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Newbie, my story, my questions, my support

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Old 08-18-2006, 09:34 AM   #1
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Post Newbie, my story, my questions, my support

First off, let me say that I've read many of your stories, and I sincerely hope and pray that everyone who deals with severe, chronic pain finds the best solution. I want to share my story and then my here it goes:

In July of 2002, I was in a bizarre and serious car accident. That itself is a long and quite crazy story in itself, but basically, the accident left me with severe lower back pain, along with neck pain, and I ended up on a flat board going to the ER. That solved nothing. I had an MRI later and went to see a Neurosurgeon.

I had no idea what to expect, but I was finding that my back pain was increasing almost daily, and about 4 weeks later, I got to see the surgeon...bottom three discs were degenerating, buldging, herniated...the works. He said I had severe degenerative disc disease...something everyone gets at some point in life to varying degrees...and that my problem had probably been jumpstarted by the trauma of the accident.

While he admitted that some surgeons would see this as an opportunity for a fusion, we agreed that surgery should be the last ever option, as outcomes can be very unpredictable, and that conservative treatments should be tried and exhausted as potential solutions before even thinking about surgery.

OK, so I set out to do P.T. I did this for a solid 6 months, but only made it with constant cortisone injections. Next, I tried epidural steroids at the referred pain clinic. No relief. This was a clinic with the mindset that medicines were bad, treatments were good, and any use of narcotics would ultimately lead to my demise, addiction, etc. I was paranoid of medication and therefore went on to the next procedure, which was the freezing of the facet joints. Nothing but more side effects. I then spent six months on a natural medicine kick and dealt with a chiropractor, therapist, etc. All the while, by back pain got worse, my career started to suffer, I became depressed, and my marriage took a backseat to my own pain problems, which I largely kept to myself. In addition, I ended up in a monumental legal battle with my insurance company, then had to sue the people who ran over me, got screwed by a shrewd set of lawyers...but I digress, that is another very long story.

After 2.5 years of trying everything I could short of surgery, I returned to my original nuerosurgeon to ask him what I should do. He ordered another MRI, and told me that the severe DDD had really accelerated. After a lot of deliberation, we both agreed that I had tried many of the alternatives to a fusion with no success, and that he would consult with another surgeon on doing a multi-level fusion. Meanwhile, he ordered a mylegram and we tentatively planned for surgery in October of 2004. When I went to the hospital for the procedure, I was in severe pain, and while I was being prepped, they found that I was running a fever. I was experiencing a mild bout with Crohn's, but to me, it was nothing. The doctor came in and told me that he was canceling the procedure as I appeared to be in distress or ill, and he rudely refused to answer any questions and left. I was crushed, but it turned out to be a blessing.

Later that same day, a distinct, severe pain seemed to just "pop" in my lower back. Now, I had been in pain for well over two years, but this was new territory for me. My left leg hurt so bad I was in tears, as did my back. Tingling sensations were strong in both legs, and I could not walk at all. No pain medicine I had even touched this type of pain, yet I waited until after midnight to go to the ER. The nearest one is an hour away, and I had to get my wife to drive me along with waking our young daughter. For whatever reason, the ER was packed, and I remember laying on the floor in tears for nearly 4 hours. When I finally was seen, the ER doctor said I had a ruptured disc, and ordered an MRI for it. My surgeon arrived around midday the next day and confirmed that I had a "massive" rupture that required emergency surgery. Said he would try to clear his schedule and get to me later that day or the next. The next morning, the doctor told me that I had a rare blood disorder called a factor 5 deficiency, which meant I was prone to bleeding & slow to clot. How I made it to 35 years of age with countless scopes and one other surgery without knowing this seems strange to me...but regardless, the Hematologist went to work to find the right mix of fresh frozen plasma to give me before I had my "emergency surgery". 14 days later I was cleared, and by that point I was physically and mentally numb.

After the surgery, I really felt terrible. The surgeon came in and declared a victory, saying they had removed 95% of the disc fragments and fluid. I told him I really felt terrible, but he immediately went to my left leg and began to examine...and I admit, the excruciating left leg pain had subsided, which is the only thing he said was likely before surgery.

