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Old 10-06-2012, 01:02 PM   #1
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Unhappy Multiple spine issues with chronic pain

I'm at my wits end and feel like I'm out of options for relief.

I have always been in good health and could out work most people half my age. Physically strong and rarely went to a doctor except for routine exams. In 1987 my feet keep going numb. I have had my back go out since I was a teen once and a while but didn't relate it to that. The long and short of that is I had 3 herniated discs in lumbar and the surgeon said let me know when it's time(r I was on pain Meds) . I keep working for a year until it was unbearable and he did a lumbar lam on only the worst one L 5. I came out pain free.
In 2009 my low back was getting real bad again and went under a pain management docs care for pain control. MRI showed disc bulges at multi levels and degeneration. 2010 in June I was carrying and setting up heavy photographic equipment and felt a strong pull and pain by my back left shoulder blade followed by neck pain . Keep going and the neck pain subsided but the pain in shoulders and arms got worse. First MRIs thoracic showed hernias in thoracic and cord impingement , then specialist said it's C 5-7. Still working but in the care of workers comp( I won't even get into that mess) one year after injury I was convinced by two neuro surgeons a ACDF was my only chance at relieving the pain , but not gaurented. By this time I had also developed nerve damage. I went into surgery with a great attitude and woke up in so much pain I couldn't move my shoulders they felt like they were crushed. During this time my low back was getting very painful even with the percocet . At six months post op my pain management doc put me on fentanyl patch25 mg two months later 50 mg I started functioning almost back to my same healthy strong self for about 3 months. The pain level starting going way up to 8-10. Three to four days a week I spent lying in bed. Pain management doc said I should see a neuro . I went to the U of M (Michigan) spine program only saw the P A . Her response was you don't have one good disc in you spine. Thought I was going to get on the road to relief . Bad experience. She followed through with nothing, lost all my MRI reports didn't do comparisons ordered lyrica never called it in then decided she changed her mind and didn't care for me seeing my pain management doc( which initially wasn't a problem) so she wouldn't call Meds in even though my pain doc sent her my records which of coarse she couldn't find as well. I called her in extreme pain not knowing what to due , asking for medical guidance. She didn't know but her suggestion was to get off all pain Meds and my body would control the pain. I just can't imagine how I could physically tolerate the pain. ( I use to have a fairly high pain tolerance). I suggested physical therapy. She thought I already did had PT . So she ordered PT and would only allow massage and traction of lumbar spine. Which I was told it's only done for one level. I had a fantastic girl for PT that really knew the function of the spine. She did manual traction and massage also called to get permission from doc for muscle stimulation. At the end she saw no improvement where she felt I should have gained and suggested that I need to see a surgeon.I should also note the pain doc did nerve burns and blocks on my lumbar every 6 to 7 months since 2009. They always helped until this past year. My primary sent me to one of the best neuro surgeons yesterday. I would not have another surgery but my hopes were that he would look through the past three years MRI s and the current one. Make a comparison and have some suggestions. He looked at the current one at the appointment and said there's many multiple level problems and surgery wasn't a option because there's no way to know which one is causing all the pain. I respect him for that. Also it's most likely I will always have back pain. So now I don't know where to turn . As the pain doc said he can only try to control pain. He also suggested a surgeon. I can't even imagine what these drugs are doing to my body or living with chronic pain. My vitamin D is low but not severe, level 22. I take a high dose of over the counter D.
If anyone has some suggestions. I'm all ears.

 
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Old 10-19-2012, 07:59 PM   #2
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Re: Multiple spine issues with chronic pain

Pain-first welcome to the boards. having read through your post, I don't quite know what to say. I am so sorry that you have experienced such issues.

First, you can live with chronic pain. Many of us do. But, you need to figure out if the pain is going to run your life, or if you are going to control the pain. IT is a choice that you have to make. I can't say that it will allow you to be totally pain free, but it will change your outlook. It doesn't make you days all sunshine and roses, but you will be the one to decide the protocol..

