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  • My PM Prognosis......Not Good

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    Old 07-23-2008, 07:41 PM   #1
    Lou1
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    My PM Prognosis......Not Good

    Hello Everyone,

    I know I have not posted all that much on this forums but I do read every post on a daily basis and I fell like I have gotten to "know" quite a few of the regulars on this board, even if I haven't shared all that much about myself. I did post a couple times when I was going through some very hard times with a medication switch where I had terrible side effects, etc and received some very good advice from several of you.

    As a very quick update of my situation for those not familiar, in Feb 2005, I had a triple fusion of the cervical spine (C4-7). While structurally, the surgery seemed a success, I did not receive a bit of pain relief and, in fact, over the 3 years since the surgery, the pain has now spread to include the entire length of my spine. Recent MRI's show severe degenerative disease and my neurosurgeon mentioned that my MRI looked like that of an 85 yr old man (I am 45).

    My current PM regimen has me on LA morphine sulfate 30 mg 3x daily with IR morphine sulfate 15mg up to 2 x daily allowed for breakthrough...this regimen provides minimal relief. I also take 40 mg of Lexapro daily for the depression that has overwhelmed me in recent months.

    I received some information from my doctor today that has sent me reeling and I do not know what to do. He told me that he would like to raise me to either methadone or the fentanyl patch. He said that, even if I did go up to either of these narcotics of last choice....that I would gain a year at most of mobility before I will have to quit working!!! This completely through me off the deep end. At 45, I am doing fairly well as a store manager of a department store, making a pretty decent salary. And now out of nowhere, the doctor is telling me that my entire career is doomed and that I have a year at best before I will no longer be able to stand for any length of time as is required for such a position.

    I knew I could feel my condition gradually worsening. Things that I could do just 6 months ago are now at times very difficult. For example...getting out of bed. Some mornings, I absolutely cannot get up out of the ged due to the pain. I have to have my partner lift me up. Once standing, I am able to "work out" the kinks and hobble around the house. That is just one example. And now I have had it in no uncertain terms dumped in my lap on a platter that I will for all intents and purposes be disabled and unable to work within a year.
    This completely terrifies me....in a financial manner and what sort of quality of life am I facing at such a relatively young age?

    I am at a complete loss and would really like to hear from some others who may have a bit more experience dealing with disabilty issues.

    Thanks in advance,
    Lou

     
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    Old 07-23-2008, 08:31 PM   #2
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    Re: My PM Prognosis......Not Good

    Hi Lou, sorry to hear that you are facing tough times. You are at the point now that I was in about two years ago. I am now nearly 53. I had a very physically demanding job as the director of maintenance at a lovely private school. I walked about 6 miles per shift, in addition to doing many physical tasks with ladders, lifts, and all kinds of construction equipment. I loved my job and worked there for nearly 12 years.
    I had a terrible fall from a ladder about 10 years ago that smashed my lumbar spine. Then had 3 epidurals, then a laminectomy. Recovered very well and had 6 1/2 good years after the surgery. Started to have more and more lower back pain, along with numbness and pain in left foot, then leg. Then started having nerve pain in right leg. Started on the healthcare merry-go-round, including neurologist and 2 surgical consults after MRIs.
    I was in increasing pain, sometimes having to crawl or lay down right where I was when the pain overtook me. I started on a search to figure out what was wrong with me, as I really wasn't getting answers from docs. My back structurally didn't look too terrible on MRIs. My search led me here, where I saw a post from Moldova that she had been dxed with arachnoiditis. I started to search this out, as she had symptoms just like mine.Long story short-my second surgeon found arachnoiditis in my spinal cord after I kind of led him to see it.
    It was not the dx I wanted to hear, but at least I knew what I was facing. There is no cure for this malady, and the only treatment is palliative care. I'm giving you all this background to show you that we are very much in the same boat. I'm super blessed in that I have LTD insurance. Not the amount that I was making, but I won't be homeless either. Also have a great wife, who is very supportive and we are making it work. There is life after disability, though it takes some getting used to. I'm quite a bit older than you, so I have just settled in my mind that I have taken early retirement. I'm also blessed in that there are still things that I can do for exercise, though everything has to be done moderately, or I pay in pain afterward.
    There are actually good things that have come from this. My wife and I are actually closer and though it's a cliche that people take time to smell the roses, I am forced to do so.
    The first thing you will need is a supportive doc, either a PM doc or a PCP who will make you as comfortable and treat you for the long-term. My PCP is a wonderful man who is not afraid to write scripts for opiates and has helped me to develop an effective cocktail of meds to treat both the back pain and the nerve pain and symptoms. For a guy who can only stand or walk for about 5 minutes, life is still good. I hope and will pray for the best for you as you face your new reality. I have found this forum to be especially helpful and I'm sure you have, too. Please keep posting and if you have any questions, there are some super-intelligent, experienced, and helpful folks in here.

