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Back Pain post surgery...deperate for words of wisdom!!!!!
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QueenBean8 posted:
Quick history, pain in my back and leg started after I had my 2nd child AND a few months later I had a nasty fall. I tried injections, medications, chiropractor and then in December I had a Diskectomy procedure. Started to get a bit better and snowballed into pain to the point I am unable to work. I have seen a few dr's that told me I have scar tissue pressing on my Sciatic. I have severe pain in my back and right let. I have tried nerve blockers, anti-inflamatories...etc. On 60mg of Oxycontin 2x a day but it doesn't help...thus I am awake at 4am! Is 60mg a lot? I do not know much about pain medications, although I have been on them a while.

Dr.'s have all told me to try this, go to this specialist, chiropractors, physical therapy and in the end nothing has helped at all. It is starting to get me depressed. My pain management Dr has asked me if I would try acupuncture. I am not sure I want to be a guinea pig for yet another type of treatment. Anyone have an opinion about this they can share? Facts? How long it would take if it works? Money is a huge issue because I filed for disability but they continue to reject me. The pain has led to depression and feelings of worthlessness. I have a 2yr old and 7yr old and a husband. I am 37yrs old and cannot even think about feeling this way for the rest of my life. My family and friends do not understand why I cannot "push through" the pain, which I feel I do EVERY DAY!!!! It is frustrating. I could really use some facts and opinions and anything else you could say to help me with issues of family, what to say to them, how to deal with pain and treatments...thank you!
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Trudy292 responded:
As far as the 60mg of oxycontin - no one can really say if that is a lot or not. It really depends on how long you have been on opiates and your tolerance to them and how your pain responds to them. I am personally on 80mgs of oxycontin twice per day and the ER doctor I saw last told me that is a lot of opiates.

If the oxycontin does help your pain for several hours and then you run out of pain relief in between your doses, some doctors have been known to prescribe this medication at 8 hour doses instead of 12. I will be asking my doc about this the next appointment that I have, but I only see my PM doc every 3 months and sometimes every 6 months depending on my last medication change.

As far as family goes, I really try not to vocalize my complaints about pain to them. They all know there are things I cannot do. I have problems with low blood pressure, syncope (passing out with no warning), chronic pain, kidney disease, major depressive disorder, etc... It just kind of goes on and on. My immediate family - husband and kids know of all my limitations and help out nearly all the time. My extended family - brother, sister and parents do not really understand my limitations and I do have to end up reminding them that I cannot do certain things or I just avoid being at certain events that I know will just be too much for me.

I have never done acupuncture. I did chiropractic care back in 2005 and 2006. I have done physical and occupational therapy as well as epidural shots and cortisone shots. At first the chiro care did help. The therapy also helped with learning how to walk and keeping me on track to try and do daily tasks, but it did not help the pain at all.

I was originally approved for disability in 2004 based on my diagnosis of Leukemia because it was considered a terminal disease at the time. I had a bone marrow transplant at the end of 2004 and was then cancer free from 2005 on. In 2007 they reviewed my case and denied my benefits. I had to go through another review in 2009 because I had filed to continue my benefits and go through an interview with a DDS worker. I did that and handed her 225 pages of medical documents and she made her decision the very next day and denied my benefits yet again. The next step was in front of an Administrative Law Judge and by this time I had gotten a lawyer and had 3 of my doctors stating that I was in fact disabled and could not work. My PM doc was the most important to the judge and he filled out a several page questionaire for me that had 20 questions or so that asked about my ability to perform tasks and how long I could sit, stand, walk, lift certain weights, etc... He also went a step further and included 25 more pages of documentation of my visits and testing results that supported his and my claim of being disabled. In April, I went in front of the ALJ and won my case. So hopefully I won't have to do this again for awhile. I would suggest you make sure your doctors are on the same page with you being totally disabled and then get a lawyer to help with your case.

