Five Back Surgeries, worse after each one

Hello everyone.  This is my first post, so I don't quite know what to do.  Having joined just yesterday, I can't tell you how much I have learned about myself just from reading others' stories.  I had no idea so many people are constantly living in so much pain all the time.

I guess the basic question I am asking is this:  after 5 back surgeries in an 8-month period, the last one being to remove infected "hardware" that had been inserted for a spinal fusion, does the pain ever really go away?

My last surgery was in November.  I am always in pain, even thougth I am taking 80 mg oxycontin daily.  I have gone to the ER and been hospitalized for 4-5 days at a time, and even intervenous dilaudid and morphine did nothing to reduce the pain!

The surgeon now tells me he has done everything he can for me, and that more surgery is not an option.  My primary physician had me seek the help of a therapist who deals with chronic pain issues.  I guess they are trying to tell me that chronic pain can be managed with attitude.  Can this really be the truth?

I am so very depressed with my situation.  I used to be able to walk miles, now can only walk a few blocks with a cane.  I still feel there is the possibility of a good life for me.

Does anyone have any advice or good words for me?

With much love for everyone out there suffering.

Ric

Dear PAlady:

Thanks so much for your kind words.  Yes, the same surgeon performed all surgeries.  Of course, one could discuss malpractice, but I guess I just don't want to go there and relive all of this:  I just want to be in a better place.  To be able to accept that my life is altered, but that there are still great times ahead.  I watched the Oscars last night with my best friend, and I had a wonderful time.  These are my good times and I need to tell myself that I must relish them.

I wish I would have done what you are doing:  refusing to have further surgeries.  In fact, my first was a microdiscectomy (sp?), and it was fabulous for the first 6 days, then I stupidly lifted a heavy mattress.  I felt a terrible tear, and then excruciating pain.  My surgeon did another MRI and said I had a collapsed disc and that surgery was imperative. 

After the surgery, I woke up with a very weak right leg, with a lot of pain, and a complete numbness in my right foot which is always present, even when I am not in pain.

After constant complaining, he did another MRI to remove the scar tissue, just as you were mentioning.  After not improving, they found that my hardware was infected, so went in and removed it.  I have been in pain pretty much all the time since then.  The oxycontin does help with the pain, but of course the side effects, particularly constipation, are really terrible.  At this point, I must be addicted to the stuff as I have been taking it for 5 months.

I DO have an excellent pain specialist, and just last Friday I had the trial implant put in (neuro stimulator?).  It seems to be helping, and I talk with him tomorrow to see if we can put it in permanently.  The trial thing is very cumbersome, but it really does seem to provide significant relief.  Do you have one?

Your instincts about not having further surgery are true and correct.  Almost everyone I have talked to who has had multiiple surgeries say that they get worse with each one.

Thank you so much for caring and taking the time to communicate with me.

Love

Ric

Ric,

First off welcome to the Chronic Pain forums, and I am both sorry and glad you found us. I am sure you can understand the mixed feelings.

Next I want to point out that as long as you are truly in pain you really can not become addicted to pain medication. You can become physically dependent on them, but not really addicted. There have been several studies done recently about this and pain meds in general and while physical dependency does go with addiction it does not work the other way around.

As far as managing pain with "attitude" it is not only possible but people do it all the time. Will it take away all of your pain? Most likely not, but it can reduce your pain and make the pain medications you are on more effective.

Wow, what a magnificent response from what I can sense is a truly caring person. I totally feel what you are talking about and your recommendations. You know, for a long time I was feeling so very sorry for myself, that I couldn't walk 2 miles with my boyfriend, that I couldn't do this and I couldn't do that.

Then I realized I either had to deal with it, learn new skills on how to regain my zest for life, or that it would be over for me. Fortunately, suicide was never an option because I love life too much.

I just told someone else in a post that I am going to have a neuro-stimulator permanently installed in a few weeks. I did the trial and it was a huge success: turned constant sharp pain into a mild tingling sensation.

What I am most happy to hear about are your thoughts about addiction. Everyone talks about how addictive Oxycontin is, but it really does help me with my pain. And no, I don't get "high" from it at all, but it certainly reduces the pain. In fact, I just saw my pain doctor today and he said exactly the same thing as you: as long as the Oxy works for the pain, don't deny myself the med and sit in pain. That just doesn't make any sense.

You seem to be managing your pain, at least your attitude, quite well. Any tricks to pass on? Or is it just a positive attitude that things can and will get better?

Love to all

Ric

Hi Ric! I too would like to throw in my welcomes! I hate to see yet another person thrown onto this CP Rollercoaster (as Stray so gently put it LOL), but it is great that you have found us here at Healing Well. I hope your stay with us is a short one and that you will be out of pain someday.