     
    Old 07-23-2008, 10:27 PM   #3
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    Re: My PM Prognosis......Not Good

    Quote:
    Originally Posted by Lou1 View Post
    I am at a complete loss and would really like to hear from some others who may have a bit more experience dealing with disabilty issues.
    I would be glad to help anyway I can. Sorry to hear about your issue. I had a very fruitful career with a fortune 5 company and it all came to a sudden stop. However, looking back, I feel blessed for having the coverage that I had / now have. However, it wasn't easy and I wish I had someone to guide me, but I didn't....I navigated through everything in the dark....Partly because I had absolutely zero experience with CP and disability, but also because insurance companies want you in the dark...More about that later when the appropriate discussion arises.

    Quote:
    At 45, I am doing fairly well as a store manager of a department store, making a pretty decent salary.
    Yes, you probably are. However, look @ the alternative if you stay too long....Your company will eventually catch on, and be proactive in eliminating the LT "risk" and "cost." They will cover their tracks via downsizing, or re-structure of some type and you'll be on you own....Without a job, a salary, or benefits.....And because of your situation, more than likely, not employable. So, my advice would be to follow your Doc's recommendation and do what you have to do to secure your own future, and those around you. Your Doc probably knows all of this as he's seen it many times over, and just hasn't spelled it out for you like I have. Trust me on this....If your company finds out about your ailing health, you will be @ risk......For a number of reasons. I think it may come down to what the culture is like in your organization and what type of company you work for....In my case, it was a very large, aggressive, company that didn't like speed bumps, so I had to get out or risk being re-organized out. Your job may be different. But, like Stymie (below), I felt so fortunate for my coverage.

    Quote:
    Originally Posted by stymie82 View Post
    I'm super blessed in that I have LTD insurance. Not the amount that I was making, but I won't be homeless either. Also have a great wife, who is very supportive and we are making it work. There is life after disability, though it takes some getting used to.
    Same with me....I had a LTD via work and also applied for SS disability. My spouse was / is super supportive and I agree that it takes some getting used to, but in reality, once the "stress" of your job is taken off your plate, you can focus on your health and doing those things that bring the most joy into your life. CP is bad enough without having to struggle through the demands of career. I miss a lot about my career, but there's a lot I don't miss also. I think that's one of the reasons I participate so much on this board....I like mentoring and helping others....I had to find new says to channel my mind and mental energy....Even though my physical energy is minimal.

    Let me know where I can help. I'd be glad to walk you through the entire process, if needed....It can be quite cumbersome. Although you are young, you are also old enough to where finding comparable work will be difficult if you should be laid off / downsized. Thus, you have to protect yourself, as hard as that may be to think of right now. Please trust me on this.

    Re: your pain, both Methadone and the patch are great meds. I've never taken Methadone, but have the patch....I'm a big supporter. I recently had to stop using it in the spring due to the heat....i switched to Avinza. It seems to work well, but not as well as the patch. The main issue I see with the patch is that it's a patch...you've got to put the darn thing on....It can be itchy, and if you have any active lifestyle whatsoever, you sweat and as a result, the patch doesn't do that great. My plan going forward is to cycle on and off it....Patch in late fall to very early Spring, and Avinza from early spring to late fall.

    I've heard great things about Methadone....Steve is a big supporter of it, so hopefully, he'll join in here @ some point. The only drawback I have heard is that if you ever want to stop and take something else, there will be some WD.....Methadone occupies receptors that no other drugs do, and as a result, a med taken immediately thereafter won't lessen any type of transition. Conversely, when you take Methadone after something else (including Heroin), your body just flips the switch and you don't get WD....Methadone occupies all the receptors these other meds do, so your body doesn't miss the other drug. However, because it also occupies some receptors by itself, there lies the issue (when you try to stop using it). I've explained this in very layman terms, but if Steve joins this discussion, he'll probably give you more scientific jargon.

