Hello All,
This is the first week I have posted on this site, or any site for that matter. I first posted under back pain because that is my major problem, but I thought I would check out Pain Management because this is a topic I could use more info on.
I have three herniated discs in my lower back with lumbar lordosis. I also have two degenerating discs in my upper back with the beginnings of arthritis that started from a fracture in that area.
The upper back injury occured 12 years ago. The lower back injury happened 5 years ago. I had surgery on the L3-L4, L4-L5, and L5-S1 herniation three years ago. I do the PT exercises religiously, but the pain is always there, sometimes with a vengence.
My Ortho is in charge of my PM mainly because my injury is a Workers Comp case.
Pre surgery I was taking Neurontin, Relafen, Topomax daily with Percocet as needed for breakthrough pain. One year after the surgery something went wrong and my pain levels went through the roof. I also have trouble walking, sitting, standing and sleeping.
I have always been very cautious about the narcotics I have to take. After the pain became worse than pre surgery my doc convinced me to finally tru oxycontin. The relief I received was a god send.
It took me a long time to come to terms with the fact that my pain was chronic and would always be with me. It is just at a diminished level with the oxycontin.
One of my problems now is that Workers Comp is settling my case. There are good and bad points with this. I can finally look for a doctor that will at least do diagnostic testing and find out what happened after the surgery to make the pain levels increase so dramatically. But I will also have to find someone who deals with pain management who is not going to automatically take me off all my meds.
I have never liked the idea of putting so many chemicals into my system but I really cannot imagine how bad my pain will be without them!
Can anyone give me some advice on how to look for someone in pain management in my area? Do all Neurologists or Ortho's handle PM or should I look for someone who specializes in it?
With Workers Comp you pretty much just go to the Docs they tell you to or they won't pay but now that I will have to foot the bill myself I have some say in the matter.
Also you can look for other questions of mine under back pain. It is really nice to find this site. I have no one I can talk to about what is and has happened to me. It gets really hard when you feel like there is no one who understands just how much chronic pain can affect your life and outlook. Right now the only one's I can talk to are my cats but they have problems of their own.(LOL)
Hey Bill, LOL
Before you settle, consider what these meds cost. I had to switch to methadone as it's the only afordable drug fo rthose iwthout insurance hat don't qiaualify for patient assitnce programs. Finding a doc may be the easy part, paying 1400 a month for one script may become the hard part. That's what my dose of Kadian would havce costed and Oxy is more expensive than Kadian.
Your medical beni's have the most value, The last yar I had prescription insurance which was just Jan throgh august, My script insurance paid out over 23K for the meds I was on. No I use the cheapest meds, do without meds that I can't aford and hope medicare pays for what they put in my pump. They pay for the Morphine but I'm presently trying o get the baclofen covered which will cost me 750 a month at the lowest possible dosage. Preservative free intrathecal meds are extremely expensive.
As far as finding answers, You can do that before you settle and it will help your case. Pay for your own IME, Independnet medical eval. GO to the best med school in your area dn be evaluated by their NS or ortho dept and you wll get all the answers that comp has withheld. They told me I would never need surgery again after surgery number 1, wrong, the next surgery cost about 45 K and the following over 100k, then coinsider the costs of these meds if thsis is a problem you have to with for the rest of your life. It will be thebest 300-400 bucks you ever spent and you will likely find the answers to all yorur questions. Comp docs are a bit biased because they lose their comp contracts if their return t work rate isn't high enough. Every comp PM program I went through, everyone graduated and evryone was returned to work. Imagine suc an amazing program that has a 100% success rate, just what comp is loking for. Although it sounds statistically impossible, they still returned each and every patient to full duty. That gave comp the levrage to cut off monthly payments if tyhe patient refused or was not able. Frcing people into crappy settlements that cold never even begin to cover the road that lays ahead for CP patients or patients that may need surgery and have been denied the chance for a cure due to cost for years.
