How Many Milligrams Are You On?

[ajspine]

Hi Guys,
Just came across this as I spend most of my time on the iSpine forum. First, Eddie, Congrats on coming off the opiates, this is great. And I have heard some wonderful things about medical maryjane. I am currently going through hell with the VA because they switched me from 5mg Oxycodone HCL 2 every 6 hours(40 mg a day) to 10/325 Hydrocodone one every 6 hours. The Hydrocodone does NOT work for me and from what I have been reading the dosing is way off. I have to take 2 to almost get relief but I can't do that because that is not what I am prescribed. it also has APAP, which makes me worry about my liver and kidneys.
I tried this for 8 days then called my Dr to switch back and he was gone on Vaca until today(I have an appointment this afternoon) and I had to go the VAMC 2.5 hours away to have the Chief of Staff fill my meds because no one else would fill them while my Dr. was gone.
This med change left me crying in bed for days and I have had to take an incomplete in both of my Grad school courses. I have finally pushed for approval for treatment at a Civilian Pain clinic in the town I live in. I should not have to beg for pain relief but the VA is on tear when it comes to opiates and true chronic pain patients are losing their meds. It is unbelievable what they put us through.
I wish I had the option to try Mary jane for my pain but the VA is federal and if I get caught I will loose all of my benefits. Once again, Congrats!
AJ

[Ringo]

I am sorry to hear about your struggle. Thank you very much for your service to our country!!! And, welcome home!

I am terribly sorry that you are struggling with the VA. Unfortunately, you are not alone. The VA hospital is an unusual place in many situations. I have run into very compassionate people and I have run into people that simply are cruel and should not be taking care of other people.

Yes, you need a pain specialist. There is a formula that should be used to calculate the dose when moving from oxy to hydro's. Those are entirely different birds. One is a lamborgini or bugati and the other is a 50 year old schwin 10 speed bike.

Yes, it would be great if you had a pain specialist that is good at managing and explaining your options and managing your pain. The VA usually doesn't have them. If you have problems, contact the patient advocate at the hospital. That is sometimes an option. It is also an option to write your State Senator or Congressmen or threaten that you will .

Personally, if you are on that much Oxy, that should be managed by a pain specialist. They might be trying to get you off the Oxy because your dose requires a pain specialist and they are being told to first try to get you to a lower dose before ordering a pain specialist . Obviously, the goal is to keep you on the minimum amount of narcotics. A pain specialist can also recommend other forms of relief that you might benifit from (electric stim, narcotic pain pump, nerve blocks and nerve ablations, nerve ligation, non-narcotic medication (lyrica), etc. The area of treatment is growing fast.

I love your picture..... looks like you have some wonderful friends. Stay close to them. Please know that chronic pain is very debilitating and can greatly effect your ability to take care of yourself now and in the future. It effects you both mentally and physically. I am especially sensitive to this since I am assuming that your injuries are military related. If you are not service connected, get service connected. You should have a Veterans Service Officer or Attourney that can represent you to the VA (you might already have this set up). Please Please keep a diary. You just stated that you had to take an incomplete in two classes. That is a perfect example/evidence of how your injury is effecting your ability to provide for yourself. You sound like you are suffering and struggling.

In the future, you might struggle with employment or providing for yourself. You do not need to be fully disabled to qualify for unemployability. The VA will not tell you this stuff. Unfortunately, they are encouraged not to inform you of your options with regards to your rights for benefits. They will make you do that yourself and it can be a "war" all of its own .

If you have anything done or put into words by a physician and it is military related or secondary or tertiary to a military injury (ie. chronic depression/anxiety related to pain related to shoulder injury; or fatigue/loss of labido/sexual disfunction secondary to depression or medications, etc, etc) try to have your doctor make statements that relate it to the primary injury. They rarely do this. For example, have them say, "Pain is more likely than not related to shoulder injury; or insomnia is more likely than not related to chronic pain and depression."

