on another board, I posted my MRI and asked about why two surgeons did not want to operate. The following is one of the responses I got and I was wondering if it sounds right.
"there is really nothing to operate on to fix. you have pretty advanced degeneration of the lumbar spine. your discs are dead your facets are arthritic.
this all causes pain and i am sure that because all levels are like this it hurts bad.
you have a couple disc bulges that encroach on the nerve roots where they exit the cord. are they causing leg pain?. if so that may be a reason to operate but because your l spine is so bad the only option would be a complete l spine fusion with removing all discs and placing cages to restore disc height. this is a huge procedure that would take probably 12 hours and only result in more pain.
so they wont operate because there is really nothing to fix.
you may try some pain management with injections in the facets and epidurals. this may help with the facet arthritic pain. other than that there is nothing they can do."
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There are many times when doctors feel that there is no fix to your problem surgically and PM may be the only recourse....as you stated....I am also one of those that from results of Xrays...MRI...and every other test they could do... I was told the same as you...Nothing will help but PM....I had surgery 14 years ago and it was only a temp fix....when you get DDD its pretty much a down hill battle...PM can help by giving you injections that may block the nerve that is being compressed by the bulging disc..
I know how you must feel...how can they say it can't be fixed...that is a hard blow to take for anyone...especially when you are having pain and are now faced with it for the rest of your life...
Go see a PM and talk with them they may be able to give you some course of treatment to help...
Years ago my niece had the procedure done with the cage,and not too long ago,they removed the cage and put two titanium rods in her back.She said she regrets getting the first procedure done.Now she is in a great deal of pain.But as you probably already know,everyone responds differently.I also was told that thers nothing they can do surgicly for my back[L4-5] but the doc said down the road i would have to get something done,he said if he were me,he wuold wait as long as possable. I know the frustration,they can send a man to the moon,do quadropal bipass etc. but can't fix my back!For now,my suggestion would be to find a good doc. who is willing to do anything[injections,meds etc,] to manage your pain to make your life as comfortable as possible.Goodluck ,and keep us informed. mad.
I am sorry to hear you are having such problems only to be told by the surgeons that they do not want to operate. I feel for you.
Most surgeons have to weigh the outcome of a surgical procedure with the pain and problems you are having. If the surgery has little to no chance of making your situation better, they are usually reluctant to go in and touch anything for fear of their liability. If the chances are good for an acceptable outcome with improved status, then they will do the surgery.
During my knee surgeries (7 of them) I had one ortho who told me point blank that he could not go back into my knee because he felt I had developed scarr tissue and nerve problems which are not his area of specialty. He said there was nothing more he could, in good conscience do for me. I appreciated his honesty in that he wasn't going to just keep operating time and time again just to do it. I had to find a surgeon who specialized in my particular problem. That was not the best experience because that surgeon was one of those that seem to keep on doing procedure after procedure even when the outlook for a good outcome wasn't so good. I was finally the one who said, "NO more cutting my knee."
Basically what I'm saying is a good surgeon knows his limits and will not perform surgery if the chances of improved status after surgery are not good. They do not want to be the reason that you end up with more problems and/or pain.
Maybe finding a specialist or a good pm doctor would be the next step? I know this is a difficult situation for you to say the least. I wish you the best.
Problem is, I do have a PM Doc, but I'm severly limited by what he will rx.
Currently I'm on the 100 mcg Fenatnyl patch with 30 mg Roxicodone for bt. the roxicodone is the only thing that helps and th Doc is very much limited by what he will rx for a base med. I've tried 200 mcg a day of MS Contin, and 120 mgs a day of Kadian and they all do not give me any relief.
Getting the only relief from your bt med is not good.
I had disks removed and titanium cages put in in the lumbar region,biggest mistake that I could have ever made.I couldn't walk afterwards and had to have a second surgery with rods on both sides of my spine to stablelize it.I live in constant pain and nothing releives it.Sometimes its best to leave things well enough alone,the out come can be worse than the actual injury.I have 4 herniated disk in the thoracic and 1 in the c-spine and I refuse to let any surgeon mess with them as long as I can function.
Hang in there,maybe a change in PM Doctors would help.Its tough being in chronic pain,it has led to permant disabilty for me and on top of it I have MS.
I have to agree with Toni in that finding another pm doctor who isn't so limited as to what he/she can or will prescribe for your pain might be a good idea. It wouldn't hurt to try and get a referral from your primary doctor to another pain management clinic.
Some pm doctors like to rely on "alternative" treatments such as acupuncture, trigger point injections, prolotherapy and other things. Some of these doctors just do not like to use medications, and in some cases, medications are truly needed.
