Hello everyone, I am new to this but I have had a struggle with pain for a long time. I am 38 and just had a trial with the pain stimulator. I have had two surgeries which was L4, L5 discsectomy, and then a fusion 2 year later. I re injured my back 2 year ago and have since suffered from chronic disabling pain. Diagnosed with DDD, sciatica, buldging L5s1, piriformis syndrome, and mild stenosis, and mild osteo arthritis in my spine. Anyway, the trial with the pain stimulatoe did help but it didn't take away all the pain and I am afraid even if I go ahead with the trial my doctor will cut off all my pain meds and I made it clear when I had the trial removed that although I did get some relief from the stimulator, I did still have to use my pain medication but , not as often. I just don't want them to say that I chose the permanent implant and I shouldn't need the pain medication. Has anyone else had this problem and if so any advice. I am suppose to be getting the latest stimulator from medtronics, called the sensor. It is pre progrmed for my movements and automatic adjusts. It recognizes if I am walking laying down or standing and it adjusts to that setting. If anyone has this please let me know how well it works. I am so tired of being in pain.
I'm assuming that you're talking about the spinal cord stimulator? My ailment is different from yours (I have late-stage RSD), so I can only speak for my particular disease. However, I have an SCS. The SCS is considered "successful" if it reduces pain by 50% (per my doc), which is the most I've achieved via SCS alone. My doc continues the pain meds (Fentanyl patch) to treat the remaining 50% of pain and to help with breakthrough pain. For RSD patients, depending upon the severity of the disease and relief received by the SCS, pain meds in conjunction with the SCS is standard procedure, at least according to my doc. Then again, protocol could vary among doctors and ailments/diseases. I would suggest you ask your doctor if he/she will continue prescribing pain meds after the SCS implant. I hope this helps, and good luck to you!
The Following User Says Thank You to Hushie For This Useful Post: Audreys dad (08-08-2012)
Thanks so much but, my doctor is very tight on prescribing meds. I told him that the MS contin Morphine 30mg 12 hour release wasn't even helping and he just says he will not change it and he is adament on taking the 2 30mg Morphine a day along with Cymbalta 60mg once a day, and 1800mg of neurontin. Even though I told him the trial did help and I would like to have the permanent implant I am just afraid of getting the permanent imolant and then getting some pain that gets me down regardless of having the SCS and not getting the meds I need from this tight doctor. Would my referring family doctor be able to help? Thanks for the response and GOD BLESS!!!
I see your predicament. I would express your concerns to your family doc and ask if (a) they would be willing to provide you with pain meds if you need them post-implant and/or (b) if they could speak with your doc who's reluctant to do so, and/or (c) ask if your referring doc can recommend a different doc (PM?) who might handle the implant (assuming a PM doc?) so that you can get a second opinion to see if another PM would be willing to handle your SCS implant and prescribe pain meds, if necessary. Although my PM writes refills for my pain meds, my family doc does as well, if my PM is not available and I'm out of meds, so maybe your family doc can do that same? It certainly wouldn't hurt to discuss it with your family doc.
The following user gives a hug of support to Hushie: Audreys dad (08-08-2012)
Thanks for the input. This is really good advice, and I hate that the doctor makes me feel like I am just trying to get pills but, I really don't like them but, I don't like the pain I have either. The strongest thing they have give me was percocet 10, and this pain doctor has changed it to the morphine 30mg extended release and it is no better than taking a tylenol. I get so bad that I have to go to the ER and get shots but they only last a few hours. Even the ER doctor told me I needed to find another doctor. My Pain doctor now says he is not a pain management DR. but a interventional pain doctor. I just have to do what I have to do. I mean I am 38 and was awarded my SSDI in just over a year and without an attorney but I knew about the listings and out of the 5 I met 3 of the listings in the blue book. So, it should be aparent to the doctors that something is wrong. Anyway, sorry to go off on this rant but I am about to go crazy from all the pain and lack of sleep.
Dear Audrey's Dad,
I have had two SCS put in. My first one in 2008 and then the doctors thought I would get better coverage with a St Jude's one that was place last year 2011. I have remained on my pain medication the whole time. The stimulator when put in needs to be placed right and takes a while to be adjusted to be effective. The adjusting period could take months to get it right. Second, the SCS is only to help with the pain. It is like turning up the tv if you have ringing in your ears. Personally I can't have it on all the time. There are numerous reasons why you should stay on your meds. The biggest one is because with this disease there is not one thing that works totally with the pain. You need a range of things to help you deal with it. If your doctor doesn't understand that....you have the wrong doctor!!
Hi, Audrey's Dad. Rant as much and as often as you need to. We all need to sometimes. If your doc is not a PM doc and does not understand your medical issue and the chronic pain associated with it, indeed, it sounds like you need a new doc. As for sleep, I take trazadone. It doesn't address the unrelenting pain, but it does help you sleep (or what we've all come to know as something resembling sleep). It's the only nonaddictive sleeping med that has almost no drug contraindications. Many docs don't know about it (it's been around forever) and will instead prescribe Lunesta or Ambien, which have many undesireable side effects. I know you said that your doc is "tight" with meds, but given that trazadone is not a narcotic sleep aid, he might not have a problem with. I hope this helps!