    Take care, and hope you feel better.

    Ex

    Last edited by Executor; 07-24-2008 at 08:40 AM.

     
    Old 07-23-2008, 10:59 PM   #4
    Shoreline
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    Re: My PM Prognosis......Not Good

    Hey Lou, Regardless of the relationship you have with this doc, All he is doing is giving you his opoinion. You can prove hime right or you can prove hime wrong.

    I don't understand why you would need to change meds simply beause your not getting adaquate relief. You called meth and fent stronger drugs, but that's only on a mg to mg comparison. What's preventing you from increasing your dose of LA morphine? They make a 200 mg version of MScontin that works quite well for failed fusions. The only reason to change from such a small dose of morphine would be some kind of extreme or intolerable side effect you can't manage. If the only reason your changing is because the doc believes more morphine won't work without even trying, It makes HIS prognosis more of a guess with no basis.

    How does he know you will respond better, worse or have less side effects with another med or that you can't increase your present med without intolerable side efects without having tried? How does he know you will only get a years worth of relief and that's it?

    I've had 3 failed back surgeries over the last 15 years, The last a 6 level revision that left me bed wriden and That fusiion failed and this set of hardware is slowly breaking and bending piece by piece. Total failure of hardware and fusion and I'm some how improving. It's not because my doc or I believe I'll be in a wheel chair a year from now with no hope of managing the pain. The more I excercise, the more I'm able to do and the better my prognosis looks. A rod may snap and pop through the skin, But it wouldn't be much of a life spent flat on my back waiting for it to happen.

    Since starting LA meds 8 years ago I've gone from being bed wridden 95% of the day to being stable on the same dose of opiates for several years. Then an implanted pump which allowed me to excercise and rebuild the toll being bed wridden and sedentary had taken on my body. After 9 months of 2 a days at the age of 42 I'm back to work part time. I say part time beause I can't do 9 hour days 2 days in a row but I can do it every other day. I have to conform to the disabllity regulations in order to work and find a balance between work level, feeling good about working and managing the pain. If your doc saw the doses I take he wouldn't give me a month to live.

    I just spent a week in Cancun and had the greatest time of my life. Yes my life has changed , I am on SSD, I did loose my home, or had to sell it because it took 2 years to win my SSD case, But I'm glad I didn't check out when times were bad and I wasn't able to imagine the life I have now. How we deal with those changes is up to us, not a doc or some prognosis pulled out of thin air or some darker place. I don't mean to minimalize your condition, but given the info you have stated, how in the heck can he make that kind of prediction. Was their a top hat, crystal ball or magic wand involved? It honestly sounds like he isn't comfortable prescribing more than a 100 mgs of morphine a day?

    I may not be able to work full time on my feet the way I used to, but I don't believe the rest of my life is just going to be one big downward spiral as more and more hardware breaks and my spine continues to shift. Personally I believe I can strengthen my core which will prevent this and So far I've been able too exceeed every prognosis and learn to accept what can't be changed.

    I do believe that if someone believes something to be true, they can certainly make it happen. Either by excepting it as truth or by taking ownership of such a pesamistic outlook. The only way I see this comeing true is if your doc tries one dose of fentanyl and it doesn't work so he switches to methadone and adjusts it once and then refuses to adjust any further even if your not experiencing negative side effects.

    Some docs have limits on what their comfotable prescribing, just like some docs wouldn't prescribe you or me a single vicodin. Is it your decision to give up on morphine because the side effects are overwelming and the drug is hindering more than helping, or is your doc simply not comfortable prescribing a stronger dose. You could suport that weak crap with the idea of opiate rotation, but 30 mgs aint squat if your toelrating it well and the only problem is pain relief. The weakest version of LA morphine is 15 mg, your only on the next step up and a very long way from a 200 mg dose which isn't the max dose either.

    I didn't even begin to get relief from 200 mgs of LA morphine a day, 300 mgs was no better, but at 400 I finally started noticing some relief. At 600mgs a day, 200 mgs TID I get about 50% relief which is about the best I can hope for given the instability of my spine. No doc can say you will be a cripple in 12 months or you will be cured in 12 months. Medecine is trial and error, When you reach this docs comfort limit as far as what he is willing to try, it doesn't mean there isn't any more hope or someone else with a better understanding of opiates wouldn't be willing to increase rather than change at such a low dose. The only max dose is the one a patient can't tolerate or that hinders you more than it helps.

