating my opiates and possibly trying methadone. I had no idea what the ORC was and was told my local VA clinic now had it's own pain clinic. The pain clinic I was with 2009-2011 was an hour drive away when my local VA clinic is 20 minutes. So I expected to be going to this new pain clinic when I got an appointment. When I arrived I realized I was going to Mental Health in a different area I had never been to and thought it was strange. I asked if this was the right place for the ORC and they said yes. I should have ran right then.

I sat down with two doctors and was told they wanted to put me on suboxone for my pain. Mind you I was in full blown withdrawals by this time as I did not have the $600 to pay out of pocket again and had run out of my meds. I asked them what suboxone was. They said it was a partial agonist Opiate. I was like what is that. They said it does not have any of the euphoria effects like Morphine or Fentanyl patches that I had been on. Honestly I hadn't felt euphoria from my meds since like 2007. My main goal is pain reduction and trying to have some quality of life. They told me only addiction doctors could write this script in the VA hence why I was there. Again being in withdrawals I wasn't thinking too clearly. So I end up starting subxone and they increased me to the max dose of 24mg a day which I have been on ever since.

I actually felt a little better for a while taking it. My body seems to get used to opiates quick and I tended to rotate them somewhat often with my outside provider to get the best pain relief. Then I saw the doctor again and he told me that he had to put down that I was an addict to prescribe this drug to me. I could have went through the roof. I was ready to blow my top. I told him I still had a good amount of pain by then and he thought maybe going to a subxone group meeting would help because some of the patients in there have chronic pain. He said maybe they could help me with coping skills. I said sure why not. Well once I started going I realized that 99% of the people in the group were heroin addicts. I don't have any problem with that per say but I never touched heroin, never ran out of my prescribed opiates, never asked for early refills, no abuse, etc. I suddenly realized I had really gone down a wrong turn and went through months of major depression and just went with the treatment program.

Talking to the counselors in the group they thought I should go on Methadone since my pain wasn't being addressed and felt suboxone wasn't for pain. After researching a ton I see that suboxone does help many people in chronic pain just not me. I spoke to the doctor who had prescribed it for me and he thought methadone was not an option. He asked what had worked in the past. I told him Morphine, Oxycodone, Fentyal, etc. Then he asked why I was sent to him? I said I had no idea I was just trying to re-connect with the pain clinic. He then asked if I was sent there by a court or because I was abusing opiates? I said no. He told me if my story checked out he would call a doctor in the pain clinic at the other VA location and see if they could put me back on regular opiates. Then when I saw him again I asked for a status. He said that doctor didn't call you? I said no. He said thats weird he should have by now. I asked him what his discussion was and he said the doctor didn't think it was a good idea but would call and discuss it with me.

So here I sit three weeks later without a response and after calling the patient advocate who said she would give that doctor a message to call me. I also found out through getting my records that the initial pain intake team labeled me with substance abuse because I was using medical marijuana legally in CT. I have since stopped using the medical marijuana because when on opiates I only needed it now and again. I don't like the feeling it gives me using it daily. I also found a presentation from the doctor that was supposed to call me where he believes in almost all situations suboxone should be used for non-cancer chronic pain. Hence probably why he doesn't want to re-visit. Sorry for the long story but there was no other way to tell this insanity.

I know I can get fee basis to see an outside pain clinic as they have agreed to before. The problem with that is paying for the medication. I know it says you can bring your scripts into your PCP and see if they will re-write them but they already said they would not do this for me. Unfortunately I am on SSDI and didn't know I could have gone on Medicare back in Feb. of this year. Now I would need to wait until January with it not kicking in until July 2015. I feel like I was sorta duped with no one at the VA explaining to me exactly what was going on. Now I seem to have no options. I also run the risk of being refused meds in the future because of the addict labeling. It just seems like being 100% P&T, never abusing my meds, having documentation up the you know what they would be willing to help me with my pain. The RO found my back and leg condition to be the main reason for my TDIU. I feel as I should have some option to complain to someone in authority (not patient advocate) that I'm not being treated for my pain.

I'm very depressed / disturbed over this whole thing. It's making my mental condition much worse. They also took away my benzo because they will not give suboxone with one yet they will give regular opiates. I feel like I'm back to early 2000's as I'm having daily panic attacks and stress because of the severe pain which is why I was put on a benzo in the first place. wish I could go in a time machine.

Thanks for listening to my book. Any advice / feedback is appreciated.