The Following User Says Thank You to Hushie For This Useful Post: Audreys dad (08-20-2012)
Hushie, Thanks for the reply and info. Although my doc. is a interventional pain doctor so he says and not a pain management doctor. Go figure anyway the trial for the pain stim. went well I hope to get the permanent one soon. I have a consult with the surgeon on August 23. Wish me luck. Thanks to all....
Hushie, Thanks again for the concern. The trial did help but I would say reduced the pain around 40% but, sometimes I would hurt worse down to only helping around 15% at times. When I would turn the stimulator up enough to help it was so striong I couldn't walk, it was really weird in my legs, also it didn't help my lower back pain. However, after being in constant pain for the last almost 3 year now, the relief I did get was more than welcome. I just worry about SSDI saying I am better and then I loose it. I still can't hold down a job down even after the permanent implant. I remember when I filed for SSDI, they told me I couldn't get it with only having chronic pain. They said their had to be an underlying problem like a pinced nerve or nerve root compression, or nerve damage. I have permanent nerve damage and radiculopathy in my right leg that is very advanced. I also have several bulging discs all through my lumbar from L2, all the way to L5 S1. I have spinal stenosis and Osteo arthiritis in my lumbar also. The L5 S1 has a nerve root compressed and the sciatic nerve was torn and that was when I had my first surgery in 2000, and it is and will never heal back. That is the permanent nerve damage. Like my Pain doctor said; They are not fixing the problem, they are just dealing with the pain, the underlying problem is there and other surgeries have been said to be of no help. I hope SSDI don't give me trouble when a review comes up. Anyway thanks Hushie for allowing me to rant on and on. May GOD bless you richly for having such a caring heart for someone you don't even know.
Audrey's Dad, I have the same results from my implant, ranging around 15% to maybe 50% pain reduction, but it never takes all the pain away. For me, it seems to reduce some of the constant sharpness of the pain, but, again, to varying degrees. But, like you, I'm thankful for any degree of pain reduction. And, like you, they can't turn my SCS up because of the intense pain it causes, and, for my disease, the risk of aggravating the RSD and causing it to worsen.
It's my understanding that SSDI bases their decisions upon the doctor's determination, and, as you said, your doctor stated that implant will not "cure" the underlying cause, and he knows from the trial that it will give you at most 40% pain reduction. If the underlying cause still exists, then it would seem that SSDI shouldn't take issue. Of course, this is only my opinion. I'm not on SSDI. Just basing it on the info you provided as to their basis for awarding you SSDI. I would suggest discussing this concern with your doc after the implant has been in for a month or so, which would give him and you enough time to perhaps evaluate the level of effectiveness of it.
I feel your frustration, though, with all of it--the surgeries, the constant pain, the meds, the doctors, and wondering if ever you'll get any good news. It's exhausting and it just beats you down. My disease (RSD) left me permanently disabled without the use of my left foot, as the disease moved rapidly and the docs missed diagnosing it until it was too late. Can't use the foot, but the pain in it is unrelenting. I have one good leg--my right one. But my disease has now spread last week to that "good" foot and up past my knee in my left leg. I'm having my SCS reprogrammed tomorrow to try to stop the progression in the right foot (I can still use it right now, although it hurts) and stop the spread up the left leg. I think the only reason I'm not panicking is because I'm stunned, although I feel the panic simmering in the back of my mind. All I could think is, this is all so ridiculous--so absolutely tragically ridiculous.
I know it's nearly impossible to not worry about your SSDI review right now. But maybe try this, which is something I do that can sometimes help. Right now, you can't do anything about the review b/c you don't have the implant in yet, and the review isn't here yet, and your doc hasn't done a post-implant evaluation. It's out of your hands right now, so try, if you can, to not worry about it, just for now. Focus on what you can control. Your implant surgery is coming up, so focus getting your ducks in a row for recovery period (things you'll need such as meds/ice packs, pillows, etc., favorite movies/magazines, video games to occupy yourself-and your mind, etc.).
Sometimes just taking control of those things that you actually can control helps, and letting go, even temporarily, of those things that you cannot immediately take action on, can take some of the weight of the world from your shoulders, if even for a day.
I don't know if this is an option for you, but if you're able at some point, perhaps you might consider taking online courses in a field that will eventually allow you to work from home (after you get past your SCS surgery and SSDI review, etc.)? If you can do that, you might feel more in control of your "new" life. Sometimes even just doing some research into these things can provide hope and a glimmer of sunshine.
The following user gives a hug of support to Hushie: Audreys dad (08-21-2012)
The Following User Says Thank You to Hushie For This Useful Post: Audreys dad (08-21-2012)
I wouldn't worry about your SSDI. You will not be better enough to carry on a job. It might help with the pain. I had my second implant put in May of last year. They put in 16 leads trying to cover my lower leg and back. Unfortunately it doesn't cover my back at all and only 2 leads cover my left leg. The back (the stimulator reps) they tell me has so many nerves that it's hard to cover the right area. My stimulator is exactly middle of my spine, but the leads are mostly covering the right leg instead of the left. You need to go into the surgery with an open mind that first it will take a couple programming sessions to get the right one for you and second it is not the answer to stop the pain. It can help. You have to take the good with the bad in the stimulator. It's hard to get it perfect. Good Luck!! As long as you know what to expect.... you won't be heart broken!! Take it one day at a time. That's all we can do with this~