Let me first off say that yes you can and do have the ability to lower your pain with the management of attitude, but it is a full time job to keep the thoughts of good vs "Give in" and I can tell you from experience that I am struggling from this very same thing. I now have a full time job, between the happy and totally inane thoughts of "Happiness" and keeping track of all the darn medications I am on; its a struggle to keep my pain level down to a 6-7 each day.

Yes that is the lowest I have ever gotten my pain, but like you I am looking at the SCS to aide me in this fight. I have been approved by my doctor and my Pain Psychologist, but am waiting for my Ins. (Wyoming Workers Comp) to okay this procedure which my Pain Doctor says will be my last chance to ever see a life with decreased pain. I have been fighting to get the Stimulator for the past 6 years, ever since my Neurosurgeon told me that "there was noting more" he could do to decrease my pain and that I had FBS (Failed Back Syndrome), CP (Chronic Pain) and Nerve Damage from the 5 back surgeries that I had over a 5 year period. That's one a year....but not really.

I had the first fusion on levels S1-L4, two levels....back in 2000. For two years I was a happy camper as my pain was minimal and only in my low back where they had done the surgery. But after the two year mark.....fate hit me like a brick! I was now faced with another fusion as L2-L3 decided to buldge and forced me back intot he OR. Needless to say over the next year I would have another surgery 6 months out of the second fusion to revise what did not fuse on the second surgery.

Anyway.....that was many years ago and I have since looked at things with a bit more heart, I guess you could say.

Anyway......just wanted to welcome you to the crowd. Sorry my rant went on longer then I wanted it too.

Scarred

Hi Ric,

 

Do you have any plans firmed up yet on getting the SCS implanted any time soon. That is awesome that it is affording you some relief. We have some here that say the same thing. It is one of those things either it works for you or it doesn't. Thank goodness it works for you.

 

I am in total awe that you can walk a couple of blocks, and quite envious at the same time, lol. I love to walk but walking is so darn difficult for me even with a cane. There is a middle school about a half a block from my home that has a wonderful lit track. I use to walk that thing all the time in the evenings. Now, I don't think so. My problem is terrible posture, that I blame my prior PM dr for this situation. He talked me into having a pain pump put in and gave me this wonderful speech about how well it worked and what a good life I would have again. Well, that didn't pan out because he did not have the experience he needed to take care of a patient with a pump and he had even less experience in knowing about the medications used in these pumps. I ended up in worse pain and could not stand up straight from being bent over in pain. He did quit practicing PM, thank God for miracles like that. I have a wonderful PM dr now that is very experienced in all phases of pain pumps, but my posture is shot. Standing or walking for more than 15 minutes kicks the pain level right on up there and I walk mostly stooped over.  I try so, so very hard to get myself standing straight, its a real booger, lol. My dr has me experimenting a little with my BT meds to find an even keel. My hopes are to walk for pleasure again. I am even playing with the idea of trying the track again if I can get all this put together. Usingf a back brace is out, they tend to cause the back muscles weaken, well I don't need more of that,lol.

 

Please let us know when you get scheduled for the SCS. Take care and keep posting.

Ric so glad to hear you are set up for the SCS. It will be a fast two weeks for you hopefully. At least now you have something to look forward to. Timing could not be better with spring & summer right around the corner.

Now that I have a new pump dr my life is so much better than what it was. Yes, I do have meds at a constant flow. If my activity level is really low its great but once I am up doing things that is when the pain level kicks up. With BT meds I am getting some of that settled down. I have a very hard time being still, I am always in motion. I can't just sit in a chair or on a couch all day, I have to be busy with something. I can always find something to do in this house, lol, usually involves cleaning on something. Now that our weather in Tx is warm I can go outside and find a weed or two that needs pulling. This year looks like a bumper crop of those things.

Take care just wanted to check on you.

Hi Ric,

 

With me having a pump, I have what I call a cocktail of medications that is used in it. Dilaudid is my pain medication used and I also have it for my BT medication. I do remember when I was first put on Oxycontin it made me feel like that. But after a little time went by it stopped.  I am not sure how long you have been on it so perhaps this may be something happening with you. It is amazing how some medications can cause weird little things like that, but if it works then it's worth putting up with as long as it it not too distracting, lol. Vicodin and Lortab made me just nuts, bouncing off the walls.  If a dr wanted to give me pain meds first thing I would say is don't give me either of those and they would laugh, because they had patients coming in begging for it. Medications and I do not mix well at all, and it is not limited to pain meds either. My system is so wacked out that I have a hard time tolerating stuff, lol.