Good luck!
Trudy
 
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Peter Abaci, MD responded:
QueenBean,

Wow! In two short paragraphs, you have done an incredible job of describing not only some of the experiences and emotions that you are going through, but I think you have painted a picture that many many others would relate to, as well. You have touched on a number of important issues including questions of where your sciatica symptoms are coming from, how much Oxycontin to take, where do alternative treatments like acupuncture fit in, to things like how to communicate with family, and concerns about depression and self-esteem.

What you have described is how a chronic pain problem can grow to impact so much of a person's life. These issues are complex but interrelated to each other, so it would be difficult to expect a medication, like Oxycontin, or one modality, like acupuncture, to adequately address all that you are going through. I think it would be helpful if you could work with a provider or a special center that could coordinate a comprehensive plan for you that incorporates treatments to work with your physical issues surrounding this problem in conjunction with the emotional challenges, which might include things like working with a pain psychologist or signing up for a Mindful-Based Stress Reduction course.

I think you would find treatments like acupuncture to be more beneficial if it becomes part of a plan more focused on your total well-being.

As for the Oxycontin, as suggested by others, people vary in how much of this they can tolerate and how quickly they metabolize it.

Improving communication and understanding at home sounds like a priority, as well. At my center, our psychologists and MFTs usually help our patients and family members with this when it is a problem, and it often is. I also have a chapter devoted to this important topic in my book "Take Charge of Your Chronic Pain."
 
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cweinbl responded:

I've had four (4) spine surgeries, including two discectomies and two laminectomies, plus multilevel fusion. They ALL FAILED. I'm in worse pain now because fo the surgical damage and fibrosis.

The success rate for spine surgery is about 60% (see: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf ). Had I know it was 60% when I started, I would never have allowed the procedures.

I had to retire from a wonderful university career at age 51. Today, at age 58, I am forced to be horizontal virtually all of the time. Even with the most powerful pain medications, I'm in constant pain. I've been through two comprehensive pain management programs. Only biofeedback helped.

Patients must conduct their own research and go into surgery understanding the morbidity and risks. Shame on surgeons who tell their patients that they success rate is "80% or higher." They don't have to live with chronic sever pain for the rest of their lives.

Find a compassionate physician, preferably a family doctor or internist, who will prescribe the most powerful pain medications. It won't bring your life back. But it will make it barely tolerable.
.
cweinbl csw2@bex.net
 
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tinneas replied to cweinbl's response:
I too had to cut my work life short at the age of 47. I have also had 4 surgeries with 3 different prostheses in my spine. I suffer from neuropathic pain but had to have the surgeries I had. I was in excruciating pain beforehand. Still have pain now but it is different. I have a fantastic pain consultant and am on a lot of medication. I have been told that I will have pain for the rest of my life but believe that if I had not been operated on I would be dead by now.

I sympathise a lot with you but no surgeon will operate just for the fun of it and will only do so as a last resort. I have been on a pain management course and found it so helpful. First time I laughed in several years and I made some great friends. we only have two choices give up or fight and Im not giving up without a fight.

I have also been on a trial for a spinal cord stimulator but it did not work which was a big disappointment at the time but it was not for me.

I have a great physiotherapist who has got me through so much and has never given up on me. I have to go to him regularly and he helps me so much I would not be able to survive without him. He has devised a gentle exercise programme for me and it helps a lot.

I hope sincerely that you will be able to get some sympathic people to help you as I have. Prior to my surgeries I had gone through the mill with different specialists telling me it was all in my head when I had a broken back I had lost a lot of respect for the medical profession but then I met the most wonderful surgeon where everything was explained to me and I was allowed to ask any questions I wanted to and this makes such a difference,

Hang in there and dont give up. I nearly lost all hope. I do hope that you will get some relief from your pain soon.
 
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annette030 replied to tinneas's response:
I am sorry, but some surgeons are not in it for the patient's best interest. My husband needed a hip replacement, we already knew that when we saw the xray that showed the femoral head totally collapsed from AVN. I am an RN. The problem was that he also had a chronic Staph infection in a wound on his opposite leg, the wound was open and dressed with gauze of course. The surgeon said he would schedule surgery for two weeks from then, no comment when I asked him about the Staph infection, he never looked at it, never laid a hand on my husband except to shake his hand. Did no examination of any kind.