    When or if this happens get a different opinion when you resach this one docs comfort level. Honestly I think i would be more prone to believe that prognosis from a fortune teller than I would some doc that obviously hasn't seen the benefit from what he may consider high dose opiate use. At 300 mgs I really didn't care if it took 600 or 1600 mgs, It simply becomes a number during the titration phase. The only thing that mattered was relief and side efects. Nobody knows how much it will take to manage your pain 5 years from now or even a year from now. Nobody but you knows how much you can tolerate as far as pain and side efects to make that kind of prediction.

    Untill you reach a ceiling yourself and can say If I increase the dose i will have to wear a catheter or will have to surrender my driver licence because I can't stay awake. Untill you know from triall and error an increase would cause more problems than solve, there is no reason to believe this guys is doing anything more than pulling a number out of the air because he's already uncomfortable with your dose, as little as it is.

    The prognsosis I see is this doc saying increasing won't help once you reach his comfort level. Then you simply get another opinion and when you tell another doc you never tried anything greater than 30 mgs of morphine TID they might just be willing to give it another try at a different dose. Do you care if it's 30 or 300 as long as you don't feel impaired and the side efects aren't an issue?

    If the only reason your changing meds is because your not getting the relief you used too, The correct definition for this occurance is tolerance, not apocolypse. I understand the stress and worry and depression, but I don't understand doctor doom and glooms' prognosis. Is telling you his opinion going to help you in any way, or is he just giving you signals that he isn't comfortable with high dose patients?

    There is always another opinion out there. I don't believe every PM doc is going to see 30 mgs of morphine TID as a point where meds must be changed, rotated or given up on.

    Don't give one docs opinion that much power over your future. There are other docs with different opinions that could be far more agressive.
    Good luck, Dave

    Last edited by Shoreline; 07-24-2008 at 05:03 AM.

     
    Old 07-24-2008, 05:33 AM   #5
    tiggertoo2174
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    Re: My PM Prognosis......Not Good

    Hi Lou,

    I think Shoreline said most of it, but here goes with my 2 cents. Never say Never. Earlier this year I was in such bad shape that my husband asked me if I wanted to take early retirement. This was shortly before I fired my PM doc and went back to my PCP for help finding another. My PCP changed my meds from Ultram and Baclofen to Oxycodone (very small dose) and Flexeril. The new PM doc then sent me back to Physical Therapy. Before the changes I had a very difficult time even walking into the grocery store, now that is really easy, and I am doing some things I never thought I'd be able to do
    again. Using the computer mouse with your right hand doesn't sound like a big deal, but I hadn't been able to do it for 2 1/2 years. Now I can do it!

    Basically what I want to say is don't give up! Get a second opinion, get a third if necessary. You may have to modify the way you do some things, there may be some things you just can't do, but don't give up until you've explored all the options.

    Tigg.

     
    Old 07-24-2008, 05:53 AM   #6
    butrfligirl28
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    Re: My PM Prognosis......Not Good

    I agree not to let this docs opinion get you down. Howmany times have you heard, "the doctors said I had only six months to live, and that was 5 years ago." No one knows exactly how quickly your DDD will prevent you from working. I think that he may be trying ti prepare you for this possibility, but it's just that, a possibility. Our bodies are amazing structures, and can surprise us all. I would highly suggest making necessary preparations if this time frame is correct, but do not let it dictate your life.

    I know it's hard to hear these things, even if no one is really sure. I am sending you big ((((((HUGS)))))! It's going to be okay either way. You are a strong person, and you will get through whatever this throws your way. You are in my thoughts and prayers!

    Your Friend,

    Amanda

     
    Old 07-24-2008, 10:19 AM   #7
    Lou1
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    Re: My PM Prognosis......Not Good

    Thank you to all those who responded and gave their advise. Shore....I might have mislead partially in my original post. My PM doctor just started me on the morphine...starting at 30 mg 3 x a day. I see him again next tuesday for assessment on how the meds are doing and will most likely be titrated upwards, in an effort to gain more pain relief.