I think at some point I have experienced just about every negative aspect of what chronic pain and  chronic illness can do to a person. I was always an upbeat person that went 500, mph through life and enjoyed it. I always felt like I could handle just about anything thrown at me. For me, it does me no good to sit and feel sorry for myself, or even allow myself to dwell on things too long, or do the why me thing for very long.  It can be real easy to slip in that mode. I still have my pity parties from time to time but I only let them last for a day and then its time to move on. I have done it and if a person is not careful it can suck the life out of you. To me it is a mind over matter thing. Many will disagree with this but if I am feeling negative then everything will be negative around me, if I try to find something positive and grab onto it, then I am ahead of things. Even if I am doing bad I still try to find ways to distract myself from what is going on around me. Some days I am better at that than others, lol. But, I think if a person can find ways to distract themselves from any kind of negative situation it is always for the best. One of my favorite sayings is I pick and choose my battles very carefully, lol. I have already been robbed of so much from all of this and I am not going to give up anything else to it.

 

In a way every day is a battle of some sort. I do not discuss my health issues with family or friends. I do have a special friend that I can talk to and understands perhaps better than most because she has several health issues. We do lean on each other for support and that can make a big difference in someone's life. If I want to go on a rant I can and then when I am done its ok and it's on to something else, lol. I lost pretty much most of my friends a long time ago. When you say no a lot after a while many people will stop calling. I know if I am sick of hearing about it, they are too. It is not that I am in denial about things, I know all too well what I deal with. I just do not want it to be the main topic of conversation. If I want to talk about whats going on with me I come here. This is where I can come and say what I want to and I don't have to worry about anyone getting upset or worried.

 

I try to keep myself and busy as possible doing something. I have a wonderful 4 yr old grandson that is pretty much my life. He is the only one I will ever have, so I try to make the most of everything with him. It is amazing the power this little guy has over me, lol. I can be in a bad mood or even feel bad and he can turn it around just with his presence. I missed out on a lot of things with him when he was younger and feel so robbed of those things. I am bound and determined not to miss another moment. I took him on his first train ride last year, it only lasted an hour but he didn't care, he was riding a train and that was what was important to him. He loves anything to do with trains. It's the little things we can do.

 

I love being outdoors, I always have. I love messing around with flowers and plants. Working in the yard was my stress reliever when I worked. I had a high stress job so my yard always looked wonderful, lol. I go out now that it is warmer and do a little work here and there. Pacing myself is my hardest problem. It is so difficult to pace yourself when you are so use to going full steam ahead, lol. I do a lot of regrouping along the way. I can laugh at some of the goofy things I have done or tried to do and now I can ask myself what in the world was I thinking. Laughter is one of the best medicines. I know as long as I can laugh at myself I am going to be alright.

 

Take care.

 

 

Ric, you walked 8 blocks, OMG, what a an accomplishment!!!! Just don't get yourself out somewhere and then not be able to get back. Of course I am sure after your surgeries your ortho said walking was the very best form of exercise for you.  Here they tell the patients to walk to help get their strength and stamina back. But, you know you made a very valid point, you said sometimes we are our very own roadblock, that is so true.  But, it all goes back to whatever our mind set is. We often set ourselves up by thinking I can't do this or I can't do that. Sometimes we have to be creative in how we do things and that  is fine. I do feel if the attitude is"I can't", then I won't. Does that make sense? My PM dr tells her patients they can do anything they feel like doing. My PM dr says one of the goals of pain mgt is to have a person up being mobile, not laying in a bed or sitting in a chair all day. She says that is as damaging as the condition.

 

Fortunately, no I have never been bothered with constipation like so many are from the pain meds. With the crohns disease, I have the opposite problem and my gastro had hoped the pain meds might slow it down but it didn't. Careful with the mag citrate, not only will it dehydrate you, but it is also  hard on the kidneys. Have you tried any of the daily stool softners which are not harsh like a laxative. Miralax is one I know many use. There is another one I have seen many here use too and its name is totally slipping my mind. You might do a quick search on here for constipation and see what you find, I know it has been discussed many times.

 

I have my bad days like anyone else and it just gripes me to no end when it happens. I lost so much time out of life because of a PM dr not taking care of me correctly, and I just don't want to lose anymore. Once that time is gone you cannot regain it back.

 

I had the little wild one today and he is just so full of surprises. On the days I get to pick him up from school his teacher brings him up to the office to wait on me so that I don't have to walk to the back of the bldg where his class room is located. He entertains the ladies in the office with some of his antics and usually has them laughing.

 

I hope you have a great weekend and a low pain one as well. Just remember one thing about pain, never let your pain get out of control, you want to stay on top of it and not under it. Once we hit that point of no return  with pain, it is so difficult bringing the levels back down.