When he sent his report to the primary doc, he claimed to have done all kinds of measurements, etc. We were charged for a complete first time exam, several hundred dollars. If the insurance company had not paid for it, we would have complained. My husband just wanted out of there. We never went back. We went to another orthopedic surgeon who agreed to do the surgery only when the wound was completely healed for three months, a second surgeon said the same thing. He had successful hip replacement surgery three years ago, several months after the wound finally healed. He had to have vascular surgery before it finally healed. Thank God, no infections of any kind since.

The orthopedic surgeon that my husband first saw was just in it for the money. However, with decent screening there are lots of fine doctors out there to choose from. I have had the same doctor for over 15 years now, you just must screen them carefully. But, use your own head too.

Take care, Annette
 
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QueenBean8 replied to tinneas's response:
do have days that i do not know how i will live like this for the rest of my life...at 37 yrs young it is hard for people to understand that the pain is much lgr than the small incision on my back...my family included. since i hv been on cymbalta i have found i can be more positive and fight this btr mentally but not being apprvd for disability yet has caused financial prblems so it is just one more thing o deal with. thanks for the words of encouragement.
 
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playtimeI responded:
The problem with some people is they have never experienced real pain let alone cronic pain. They have no idea the harm they do by basically telling you its all in your head when they say to push through your pain. I have many spinal issues sense an auto accident 32 years ago and I have tried everything. My last spinal surgery about did me in instead of taking 7-9 hours my surgery lasted close to 13. One complication after another but I had so much damage done from the accident I should have been killed. I sustained a fractured neck along with having to have all disk in my neck and t-7 fused. Enough about me. I had great results with acupunture the first 4 sessions but at the end of the 4th I became really sick. I had an alergic reaction that lasted roughly 2 days. Its not that common for someone to have the type of reaction that I did but sometimes it happens and because of this I was not able to have anymore. Give it a try you have nothing to lose and the pain of the needles is nothing if your doctor knows what he or she is doing. As for your medication I just don't understand a doctors reasoning in giving you what I concider such a large dose only twice a day as in 24 hours the way I understand it. I didn't like Oxicodon so I asked to be put on Roxicodone "Oxicodone" they are the same. My pain management doctor has me on 5mg - 1-2 every 4 - 6 hours but I am able to keep the dose down to 3-4 pills every 24 hours. So if I took the max dose it would equal your twice a day 20 mg's but sense my dosage is spread out I don't run dry so to speak because there are no high or lows from my dosage "if I make sense". I also have an infustion pump that delievers diluadid & 2 other medications also. An infusion pump delievers the medication directly to ones spinal canal by way of a cathetor. I can't spell worth beans anymore. If you do not understand how one works I suggest doing a search in infusion pumps for pain medication. I am on my 3rd pump over the past 14 years. I can understand you being depressed as pain eats at one emotionally and depression can actually cause more pain. One feeds off the other and if someone is down emotionally they will also have less happy feelings to help one with pain. I am having a very hard day so my consonstration level is very low today and I am depressed from my pain level being so high as of late. I don't have and have not had any support from my wife sense I was injured she just feels like your relatives "well the pain can't be all that bad just push through it pain never killed anyone". But once she gets her head starts to hurt she wants sympaty from me. I have lost all of my friends in the past 32 years except one and this is because he understands what pain is himself having to deal with it himself. May I suggest a support group these seem to help some but I grew tired of the one I was in after hearing someone complain about their baby toe to many times. I never discounted anyone elses pain untill I heard that one. Everyones pain is real to them and untill the baby toe incident I never concidered my pain worse than anyone elses. My own family has and is very supportive but my wifes family has not been. I think it depends on how they were raised growing up also. I sure hope you are seeing a theripist or doctor for your depression because they both go hand and hand. You need to be able to talk or tell someone that will not judge you or your pain the way your family and friends are doing. Try the acupunture you have nothing to lose except a couple of sessions that may just help you. I started to have pain relief on my second session. Its hard to discribe the feeling but its not like taking a pain pill its just different. I wish you all the best and keep that chin up and try not to let family members or friends get you down. Talk to your doctor about giving you smaller doses but having them timed closer together.
 