    The doctor I saw yesterday who gave me this sort of "doom and gloom" scenario of a future is the pain psychiatrist that I also see weekly to help me cope with the emotional aspects of dealingwith severe chronic pain. He and my regular PM doctor converse back and forth regularly regarding plans for my future care and med needs. It is the pain psychiatrist who told me that it looks as though I will have to be on either fentanyl or methadone before very long to get any sort of relief (since I have already tried Oxycontin and Opana with terrible results). And, based on the MRI imaging and the fairly rapid reduction in mobility and ability I have in completing physical tasks that were simple as recently as a month ago were the basis for making that statement about likely needing to quit my job where I am on my feet at least 10 hours a day, sometimes having to lift heavy store fixturing during store resets etc.
    Unfortunately, I only have STD at my job which covers you for 90 days. At open enrollment anually, I have the option to opt in on a LTD program. I just NEVER imagined I wouold ever face something that would have me out of work longer than 3 months!!! Open enrollment comes around again in November. I do not believe there is any sort of preexisting limitation to enrolling in the program (fingers crossed). It pays 60% of your normal salary indefinitely.

    I have been an emotional mess the past 24 hours, worrying myself sick. My greatest fear is the financial impact. I make the majority of our household income. If I lose my job, we would stand to lose everything, including our home. I don't even know how to begin facing that monster.

    Lou

     
    Old 07-24-2008, 10:26 AM   #8
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    Re: My PM Prognosis......Not Good

    Just do what you can for your future but always remember to put your health first everything else is material and can be replaced in my opinion. The stress of worrying is not good for your health. I know easier said then done.

    Last edited by ms_west; 07-24-2008 at 10:27 AM.

     
    Old 07-24-2008, 04:08 PM   #9
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    Re: My PM Prognosis......Not Good

    Lou,

    I know how you feel. I am also still out of work after 3 months and have been being harrassed at work due to my continued problems. They actually called me to tell me that my FMLA had run out, and that my job was no longer protected! Geez....thanks for the update. I work for the state, yet we do not have STD, or LTD. I have worried endlessly about the $$$. We just bought our first home 6 months ago, and cannot do it on one salary. Just remember that if you are fired, you can at least get unemployment for a while. It is only about 60% of your income, but it may keep you afloat.

    I hope neither one of our positions comes to that, but it will work itself out. It has been hard for me to hear, "your health comes first." But when you really think about it, nothing is more true. None of this is your fault. You did not ask for these health problems, and despite all the meds, all the doctors, ect. there truly is only so much we can do about it. Take joy in what you CAN do, and let the rest go if you can.

    Believe me, this is me trying to practice what I preach, but it may be all we can do right now. The rest is in someone elses hands. God Bless you and your family. I pray that things will look up very soon.

    Your Friend,

    Amanda

     
    Old 07-24-2008, 10:16 PM   #10
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    Re: My PM Prognosis......Not Good

    Quote:
    Originally Posted by Lou1 View Post
    Unfortunately, I only have STD at my job which covers you for 90 days. At open enrollment anually, I have the option to opt in on a LTD program. I just NEVER imagined I wouold ever face something that would have me out of work longer than 3 months!!! Open enrollment comes around again in November. I do not believe there is any sort of preexisting limitation to enrolling in the program (fingers crossed). It pays 60% of your normal salary indefinitely.
    I would definitely enroll....If it's after tax income in which you pay the premium, the benefit (60%) is tax free. If you pay the premiums with pre-tax money, then it's taxable. Most of the LTD policies are tax free. Mine is. You can also apply for SSD, which comes with Medicare.

    Quote:
    I have been an emotional mess the past 24 hours, worrying myself sick. My greatest fear is the financial impact. I make the majority of our household income. If I lose my job, we would stand to lose everything, including our home. I don't even know how to begin facing that monster.
    Don't worry....You have open enrollment coming up, so you'll be fine. And, like some others have said, you may not need it. You'll cross that bridge when you get to it. But, I go ahead and get LTD....It's usually very affordable and something everyone should have....Regardless of their condition. The best thing going for you is that it seems that you have a very supportive Doc....Something many don't have. A good Doc is KEY when applying for any disability. Plus, it seems that this Doc is good one overall....Again, something many don't have. You have a lot to be thankful for. Lastly...Many are here to help, if needed, which will be a big asset.

    Let me know where I can help.

    Regards,

    Ex

    Lou[/QUOTE]

    Last edited by Executor; 07-24-2008 at 10:18 PM.

     
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