A severe shoulder injury can easily cause pain, depression/anxiety, lethergy/fatique/brain fog/inability to concentrate, insomnia, immobility, loss of work or inability to maintain gainful employment and sexual disfunction (sorry, I seem to be hung up on that sexual disfunction thingy ). And all of this will either be directly related to or seconarily related to the injury or medical management of the injury.

You are my hero! I just want you protected as much as you protected our country and our freedom!

Terry

Originally Posted by ajspine

Hi Guys,
Just came across this as I spend most of my time on the iSpine forum. First, Eddie, Congrats on coming off the opiates, this is great. And I have heard some wonderful things about medical maryjane. I am currently going through hell with the VA because they switched me from 5mg Oxycodone HCL 2 every 6 hours(40 mg a day) to 10/325 Hydrocodone one every 6 hours. The Hydrocodone does NOT work for me and from what I have been reading the dosing is way off. I have to take 2 to almost get relief but I can't do that because that is not what I am prescribed. it also has APAP, which makes me worry about my liver and kidneys.
I tried this for 8 days then called my Dr to switch back and he was gone on Vaca until today(I have an appointment this afternoon) and I had to go the VAMC 2.5 hours away to have the Chief of Staff fill my meds because no one else would fill them while my Dr. was gone.
This med change left me crying in bed for days and I have had to take an incomplete in both of my Grad school courses. I have finally pushed for approval for treatment at a Civilian Pain clinic in the town I live in. I should not have to beg for pain relief but the VA is on tear when it comes to opiates and true chronic pain patients are losing their meds. It is unbelievable what they put us through.
I wish I had the option to try Mary jane for my pain but the VA is federal and if I get caught I will loose all of my benefits. Once again, Congrats!
AJ

[ajspine]

Hi Terry,
Thank you for your reply and if you are also a Vet, I sincerely thank you for your service also. I have been service connected for my heart and my mental anxiety and agoraphobia(anything to not call it PTSD) for 6 years now. I have been a Vet for 10 years for the first 4 years I was too sick to fight with them and my ex husband was still active duty so I still had access to complete health care coverage. I am in contact with my VSO and meet with them again on Thursday.
I woke up one day 3 years ago this summer and could not move my neck and was so ill from a head ache I landed in the VA ER, they were of no help, just Xrays that showed I had DDD in my neck. Went and cried for another week and finally went to see my PCP, he ordered an Emergency MRI for that day. 3 herniated disks, 2 bone spurs compressing my spinal cord and nerve roots. For the exact diagnosis I would have to dig out my med records which I am later today and sending a copy to Mark.
My Dr. got me in with Neurosurgery within the week and he started me on the Hydrocodone, which worked just fine in combo with Motrin. The Neurosurgeon blew me off(he know longer works there, have no idea why) and i was sent home on pain meds, PT and ice and heat.
Another year went by and the pain grew worse, then I couldn't feel my thumb and my left arm just falls asleep for no reason. Another MRI and thing are much worse and surgery is recommended, ADR at the C5/C6 level. They said we will deal with your Neck(which they only partially did because I need another ADR and have two more herniated discs). The wait for this surgery was almost another year and rescheduled once due to Surgeon availability. During this time my headache was constant, no feeling in my left thumb and waking up 2/3 times a night with arm pain that made me vomit.
Finally, Surgery-7 months ago. Only relief is from the debilitating headaches, they only come on once or twice a week now. Arm pain and now neck pain are bad unless kept under control by meds.
Neurosurgery pushed me back to my PCP for med management and we both agreed to go back to the Hydros, Neuro put me on the Oxycodone 6 months before surgery. Then he went on Vaca, but he is back today, while he was out I had to go to the Chief of Staff(his boss) at the VMAC so he could my previous meds that worked, this med change is what caused my incompletes and aggravated my anxiety to the point I can barely leave my house. He has been my doc for 5 years and I trust him but I do not want him to have fill meds he isnot comfortable with so I requested a referral to a Civilian PM Clinic. I see them for my consultation tomorrow. I am allergic to the additives in most injections they have tried for my shoulder and they sent me for a full allergy work up at the Allergy Clinic to prove that I couldn't take the injections and would need medication management, Aquatic PT and I am hoping for Acupuncture to be approved also.
I thank you so much for your advice and listening to my story. I posted it on the iSpine Board also. I love the support here. Thank you for the compliments on my Pic, but guess what? I am the red head in the middle and the two girls are my 17 and 11 year old daughters. They love me so much and I them. But you are so correct, this pain is ruining my life. My partner and I are going for therapy next week. She is so supportive and my care giver but this tough on all of us. I do not want the rest of my life to be like this. I will post on the iSpine board following all the new PM appointments this week.
AJ