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jpinmiss responded:
brrn there for going on 12 years. Sounds like you need to final
an orthropedic surgeon and hopefully find a good onr.
To correctly be diganosed you have to have a mylogram and MRI on your spine, I take 4 10mg perocet, four 50mg tramadol, four flexiril daily, plus and two
restoril at bedtime. Some days are good and i don't take my percocet , but other days i may need six to make the day.

Might want to at acupuncture. Hang in there, you are by yourself,

jpinmiss
 
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QueenBean8 replied to playtimeI's response:
Your response really helped me...I just want you to know that. It made me feel less crazy, I hate to say it...but there is something about comfort in numbers...however I hate the fact there are others who have to suffer with chronic pain like me. Wouldn't wish it on anyone, well that is not quite true, there are people in the world who deserve it, but you know what I mean! I tried the acupuncture, but it did not work. I had two sessions and had to stop because I got MERSA, the infection there is not real antibiotics for!!! It ocurred at one of the puncture sites in my head but it was not from the needle. I actually think I have had it for a long time I just didn't know what it was...I had some sores/infections under control myself. Then I got a bad sore that wouldn't drain in my head and had to see an infectious disease specialist who told me all of the bug bites that wouldn't heal or scarred really bad was probably caused by MERSA...it is gone now but my Dr told me if I had no relief after 2 visits it wasn't worth continuing and he did not want to take any more chances spreaking MERSA...I have not had any reoccurance in a month now. I probably picked it up in the hospital when I had my disectomy, stress and the surgery probably lowered my immunity to such things. I mean really, what else can possibly happen. I broke my toe walking down steps 2mos ago, my leg gave out...these little things, should be little, but sometimes I have the "Whoas Me" attitude and I used to be such a positive person...my pain is back trifold, I have to go back to the dr this week to let him know. I usually wait a week after my pain increases to make sure it wasn't just something I did or a way I slept. It usually takes a week after something like this for it to calm down to what is "normal" for me...it has not gone away.

Why am I telling you this? You come across as understanding, not just to my pain, but to the way people can be about pain. You are very good at verbalizing thoughts into written words. I can not really talk to anyone about that. I haven't thought about a support group. It would be cool to do that via e-mail or message board, not sure I could sit and listen to others...I would be afraid I would be in a group with someone like the little toe person! My luck I would be!
 
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Jlawton1314 responded:
I have have L4/L5 disc removed back 2010, I still have back chronic back pain. I have tried physio, laser, chiro,with no success and now I am trying acupuncture. I am three weeks into my treatments and I feel an improvement. When I get up from sitting or laying I am all twisted and one hip it higher than the other, very painful. With the acupuncture I am experiencing less pain when I get up and my hips feel to be more level. My acupuncturist feels that she will be able to make 100% improvement on my back pain, I would even settle 50%. I am willing to try anything (not meds) that will help improve my quality of life.
 
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An_246134 replied to playtimeI's response:
I've got to ask how you and the others are doing after almost a year?! I have many health issues with the spine being the worst. I can relate completely to what has been said. Hope to hear from all of you.
 