You need to have a good PM. If you have one that you like and trust-great! If you don't-find one. This doctor will be your best friend if he gets your meds right. And you need to try whatever he/she suggests so that you will find whatever will work for you.

In addition to pain meds, there are many different things that you can use to help control the pain. TENS units, PT, yoga, meditation, water therapy. In addition to that, there are ice and heat, things such as Voltaren, Biofreeze-both topicals that can aid in pain control. There are many things that you can use-that we all do-to help control chronic pain. Unfortunately, it's something that you will need to learn.

I am fused from T9-sacrum. I will and do live with some degree of pain for the rest of my life. I will never have full use of my left leg due to my back having broken after a 3 level fusion. It wasn't what I had expected nor what I wanted. It was a life changing even and not my list of things to do the rest of my life. I empathize with your issues and your pain.

Keep you chin up and don't think of what the meds are doing in your body, but how they are helping you maintain your daily life. Please come back and post often and let us know how you are doing.

Last edited by ibake&pray; 10-19-2012 at 08:00 PM.

 
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Old 10-20-2012, 04:12 AM   #3
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Smile Re: Multiple spine issues with chronic pain

Thank you for your kind words. Finding ways to deal with pain has now been my road to travel. I'm sorry for your situation as well. I try to always think it could be worse because there are others that are dealing with life and death a life and death illness. Bio freeze , heat and ice have been my good friends. I'm just very frustrated with the medical system that doesn't look through your records to put the puzzle together and work with the specialist they send you to. To much auto nation these days and lack of personal care but ill work that out too. My best too you and again , thank you.

 
Old 10-21-2012, 06:49 AM   #4
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Re: Multiple spine issues with chronic pain

Hi Pain Overload. When surgery is no longer an option as it is with my back, 3 failed fusion , the last was L1-S1 I wouldn't go under the knife again unless I screw or rod popped through the skin or I lost control of my Bowels or bladder, all they can do is treat the pain. Even then The best I can hope for is 50% reief and that still leaves me disabled and unable to work 2 days in a row. I get that you think a comparrisoof prior MRI's may give them some information, However what would it change as far as you present circumstance. Living with CP is about acceptance and even if they did look at every MRI for the last year10 years and say yes, back in 20021 one they might have been able to do something about one docs or 5 discs,, but it wouldnt change where you are now. Now you have to accept that tis is as good as it gets and it may never improve and will likely get worse. How fast it gets worse isn't up to what meds a doc gives you, it's about how you adapt to your new circumstances as far as working and causing further damage. If the best you can do is excercise and keep your core strong so you dont loose any more function is the patients responsability. The docs at this point can oly do their best to make the pain tolerable, complete rel;ief is never the goal ofpai management, They may be able to double or tripple your meds at this point but to maintain that level of relief if your not adjusting your lifestyle you will reach a point where the side effects of the meds become so severe the meds themself will become the disabling factor. Nobody wants to hear they have rerached max medical benefit from PT or from any treatment but if that's the case, all you can do is your best to maintan where you are now and continuing to push yourself beyond your own abilities and expecting a doc to keep up with the pain meds to allow you to continue to do damage isn't a realistic expectation. You may very well may end up disabl;ed and unable to do any type of work, But as far as the definition of disabaled doesn't mean you can nolonger do your present job, It means their isn't a job out their where they can make enogh accomadations to keep you working 40- 60 hours whatever you have done inthe past. The folks at social security may recognize your old job is too physical, but if your able to sit in a gas station booth and sell ciggerettes, you wouldnt meet Social security definition of disabled and they would expect yu to change your job and except a lesser paying job if you are physically cabpable. A surgeon that looses his primary hand may no longer be able to operate but it doesn't mean he cant teach,consult or continue to due medical exams and treat patients in non surgical ways. It's all about adapting and acepting and at this point what does it really matter what pieces of the puzzle slipped together in what order at this point. It wont change your treatment options or condition today.