[Ringo]

Sister Warrior,

My pain once got so bad I almost killed myself. I use to fantacies about dying because the idea of it actually gave me peace of mind. The system at the VA is moniacal. You may find yourself going there expecting to get help only to find out you have to fight to get help and at a time when you might not have any fight left in you. That is sort of what happened to me.

They only care about your range of motion and radiculopathy (nerve damage as comfirmed by physical exam). They basicly look at your range of motion and grade your disability on that. Complaining about pain is a joke even if you think your head will fall off. Migrains are something that can be rated service connected.

Remember, any condition that resulted during service or any condition that was exacerbated from service can be service connected but that doen't mean they will give you a rating.

Also, your VSO usually has no medical back ground so they don't always know what to apply for. Some VSO orgainizations are better than others. Talk to local Vets and find out who is good.

What are you service connected for??

It wasn't untill I went to the VA asking for help (looking like death) and a social worker asked me what I had been thinking about. I told him how I was obscessing about dying and my plans to leave my family and kill myself. I was put in the psych unit for a couple weeks and I was started on meds. I hated it there at first and planned my escape but by the end, I didn't want to leave. I go to the VA every week for group and love my fellow Vets.

I just needed help with my back problems and kept getting told I was fine right up untill my 3rd back surgery, 2nd fusion. I couldn't take care of my family and had stopped working. I lost my job because I simply couldn't make my body go any more. I kept trying to get help and my mind started to snap. It is a normal process that your body goes through when under extreme stess (mental stress or physical stress). I now have severe anxiety and depression. And of all things, the VA disabled me for that. But, if it wasn't for a fellow Vet at the VA in Seattle, I wouldn't have known to apply for it. I was in bad shape. I am better but I am not the same person I used to be and I no longer have the same view of life. I felt very vulnerable and it brought out my issues of being abused as a child. I am different and I just can't seem to see life the same way any more. Thankfully, I have other Vets that understand me and don't freak out when I tell them how I feel :0 .

In any case. My heart goes out to you. I don't want you to go through what I went through with the VA. It is a totally different place than anyone could imagine. They have a hard time getting consistant good help there and lots of times the people are burned out or don't know what they are doing. I have helped a few others navigate the waters and they seemed to have benifited from it.

I will try to write more tomorrow.

Peace

[Ringo]

I am not trying to overwhelm you with personal information. Its just that stuff happens and sometimes it happens insidiously without your really knowing it. Denial is a great coping mechanism untill reality breaks through. Anyone can be broken.

The VA hospital system has some serious flaws but there are good people there that care deeply about veterans. Not all the people that signed up to go to war are the cream of the crop (so to speak). Many were people trying to escape home or other bad situations by going into the military. Serving their country was the last great frontier and would provide for better opportunity. That isn't always the case. I don't want to sound like I am the type that walks around stereo typing people.

I just have great respect for those that fought, fight or enforce the freedoms as they are given to us in the consitution. When you sign up for the military, you enter into a marriage of "untill death do we part." That doesn't mean it will happen but they have the right ask you to put your country ahead of your desire for self-preservation.

More advice regarding the VA: Get all your military medical records, keep a reasonably up to date copy of all your VA medical records and civilian medical records. Know what is in them and what they say in them. Know that by law you can contest anything that is written in them (HIPPA laws enable that and provides a procedure for doing that regardless of what the doctor says). So if the doctors notes aren't accurate, make ammendments to them. They very often chart the same stuff over and over and over again with only slight changes. Sometimes they put stuff in there that doesn't belong. If the VA sees something in there they can hang their hat on..... the wrong person can mess with you no matter how much othe evidence there is and you will spend all your time trying to fix it and in the mean time they will deny you benifits, etc. Any everything at the Veterans Administration seems to take years to decide on (no joke). I saw this happen to a Vet once. So, keep your records and know what is in them. Order them and keep a file for yourself. You will be connected with them for the rest of your life.