No amount of money could evr compensate me for te life I ave lost , the cost of meds and living with intractable disabling pain. A comp settlement didn't prevent me from ahaving o sell my houe after taking out a second, didn't prevent me from going BK 5 years later when I had 40 K in medical bills, it certainly hasn't helped my marriage, so money is not the answer to chronic pain, proper dignosis and tretment is the naswer and that's what they want out of. because that's whhere their biggest liability is. What's your monthly med expense if you had to pay cash. Ideally you will get lifetime medical benis and with an outside IMEfroma respected head of an DEPT at a medical school is hard evidence there is a problem that needs to be fixed. The only DX comp docs gave me after the initial surgery was muscle starin when I had instability, bulging and impinging discs and alot more problems than I ever imagined.
Then the the surgerries to corect hese problems failed, one after the other and I've been disabled since the age of 33. A million bucks wouldn't change my life. My house my be prettier, my chair a bit more comfy, but my life is what it is, and money won't give me my old hopes and dreams back or sense of contribution to society. Somethings you can't put a price tag on.
I settled because I was so sick of being stuck in their system where they had complete control over my life. They had returned me to work and I could barely walk and it was muscle strain?, I thought getting out of the stress and all the BS comp stuff would somehow ease some of what I was dealing with.
Yes it is nice going to the doc where he has your interest at heart rather than the interest of the insurancecompany overriding every decidion he would make, but you really can't put a dollar value on being disabled. , but you can on what projected future medical expenses will be and you need an outside medical oponion that carries weight to overcome their BS docs.
Good luck, Dave
Thank You So Much for taking the time to talk to me.
I was injured at the ripe old age of 37. One day I went to work and before first break my entire life had changed dramatically. I went from earning a decent living to trying to raise my 2 kids on Welfare. It really bites when you have to tell your kids that Christmas will come in January when mom's school loan checks come in.
After my surgery I realized that I would never be able to do the kind of work I had done before. Workers Comp is supposed to retrain you so you can go back to work. Unfortunately I do not live in that Utopian society.(LOL) Since they were not going to help I decided to help myself and went back to school to finish a degree that I had started years ago.
Some days the pain is so bad that I cannot make the 40minute walk from my parking area to my classes but my current doc says I am not elegible for a sticker (handicap) to park closer.
I cannot work, most days I go to 2 classes for 1hour each. Then I have to come home and hit the ice and bed for a few hours.
My soon to be ex husband does not comprehend just how bad all this can be. He keeps telling me the surgery was supposed to 'fix' me and he does not want to hear how I hurt. He accuses me of using my disability as a 'crutch' even though my doc has told him that this is the best I will ever be.
My meds alone cost 2700 a month. The back doc runs 110 and the psychologist I cannot afford anymore runs175a week. I am settling because I am jusst plain tired of fighting. People look at me and just because I do not "look" disabled they assume I am faking. That is the worst part. Even my husband, who was supposed to be my support system.
The college I attend has a medical school that is known for its cutting edge research. I think I will try your advice about contacting them.
More than anything I just wanted to thank you for writing me back. Most days I feel like I am screaming into a vacuum. Like no one hears or understands that when all you have to look forward to everyday is waking up in pain, spending the day in pain, and going to bed in pain, life can become....Well...A real pain!(LOL)
"We laugh so we do not have time to cry."
Hey Bill, obviously not a bill, but it went well with Sheakspear and my dyslexia would make a mess out of that word. LOL
They did do a lot of psych counseling, more like group counseling and inforamtion at the workamans comp boot camp I had to attend. You take what's useful and forget the rest.
But hey did explain about the expectations of others. In this modern day where there is a pill for everything from PMS to a child with a behavior problem, people expect fast and instant results. We have surgery in hopes for a cure. Our spouses hope the surgery will fix us too and are usually suportive in the recovery phase. However when we don't recover, the way we were expected too, and everyone has their expectations, from the surgeon, to the doc that referred you to surgery, to our spouses and family and friends. It's like we have somehow disapointed them by surgery failing to fix whatever problem we were desperate enough to have surgery for in the first place.
Obviously we don't have control over every aspect of our recovery. IF you did your best and busted your hiney in PT, followed every direction and did the stretches,, excercise and walking, etc. etc etc. what more could you have done to feel guilty about?