Hi, Ric,
Oh, the big "C"! LOL Most of us on narcotics deal with that, although mine doesn't seem too bad anymore. When I first came home from surgery it was a major problem!

I can't remember the stool softener I used to take, and the community nurses had me use sepositories when it got really bad. But I did find that prunes help a lot. I overdid it one night, though, because I really like those little suckers and sat and ate them like candy while watching tv. Needless to say I did not sleep the entire night - they worked too well! So now if I use them I take a half a dozen on a napkin and put the rest away!

We have discussed it on older threads, but I'm not sure the title of the thread was the actual word. Yes, you just click on the "new topic" icon and it starts a new thread. It's a common problem, so you'll probably get a lot of ideas!

I'm glad you're taking your meds in a more balanced way and not fighting taking them. When the pain gets really out of hand, like you experienced it actually ends up taking more medication to get it under control. So it's good to learn your body's signals for when it's starting, and do what works for you to help keep it managed, be it medications and/or a combination of heat, a TENS unit, meditation, whatever. Most of us need a pretty big tool kit!

PaLady

Ric,
I have never, ever been called "ultra-fab" and that's just way too cool! Thank you!

BTW I have no idea how many prunes you should eat; I found out my limit the hard way! I think half a container may be too many, though (that's what I had on that infamous night!). LOL

I've been following your thread and straydog always has great advice. She is right on about sometimes we set the limits on ourselves. I'm still working on that. Sometimes I know that I let fear make the decisions for me. Maybe it's all trial and error, and we have to learn what's worth doing, and how much of a price we pay for a given activity - and then make decisions accordingly. Some things aren't worth paying a price for, but others are. And of course many of us tend to overdo it (straydog is good at that & I don't think she'd mind me saying so! LOL). One day at a time - that's it exactly!

Today my pain's been so-so. I think it's the change in the barometric pressure, and the damp, rainy weather. I am learning weather affects me more than I ever realized, and I know I'm not alone. Thanks for asking!

You'll have to let us know how the prunes work!

Have a great evening!

PaLady
p.s. You know I always think of Ricky Riccardo when I see your name. Ricky & Lucy. Course not everyone will know who I'm talking about, but I bet you will!

Dear PaLady:

After only 30 minutes, the prunes are WORKING!!! Oh my God, why didn't I think about this sooner. And they are SO delicious. Sorry if others are having to read about bowels and other such unpleasantry. But for anyone out there suffering, they really do work.

Guess I shouldn't have eaten 12 though.

Love to all and have a wonderful Saturday and Sunday

Ricky Riccardo

Dear PaLady:

Well, it is now 4 a.m., and yes I have been on the "throne" for quite a while now. But oh my God, what incredible relief, and from just 12 little pieces of fruit! If anyone out there is suffering from constipation as a result of medication, this is something that really works, and the fabulous thing is that it is natural, not a chemical and not harsh on your bodily organs. Thank you SO much, PaLady, I now dub you not only ultra-fab, but super, ultra-faboooooo!!! Now that probably tells you that I might, in fact, be a gay male. A gay male in San Francisco, does that seem real??????? Seriously though, I guess I need to check my profile to see if I incorrectly listed myself as female. Although gay, I most definitely identify as a male, and most of my friends are straight females.

So glad that you appreciate my wonderful, most favorite city in the world. I have lived in Venezia, Amsterdam, Munich, New York City, but the gem of them all is my beloved San Francisco. Of all those cities mentioned, it is probably the most fun to walk in and just explore all the different ethnic neighborhoods. That is what I truly miss from now being disabled in the manner I am. But you know, I can still get around with a cane, and we have a magnificent public transport system here, so when I am not feeling well, I just get on a cable car or a trolley and go around the town, watching all the people go on with their lives and enjoying all this city has to offer. So sad to hear you couldn't carve out an existence here, because it truly is a magical, magnificent place to live. I have lived here since 1971, and was able to buy a tiny, magnificent little place when things cost $40,000. A little birds nest with a view of the entire city and the Bay and Ocean in the distance. You know, I am truly blessed, and it is interesting that I am sharing this with you on this Forum. Being able to share with a fun person like you, and knowing that even though pain is a very reall part of my life, there is still much to rejoice about. I can tell from the tone of your posts that you enjoy life as well.

So now I am off, at 4:30 a.m., to watch an episode of Lucy. I think I will watch Lucy's Italian Movie. Do you like that one? I love the little shots of Rome, and her fighting with the real Italian lady is just so fun.

Tell you what. I will be your Ricky if you will be my Lucy. So nice to have a new friend.

Write soon

Love

Ricky Riccardo