Your ability to work and provide for your family has been affected. It will effect your ability to enjoy life as you would have (gainfully employed), it will effect your childrens lives (if they miss the chance of getting a college education or greater.

PTSD is a diagnosis of anxiety. The VA is probably trying to walk the line with you, they do that with PTSD. You need to discuss it with a private counselor if possible, a VA counselor only if you know a good one that will act as your advocate 100%. They need to know what it is doing to your life and how it effects your ability to provide for yourself. There is a mental health score that will determine your rating with the VA. If your combined total is above a certain point, you could qualify for unemployability and you would be 100% disabiled in the eyes of the VA. Called unemployability rating. Medications and stress, pain can also contribute to insomnia and sleep apnea.

Sorry to blather on.

Best to you and yours!

Originally Posted by ajspine

Hi Terry,
Thank you for your reply and if you are also a Vet, I sincerely thank you for your service also. I have been service connected for my heart and my mental anxiety and agoraphobia(anything to not call it PTSD) for 6 years now. I have been a Vet for 10 years for the first 4 years I was too sick to fight with them and my ex husband was still active duty so I still had access to complete health care coverage. I am in contact with my VSO and meet with them again on Thursday.
I woke up one day 3 years ago this summer and could not move my neck and was so ill from a head ache I landed in the VA ER, they were of no help, just Xrays that showed I had DDD in my neck. Went and cried for another week and finally went to see my PCP, he ordered an Emergency MRI for that day. 3 herniated disks, 2 bone spurs compressing my spinal cord and nerve roots. For the exact diagnosis I would have to dig out my med records which I am later today and sending a copy to Mark.
My Dr. got me in with Neurosurgery within the week and he started me on the Hydrocodone, which worked just fine in combo with Motrin. The Neurosurgeon blew me off(he know longer works there, have no idea why) and i was sent home on pain meds, PT and ice and heat.
Another year went by and the pain grew worse, then I couldn't feel my thumb and my left arm just falls asleep for no reason. Another MRI and thing are much worse and surgery is recommended, ADR at the C5/C6 level. They said we will deal with your Neck(which they only partially did because I need another ADR and have two more herniated discs). The wait for this surgery was almost another year and rescheduled once due to Surgeon availability. During this time my headache was constant, no feeling in my left thumb and waking up 2/3 times a night with arm pain that made me vomit.
Finally, Surgery-7 months ago. Only relief is from the debilitating headaches, they only come on once or twice a week now. Arm pain and now neck pain are bad unless kept under control by meds.
Neurosurgery pushed me back to my PCP for med management and we both agreed to go back to the Hydros, Neuro put me on the Oxycodone 6 months before surgery. Then he went on Vaca, but he is back today, while he was out I had to go to the Chief of Staff(his boss) at the VMAC so he could my previous meds that worked, this med change is what caused my incompletes and aggravated my anxiety to the point I can barely leave my house. He has been my doc for 5 years and I trust him but I do not want him to have fill meds he isnot comfortable with so I requested a referral to a Civilian PM Clinic. I see them for my consultation tomorrow. I am allergic to the additives in most injections they have tried for my shoulder and they sent me for a full allergy work up at the Allergy Clinic to prove that I couldn't take the injections and would need medication management, Aquatic PT and I am hoping for Acupuncture to be approved also.
I thank you so much for your advice and listening to my story. I posted it on the iSpine Board also. I love the support here. Thank you for the compliments on my Pic, but guess what? I am the red head in the middle and the two girls are my 17 and 11 year old daughters. They love me so much and I them. But you are so correct, this pain is ruining my life. My partner and I are going for therapy next week. She is so supportive and my care giver but this tough on all of us. I do not want the rest of my life to be like this. I will post on the iSpine board following all the new PM appointments this week.
AJ