Three months go by, and my personal life and career had to be rebuilt. I hit P.T. very hard, and was initially optimistic. Then, in February of 2005, I had what seemed to be another rupture, just before I was to return to work. I raced back to the surgeon, who ordered an MRI. He told me that I had not had another rupture, but that there were a lot of "problems" from the first surgery, and that unfortunately, they had to go back in ASAP. This whole period was very depressing, and I never got a very good explanation IMO for going back to another surgery. Scar tissue had apparently wrapped itself around the sciatic nerve, pinning a disc fragment left over from the first rupture against the nerve. The disc above L-5, S1 was not ruptured, but according to the doctor, had all but disappeared, and he showed me how that disc, and others, had absolutely no return on the current MRI...the result of very rapid DDD. This all seemed just unreal to me, but I had less than a day to think about it, and back to surgery I went. This time, I definitely came out worse, but I was now getting very worried about work, and I held back on saying too much.

The surgeon told me that they freed the nerve from external pressures, but that was likely temporary. He also said I had a very rapid degeneration in progress, and that he would never operate on me again, officially diagnosing me with a "failed back". Keeping in mind that I had to work, I really didn't go to the trouble to find out just exactly what that meant, and after he referred me to a different pain clinic that did prescribe medication, I again went through extensive PT and even returned to work in June of 2005.

From June 2005 until Feb 2006 I tried my best to work. I was probably in complete denial about what was happening to me, and my wife was relieved to see that everything was getting "back to normal". All the while, I was having to take more or different medicines, I was using vacation days right and left in lieu of sick time, and I was slowly fading in every aspect of my life. In March of this year, I cracked, and took short-term disability and returned to my surgeon. He told me that this was inevitable, unfortunately, and that he would order a functional capacities exam. My company jumped all over this idea, and it seemed that everyone was pushing me down the path of long-term disability. I explained all of this to my family and my wife cracked. Keep in mind that I was doing very well at work and we had become used to a nice six figure income and lifestyle, and that would be coming to an abrupt end.

By chance, I read about the pump from Medtronics, as I already have an insulin pump from them and had heard of pain pumps before. I realize this story is already way too to wrap up, after 5 months and some 15 appointments, tests, physcological exams, fights with insurance, etc., I finally just got an intrathecal pain pump. I'm amazed by the effectiveness of this device...some 50% relief in pain already and I actually wake up in the morning quickly and relatively pain-free. I had always dreaded the first part of the day, as waking up = severe pain and stiffness, followed by drowsiness and depression after taking pain meds. I am now off all meds in just 10 days, and I've felt better this week than I have in over 4 years. There is much, much more to the story, but the general picture is painted here.

Now for some questions, although I have to take a break from this writing...

- I still have that burning desire to go back to work. Anyone work full-time in a mid or high level management job with the pain pump?

- While I feel better, should I wake up and face the truth about work? If I had to take LTD now, I could lose my wife, but in reality, the compensation would allow for a normal life after selling the house and cars that are way out of our I delaying the inevitable with severe DDD?

- Anyone else have an initial "high" or thrill after getting the pump, only to have it fade out in effectiveness? I'm a little worried about this, as the past 2days have not been so good, for the first time since the surgery two weeks ago...thoughts?

- Anyone have the pump and still have to take meds? How much?

- Anyone have any side effects from the pump? Had to have it removed? Typical dosages? Dangerous dosages?

- Any diabetics with the pump? If so, did that cause more issues?

Again, sorry for such a long message. I shouldn't keep all this to myself but for now don't really have anyone to talk to at this level of detail and specifics. Any advice, answers, comments, etc., would be very appreciated. Thanks in advance for even reading all this!

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Old 08-18-2006, 11:41 AM   #2
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duttin HB Userduttin HB User
Re: Newbie, my story, my questions, my support

I have had 2 failed back surgeries,now have steel rods supporting me.Also severe DDD.I know the pain you have went through.I'm glad the pump is providing releif for you.I am not familiar with the pump so I can't advice you on that.I had nerves severed as a last resort to alleviate some of my pain.the nerves were trapped by titatnium spacers that couldn't be removed.
Try to work as long as you can,I know its hard some days,but it will keep your mind occupied and off your pain level.