If your having dificulty accepting and addapting I would strongly reccomend you find a PM psychologist to help you learn to cope and addapt because even if they missed the window of opportunity to operate and fix one area, It likely wouldnt change the problems you have at every other level of your spine. So what's the point of being angry nobody did a comparison study at this point. What your experiencing is part of the grievng process of what you have lost and what your facing in the future. The fact you do have a PM doc willing to help you cope with pain with meds is a leg up on people that haven't found a doc that will do this because they still can't figure out what is causing their pain.

A lot of DX's are just descriptive of your situation. In my case, "failed back surgery syndrome" "Lumbar radiculopothy," Stenosis, Myofacial pain syndrome, non union of fusion, DDD are just a few of the DX's they throw around, not that it matters, you can't go back and make a surgery not fail. I totally get this isn't what you wanted, expected or planned for, but the ability to adapt and tolerate change is what seperates us from every other species.

At this point the important thing is for a doc to manage your pain enough so that you can do everything in your power to prevent further decline in physical status. If you become sedentary and dont leave the house their isn't anything worse for you physically or psychologically. Hate to say it, but you have to be greatful for what you do have and only you can determine to see and apreciate those things . It truly is one of those "is the glass half full or half empty," situations. If you choose to be negative it wont fair well with those close to you as far as freinds, family and loved ones. I can't imagine anythng worse than being alone with nobody to care for and nobody caring about you because you became sullen or angry and ****** at the world. You can push the people in your life away because you dont believe they understand, think they diserve better or whatever is going through your mind or you can keep them close and do everything in your power to prevent further physical decline. Which means excercise as crazy at it may sound.

Although you reached Max medical benfit from PT, It doesn't mean you should stop doing all the excercises and spine stabalization techniques you learned while in PT. I started this jouney back n 93 when the first back surgery failed and I still do the core stabilization excercises I learned back then along with cardio to maintain my endurance. I also reached max med benefit from PT but after 19 years their isn't much more they can teach me as far as how to keep the strength I do have and how to get my spine back into a nuetral position that isn't as painful. Sure a massage would feel good a couple times a week, but insurance isn't going to pay for that forever for anyone. I excercise as often as possible and when I'm in so much pain I think Im going to loose IT I figure why not excercise and get an endorphin release and know I'm doing something positive to improve, strengthen or stablize my spine despite the bucket of broken hardware I walk around with.

It doesn't sound like you haven addressed the psych componment of being in CP and loosing function and all that comes with CP. That's where you cant be to proud to ask for help aside from asking your doc to increase pain meds to cope.

Meds dont change your outlook for the better, only you can do that and that's what will keep your loved ones, friends and family around rather than forcing them to watch your contiued decline both physically and psychologically.

Sorry about the grammer and spelling errors, yesterday was one of the two days I still work and I haven't slept more than the few minutes I fell asleep watching TV after I got back up after my wife fell asleep. It doesn't hurt me to keep my wife happy and have a husband in her bed every night, even if it's just till she falls asleep. I'm paying for working yesterday, but it's still worth it to get out of the house and having contact with other adults and feeling like I'm still some what productive rather than just a burdon on everyone and every thing. At this point working has more psych value than physcial or financial. Their is nothing more unhealthy than being homebound, sedentary and cut off from the rest of the world. Their is only so much good TV even with 400 channels and you have to find something to distract you and keep you from constantly dwelling on your present level of pain or wondering what they might have found in a comparison study.

That is so far from being relavant to your present situation you need to let go of that and focus on what you can do, now.