I know the whole I'm sorry syndrome. We are sorry we got injured, sorry we had surgery, sorry the surgery didn't work, sorry about the financial problems, sorry intimate relations aren't the same, pretty soon we start apologizing when it rains or when the water wasn't hot enough when it comes out of the spicket.
It's good you have a psych to talk to and it is neccesarry when everyone else is judgeing you based on your recovery, how you apear on the outside, which is a natural instinct to hide our injuries and put on a happy face for our friends and family. Put on a smile, stand as staright as poosible as we have some meaningless conversation in which just standing makes you look for a place to lay down. The friend we encounter feels better after leaving because we look so well and things must not be that bad, what they don't see is that simply standing in the store for 20 minutes put us down for the rest of the day.
As far as not quilifying for handicapped parking, that's BS too. If the comp doc were to fill out that form he would be admitting that you have a problem which throws a wrench into their entire denie denie denie, stradegy.
Get the IME, It's not independent if Comp sends you to it. I've seen that too many times. If comp is paying, it will have an outcome on the DX and the way your treated. The entire eval is tainted by the position of the payer believing you are probably over stating or exagerating your symptoms. So it's very important to get outside of the loop of docs your presently stuck in.
Comp won't pay for an outside IME, But their docs will have a dfficult time disputing something when your bring flms back, MRI's CT and Xrays with Red pen circles all over you problem area and a DX for each circled Item or parrt of your body.
When confroted with a true expert, most of these comp docs will agree and not dispute the docs findings, If the case needs to go to court, which takes a great financial support to survive, being cut off, the damage it does to your family and the willingness of people to help that we have somehow let down by not making a full recovery makes it more difficult. The can certainly out wait you when your trying to survive after they cut off weekly payments.
They think they have been let down??? Sheesh, Unfrortanately many relationships can't stand the strain and many patients can't stand it either. As bad as things may be now, you always have to keep in mind that medical knowledge is constantly growing and changing. A procedure or aproach to surgery from 5 or 10 years ago may have fallen completely out of the standard of care. Unfortunately we are the ones that don't have a choice, the other people in our lives still have choices. If our lives are too depressing for them to deal with, they have a choice, they can leave. Where we get to continue to play alone with the crapy hand we were dealt.
Counseling can help, It probably saved my marriage but you really never know how safe things are.
I don't mean to bring up painful topics, but aside from the meds we take or our DX, we all have a lot on common in more ways than one. If you have ever apologized for your spouse having a bad day at work, you are in the club. Like we have some control over the day he had but somehow whatever goes wrong becomes our fault. I know it's a psych problem on our part to stop feeling responsable for everthig that goes wrong, but when you have lived that life for years it kinda hard to suddenly let all the guilt and anger and mourning of our losses go.
First I wanted to way WELCOME!! Though I do not have back trouble, mine is adhesion related disease(nasty), in the pelvic area, you did ring a note that is so true for many of us CP people and that is if they can't "see" it we must be fine. This is the part that s#@#@. I wish I could show them the pictures of my insides... they would barf. It is hard for them to comprehend that another day of pain is not worth it sometimes. Unless you have lived it, I guess it is hard, since before all of this I NEVER thought it could be THAT bad! Well, I was wrong...it is and then some. Please hang in there and again welcome!! Oh, and I've been there with the ex-husband thing and it's tough but it does get better...it really does. Take care of YOU!!! Love, Surgical Disaster
Newbie needs info on PM 
Though I do not have back trouble, mine is adhesion related disease(nasty), in the pelvic area, you did ring a note that is so true for many of us CP people and that is if they can't "see" it we must be fine. This is the part that s#@#@. I wish I could show them the pictures of my insides... they would barf. It is hard for them to comprehend that another day of pain is not worth it sometimes. Unless you have lived it, I guess it is hard, since before all of this I NEVER thought it could be THAT bad! Well, I was wrong...it is and then some. Please hang in there and again welcome!! Oh, and I've been there with the ex-husband thing and it's tough but it does get better...it really does. Take care of YOU!!! Love, Surgical Disaster
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