Old 08-18-2006, 01:45 PM   #3
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Shoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB UserShoreline HB User
Re: Newbie, my story, my questions, my support

Hi Hope4U, I'm not up to covering 13 years of history, but I worked up until the last time they tried to revise my fusion.This was to replace broken hardware and redo a fusion that faioled to grow at L3-4-5. I woke up 12 hours later fused from L1-S1 and that failed to grow too. Since then screws have toggled out of holes, screw heads have sheared off, I've developed a significant slip at L5?S1 "spondyliotheisis" where the vertebrae shift out of alignment and could potentially topple off. I crunch and squeek when I walk and wpretty much did all the stuff you talked about, PM clinics, injections, coping skills, etc.

I had a pump implanted 2 years ago and the biggest change is the mental clearity from going from oral pain meds to intrathecal delivery.

As far as side effects, of course there are side effects, but they are usually dose dependant. If your not having side effects now it won't mean you won't have side effects as they increase the dose down the road. That's pretty much inevitable when the problem isn't stable. Meaning it's pretty much a given that your spine is going to continue to fall apart. What works now may not when the next disc goes. As far as never having surgery again you can never say never. There are less invasive ways to remove disc fragments than lengthening you old fusion. With rapid degeneration, I wouldn't expect to be getting the same relief a year from now without an increase in dosage.

Doses can be increased and meds can be changed but eventually you will reach a level of side effects you won't be able to tolerate or that leave you impaired. Side effects of IT meds are pretty much the same as side effects seen from high dose oral use with long acting meds. Constipation, Urinary retention "can't pee" hormonal changes like low testosterone, ED, sedation, restless leg syndrome, etc. etc. But that's when you reach whatever your threshold is and whatever you consider intolerable.

I really didn't catch that your pain had been aggressively managed with oral meds prior to the pump, meaning long acting meds like OxyContin, MSContin, Duragesic or methadone. If you went from basically minimal pain meds to a pump, I would think what your experiencing is somewhat of a honeymoon. 50% pain reduction is the goal of pumps but 50% means different things to different people. Just like rating pain, what's a 5 to me, may be an 8 to you and a 3 to someone else.

Personally I have had to reset my pain scale with each surgery , when the unimaginable becomes your reality, you need to come up with something new to call a 10. Which is supposed to be the worst pain you can imagine. Once you experience more pain than you can imagine you need to drop that down to a 9 and use 10 for something worse than what you know now. Trust me, things can get worse. 50% reduction in pain may mean someone can go back to work, or it may mean someone doesn't need help walking or standing in the shower. 50% relief means I'm not bed ridden and can take care of the house. It takes me 4 times longer to get anything done but itís important I contribute something. If 50% relief means you can resume golfing or your fun activities, then the decision is purely financial.

Only you know if your able to work. I was mid level management not that it matters because I can't go 4 hours without soaking my clothes in sweat and having to lay down. I can't sit in a booth selling cigs for 8 hours or travel the eastern seaboard training people.

It cost us our house, fortunately we were able to sell and walk away with the remaining equity after paying off the second it took to make it through the 2 year process of social security determination. It cost us our credit, had to go BK, and we live a very different lifestyle in a very different neighborhood. Our daughter just turned 13 and there are times when sheís the glue that keeps us together. I wasn't happy with my new role as House B#%# and this wasn't the ride my wife had signed up for either.

It's tough on wives and relationships. Fortunately my wife is dealing with things but she was working when I was inured so it's not like my housewife suddenly had to get a job. I imagine if that's the case it would create even more tension. Not being able to work or losing your identity is little tougher to deal with then retiring early. I'm 40 and would love to work, I miss the interaction, the mental stimuli, I miss everything I can no longer do, But I'm supposed to be grateful I can still walk although that's limited.