Hang in their and welcome to the forum. Take care, Dave

 
Old 10-22-2012, 01:56 PM   #5
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Re: Multiple spine issues with chronic pain

I'm so sorry about what you're going through. I also have spine issues and a disabling back pain. I feel the same as you, more surgery is not an option for me. I don't want to put my body through that. It seems like surgery is so difficult to recover from without much relief from the pain. I think there is a point when you just have to look ways to manage the pain so you can live the most comfortable life possible. There are options available, that offer some comfort and relief like massage, etc. I just think it's important to keep an open mind and look at additional options to your pain management regiment. Also, ensuring communication is so important with your Doctor and PA,I know it can be difficult. But, what that PA put you through is really unacceptable and should be called on it. That PA sounds very disorganized and her supervised Physician should be aware of what occurred.

This is wonderful group for support. We are an empathetic group that understand how chronic pain impacts our day to day lives.

~ Fiona Jo

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Old 10-25-2012, 06:49 PM   #6
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Re: Multiple spine issues with chronic pain

Thank you very much for your support and kind words.
My frustration was and is over doctors that don't look at tests and records along with not following through. I have a good pain management doc and like he says he can only help control the pain. The surgeon I went to ( I wasn't looking for surgery I was hoping for a good evaluation and alternative options) he stated I have so many issues in my spine there's no definitive one to repair to help the pain. In fact it would cause more pain to go in and find out. To me that's a excellent surgeon. A teaching hospital in my opinion would though evaluate the patient history but instead I received a appointment/ referral in the mail to the spine center I started at with the unorganized PA. So I'm just doing my best to work through it with Meds and mental distraction. Doing the best I can with what I'm dealt
On the good side my pain level hasn't gone above a 7 for two weeks. I can handle that.
My best to you and everyone else that responded and is coping with the same..

 
Old 10-25-2012, 06:50 PM   #7
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Smile Re: Multiple spine issues with chronic pain

Thank you very much for your support and kind words.
My frustration was and is over doctors that don't look at tests and records along with not following through. I have a good pain management doc and like he says he can only help control the pain. The surgeon I went to ( I wasn't looking for surgery I was hoping for a good evaluation and alternative options) he stated I have so many issues in my spine there's no definitive one to repair to help the pain. In fact it would cause more pain to go in and find out. To me that's a excellent surgeon. A teaching hospital in my opinion would though evaluate the patient history but instead I received a appointment/ referral in the mail to the spine center I started at with the unorganized PA. So I'm just doing my best to work through it with Meds and mental distraction. Doing the best I can with what I'm dealt
On the good side my pain level hasn't gone above a 7 for two weeks. I can handle that.
My best to you and everyone else that responded and is coping with the same..

 
Old 10-25-2012, 07:23 PM   #8
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Re: Multiple spine issues with chronic pain

It looks like you have only seen neurosurgeons. Unless you have completely thrown in the towel on surgery, I would suggest you make an appointment with Richard W Easton. He is about the only surgeon in MI who will take on complex reconstruction surgeries of the spine.

I don't understand why the U of M spine program has a good reputation. Everyone I know who went there had an experience similar to yours....weird.

 
Old 10-25-2012, 08:30 PM   #9
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Re: Multiple spine issues with chronic pain

Not really. Even the nurse at the internist they referred me to had a bad experience there and said she wouldn't return. I wouldn't have surgery any ways. U of M neurosurgeon said it was not a good idea unless it was one definitive level or area.

 
Old 10-25-2012, 08:37 PM   #10
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Talking Re: Multiple spine issues with chronic pain

Sorry I read your post wrong. Yes the spine program was very disorganized by my experience. I do see pain management, did PT and see internist . PT , PM and internist all suggested the neurosurgeon for lumbar because the pain gets out of control. Trying Meds and mental strength , and as much physical movement to adapt . Thanks

 
Old 10-31-2012, 04:04 PM   #11
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Re: Multiple spine issues with chronic pain

That's too bad because orthopedic spine docs are often willing to take on situations that a neuro won't touch. You're really limiting your options by not getting an evaluation from a top-notch ortho spine surgeon....

 
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