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chronic1008 replied to QueenBean8's response:
I have had 8 back surgeries and 2 head surgeries. I fell at work in 2005 and herniated 2 discs. I had 2 previous back surgeries prior to 2005. During a fusion surgery in 2006 I lost my hearing in my right ear. My hearing was replaced with extreme Tinnitus. The Tinnitus is 24/7 and gets so loud at times it is difficult for me to hear out of my good ear. I have spent over 5 years out of my last 7 either in bed or on the couch. I was taking over 24 pills a day for several years. I was taking 180 mg Oxyconttin, 8 mg Dilaudid, 60 mg Cymbalta, Lunesta, Lyrica.....I was so inactive that my Vitamin D level was non existent, Testosterone was gone and in Aug 2010 I was having chest pains. I went to the emergency room and found out my heart enzymes were elevated so high they immediately admitted me and hooked me p to machines to prevent a heart attack. I had my 7th spinal surgery in Sept 2011. Within one month after surgery I had lost over 50 pounds because I was finally able to start walking. I did not drive for 4 years due to the medication I was taking. I got my driving privileges back in Nov 2011. Although I continue to have a lot of pain every day I try to manage it the best I can. I always keep a cooler and ice pack with me. Ice seems to help my low back more than anything. I continue to do light stretching and I try to exercise in a pool as often as possible. The buoyancy of the water really feels good. I have had a spinal stimulator in my spine since Jan 2010 with some good results. The biggest problem is going to sleep at night. I need to turn my stimulator down to sleep and this increases my right leg pain. I am 45 years young with 4 children (3 of which are under 10). My best advice is to come to terms with what you CAN do and not what you can't. I am grateful to be alive. There was a time when I didn't think I would make it. Life is good, I can be a husband to my wife, father to my kids, coach girls softball, boys/girls wrestling, soccer and all this within the last 11 months. I continue to make small advances and I am only on a quick acting pain medicine (Nucynta) now. This is not the life I planned out for myself. I enjoyed golf, hiking, I wrestled in college and I was very active. My pace has come to a screeching halt but I take one day at a time and enjoy all the things I can still do. I wish everyone with chronic pain that they find some peace with their condition.i have been through so much I am thinking of writing a book to help others. There is strength in numbers.
 
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cweinbl responded:
Research demonstrates that chronic pain patients respond much better to long-acting opoiods (Kadian, Oxycontin, Fentanyl Transdermal, etc.), than to short-acting drugs (Vicoden, Oxycodone, codeine, etc.). Ask if you can start on a long-acting medication and then save the short-acting drug for breakthrough pain. It will eliminate the variance in pain related to peak and low plasma levels.

Many off-label drugs can help fight pain. For example Cymbalta is an anti-depressant with pain-fighting qualities. Lyrica and Neurontin are anti-convulsants that can help with neuropathic pain. These work well in addition to (not instead of) long and short-acting opioids.

The secret with medications lies in using a COMBINATION, as mentioned above. Remove any of them and the pain comes back. Use all of them concurrently and you can better manage your pain.

Finally, consider mind/body techniques, such as biofeedback, systematic relaxation, meditation and Yoga. I can reduce my pain by about 20% with biofeedback alone. You can also consider other non-invasive or minimally-invasive options, such as acupuncture and even hypnosis.

If all else fails, there is the intrathecal infusion pump and the spinal cord stimulator. These typically have success rates between 40% and 60% (not very high) and they require surgery to implant and to remove. Since all surgery carries morbidity risk, these should be last resort options, for patients who cannot benefit from all of the above.
cweinbl
csw2@bex.net
 
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chronic1008 replied to Jlawton1314's response:
I would urge you to be careful of anyone claiming they can remove 100% of back pain. You can read my reply below Chroni1008. I have been through a range of "fixes" with my spine and I have been battling chronic back and right leg pain most of my adult life. If anyone seriously told me they could remove 100% of my back pain I think I would run from their office (if I could ever run again). I would urge anyone out their that is dealing with prolonged chronic pain to be cautious of snake oil fixes. I am not saying to not be optimistic or hope for improvement. Quite the contrary. Maintaining an optimistic frame of mind is key to not allowing the pain to rule your life. I would not exclude the use of medicine. I was a collegiate wrestler, weightlifter and considered myself to be in very good physical condition when my back problems started 20 years ago. Since then I have gained over 80 pounds (lost over 50 of it now). I have continued daily pain and I have tried the medicine free way. My quality of life went down so now I am back on prescription meds and it helps a tremendous amount. I have a simple modo- if something increases your quality of life without risking your health, do it. I hope you find something that works for you, please keep an open mind.


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