Having little to talk about other than the housework you accomplished that day also leaves a bit to be desired. It's awkward and uncomfortable going to a Christmas party or family reunion when you can put on a happy face for an hour or two because nobody knows what my life is really like. They can't see 12 screws , 8 rods, failed fusions and a pump that allows me to fake it for a few hours. On a good day I get about 50% relief, I still use short acting oxycodone when the pump isnít cutting it. If you set the pump to manage your worst pain, you would be over medicated the rest of the time. I also have my pump set to deliver a higher rate at night and the am.

I'm at the point where side effects are limiting increasing the dose. I could switch meds again and hope for less side effects and better relief, but given my prognosis, any great relief would be short lived.

I assume your talking about private LTD benefits offered by your company or purchased through a private plan. Those plan benefits usually decrease over time rather than stay the same, so in addition to the LTD you would likely apply for social security disability unless you were a fed, state or postal employee which have their own plans that are better than what's offered in the private sector or SSD.

SDD has a max benefit and someone making 300Kk doesn't get more than someone that made 50K.

If you do have to apply for SSD, you have to do it within a certain time frame or you won't have worked recently enough to have the work credits to be eligible . Credits are worked quarters. IN 99 you must have worked 5 out of the last 10 years, normally the 5 preceding your disability. If you have great benefits through a private plan, you should still apply for SSD before 5 years passes. Not that going out on LTD has any effect on your eligibility for SSD.

SSD is very different than private LTD. It doesn't matter if you were a top level exec making 300k a year, Disabled means unable to perform any type of job. If you can sit in a booth selling cigs at a gas station, you can work and wouldn't qualify for SSD.

There really is no average dose, as far as high doses, compared to who and what. Which med are you talking about. Morphine, Dilaudid, fentanyl or Sufentanyl. I'm at 6 mgs of dilaudid a day and increasing my dose would mean more side effects and impairment than I'm willing to live with and more than I want my wife and daughter to see.

It sounds like going out will end your marriage, That's a decision only you can make. If you're close enough to retirement, maybe losing your identity isn't as big an issue as it is at 40. If you could travel and enjoy yourself, it's a different set of circumstances. There is no dose that will get my life back. I think you will be surprised how fast you loose strength and endurance if you have to live a sedentary life to keep the pain manageable.

Anyway, I'm bouncing around now too thinking about my life. If I forgot something please ask or someone else may catch it for you. IMO IF your employer will allow you to come back to work and you are physically able too, I would fight to stay working untill things get worse. I don't know what 50% relief means to you. I was already disabled when I had the pump implanted and although I knew it was just a tool, I guess I hoped in the back of my mind it would make a big enough difference to return to work. The biggestl improvement is the clarity of mind from not using high doses of oral opiates.

Welcome and good luck, Dave

Old 08-18-2006, 03:24 PM   #4
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Re: Newbie, my story, my questions, my support

Shoreline, thanks for all the details. I originally wrote a much longer, detailed note, only to find out I was over double the maximum allowed 10 K characters. Even after editing, I realize it's still way too long for most people. You did answer some questions for me.

I'm 38, and this all started just over 4 years ago. Years of prednisone back in the 80's and early 90's, which was the default treatment for the disease at the time, along with the trauma of the car accident, basically destroyed my back per the experts. Before this happened, I was a very active Fly fisherman, Tennis player, Hiker, Camper, and Auto Enthusiast. My career was also on the fast track, and I have a 7-year old daughter.

Other than still trying to raise my daughter, all activities have ceased. I'm not even able to be a very good househusband. My wife and I met at my first job with AT&T. She took an early out to start a family and has stayed at home until just recently. She's working now, but suffice to say that all of this has really taken a toll on her, and simply put, this is not what she signed up for when we got married 10 years ago.

Because I stayed in denial for so long, we will be in trouble financially if I can't work. Avoiding bankruptcy and a credit crash depends on how fast we can sell the house, cars, and scale back to match our earnings...disability plus maybe $30K. To me, money doesn't matter one bit anymore. To her, it's devastating. I've begged for counseling, budgeting, and communication, but I've also resigned myself to the fact that I can't make someone change. It's ironic, though, that I went to great lengths to explain Crohnís disease to her when we met 14 years ago, and even had several hospitalizations due to flare-ups before we got married. It's a messy disease that at times can be devastating, but I've always been blessed with remissions. I figured that if she could handle that then she'd be an understanding spouse if my health ever started to go...but as bad as Crohn's can be, the multiple failed surgeries, failed back, and chronic, severe pain is just so much worse for me, anyway.

As for medicine, I was on 4 80 mg Oxycontin a day, with Dilaudid & Oxycodone PRN. It was A LOT of medicine too me, and only now do I realize just how much it screwed me up mentally. I started on long-acting meds two years ago, going on the highest dose at the end as a last ditch effort to save my job.

My biggest problem is definitely at night and in the A.M. If I wake up, I hurt too bad to go back to sleep without meds. If I take meds, it's too hard to wake up. This ultimately led to my most recent medical leave that started in March. I do have a company LTD plan, and it's integrated with SS and has a cap of $50K/year. Again, it's hard to ask for sympathy if I actually made something close to that between SS and the company...I know I could manage. It just requires a big change in thinking for the future, lifestyle, etc., and that's what could end up destroying my family. I truly hope that's not what happens, but right now it seems inevitable.

Fast forward to the pump, which I got two weeks ago. Just to be mentally clear, as you state, had me so excited right after surgery. Initially, just lying around and waiting to heal certainly kept my pain level down, too. I've seen the doctor every three days or so, and we've upped the dose to 5 mg/day of Dilaudid, and I've hit a wall today. It does make me sleepy. I also need modest amounts of Oxycodone for breakthrough pain. When I see him Monday, I plan to tell him that we've maxed out for now. 50% pain relief for me means that I've gone from a 7.5 to around 5, trying to be as accurate as possible. As I get more active, I realize that's probably optimistic. Returning to work would be much different as well.

My biggest concern at work is that while on the one hand they have been extremely patient with me for 4 years now, I know that I've used up all the good-will left for me. My LTD is calculated off of my base salary, which is about 50% of my total compensation. If I go back to work and take a lesser job, which is likely, I'd be screwing myself if disability is inevitable. In other words, I know things will only get worse from here. I realize I will be an LTD candidate in a matter of years or maybe even months. By trying to work, I will at least know I gave it one last shot, but I will only reduce my company LTD from here on out. I've already been in complete denial about my future fate for 4 years...especially the last two years. I literally worked my own schedule before my 5th and most recent medical leave, in a job that typically requires 6A to 6P running a 1500 person operation. Looking back, I'm surprised I was allowed to get away with that for nearly 10 months. I did have good days where I'd gut it out and accomplish a lot, but what a roller coaster. In addition to the official, many month official medical leaves, I never actually made it through an entire week.

As for doing something else, I'm of the opinion personally that this problem does not discriminate. Sometimes I'm in tears just trying to get out of bed. I'd go crazy not working, but my efforts would have to change to keeping a house or apartment up and my daughter. I don't want a divorce, but if I'm completely honest, I'm resigned to the fact that I have not proven to anyone I can actually work, and my whole push to keep trying is probably centered around trying to keep my family together.

I know this is another long note, yet still not enough information for others to be able to tell me what to do...perhaps you could still weigh in, though, with your opinion, even if you need more info...just fire away. And thanks to all for listening.

Old 08-18-2006, 09:33 PM   #5
Join Date: Aug 2006
Posts: 6
Rintention HB User
Re: Newbie, my story, my questions, my support

How does this all work? This is my first post. I just kind of "jumped in". I can relate to some of the concerns you are dealing with. In fact, I can relate much more than I care to. My illness is different than yours, but it introduces many of the same concerns-disability, a continued drive to work-a passion to work-almost. I, too, feel the guilt of trapping my spouse into a marriage that he didn't "sign-up" for. I, also, had been completely honest about my health problems, never dreaming that my health would get even worse! As I said-I can relate to many of the concerns you detailed.

God bless you.

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