I was just referred to a pm doctor after being referred to a pm doctor that relied solely on accupuncture and such, and although I am willing to try those kinds of treatment, I always left in so much more pain than when I arrived. I spoke with her about it and she told me point blank, "if you feel medications are needed to help control your pain, then I can't really help you." As soon as I left her office, I called my primary and told them the situation. My primary was infuriated at the pm's narrow minded thought process and immediately referred me to a pm that uses a bigger variety of treatment plans.
I do hope you will be able to get in with a pm specialist who can do more to help you. Nobody should have to live with excruciating pain when there is treatment out there. Please try and get a referral to another pain management doctor. You deserve to live a life with as little pain as possible.
I agree with the others...you need to find another PM that will use more options in treatment..whether it be in rx or injections....I changed my PM because I was in more pain after being treated by them...I went through an UNBEARABLE series of injections....Finally I had enough...I was in severe pain actually it was this time of the year 2 years ago and I got NO return phone call over the entire weekend...I ended in the ER...I had nothing in the house that would ease my pain....now I have a new PM that has me on a program that is more passive and I at least have some time that I can say I am somewhat painfree...really it's just bearable...
I know with some insurance companies its hard to find PM's that accept your plan but if you really push sometimes you can get an approval or the PM will accept you.....
Hi Alan! Just wanted to let you know I am pulling for you and that you are in my prayers, That sounds so painful, I can't imagine the torment you suffer. I have been told also to suffer, that even though they can see the bluging discs under the fusion, the facet dysfuntion and 70% loss of disc material in my lower back, tough beans, kid, surgery might even make it worse. so live with the pain.,Easier said that done! All I can do is hug you and tell you I'm hear,I'm listening, and I'm your friend. Maybe someday soon medical science will catch up with us all. Your Friend, Fabby
I Also have DDD and lumbar disc desease. My spinal cord looked like a snake but I found a doc who was confident enough to do the c spine surgery. It had to be done twice. I wont lie and say I am no longer in pain but I was beginning to become paralyzed. With all the risk involved I chose the surgery, both og them. I now live with a titanium plate in my neck but I dont feel paralyzed anymore. I would take the pain any day. I think its just a matter of finding a neurosurgeon who is confident enough to do the surgery. I wish you loads of luck and also dont give up.
Hey Alan, Your getting the standard response that back surgery to relieve back pain is a bad idea, you could end up far worse off than you are now. At best they hope to relieve the leg pain, restore neurological function and stabilize your spine so it doesn't continue to worsen. I understand feeling the need to do something if there is a chance that it will help, but thatís not always possible. However, without foot drop, loss of reflexes, loss of bowel and bladder control, impedance or muscle atrophy the odds of coming out of surgery with less back pain than you went in are very poor when your talking this many levels that has gone on for so long.
They have learned from people like me that you can't stop a total lumbar fusion at L1, you have to go up into the thoracic area T10,11 or 12 to find a stable spot with a solid disc above to stop the fusion. The only way to do this is to extend the fusion above the lumbar/thoracic junction to avoid crushing the disc at T12/L1 or developing major problems like spondyliothesis. Which could result in complete slippage that shears off nerve roots or crushes the spinal cord.
So the fusion is more likely going to extend from T10 To S1. They may even remove the ribs from vertebrae at the top of the fusion. Statistically odds of success decrease by 20% with every level involved. Even the shortest fusion from T12 -S1, your talking about removing 6 discs. Replacing them with 12 cages and possibly supporting posterior or lateral hardware. At 20% per level, you would be going under the knife with a 120% chance of failure at some level. When cages slip they crush the nerves or impinge the spinal cord. If BMP grows beyond the cages and intended fusion site you could end up with spurring or bony arachnoiditis that can cause constant spinal fluid leaks or complete paralyses. I know it's hard to imagine things getting worse, but they really can.
There will always be unscrupulous surgeons that donít care, willing to perform surgery or the longest fusion of their career. I have no doubt you can find a surgeon but you have to live with the fact you ignored every credible doc that said it was a bad idea and rolled the dice knowing the horrible odds. Therer are normal risks of surgery and risks that aren't worth taking. I'm Glad MS hatch found the right doc. But when 10 docs tell you a 6-8 level fusion is a horriable idea unless you can't walk or control other functions, you have to question the motives of the one doc who is willing to operate or who thinks he has the skill that no other doc does.
Youíre talking about 12 hours at 3K an hour so it's a very profitable surgery. Better docs wonít operate on people with such poor odds of success when there isnít a clear neurological need. IF you can walk, and have control of your legs, bowels and bladder, itís just not worth the risk of putting you in a wheelchair with a poop bag. Particularly when you know you do respond to pain medicine if you could find a more aggressive doc. Itís not rational and you wouldn't take that kind of risk if your pain was being controlled.
Rather than shopping for a surgeon that is willing to take that kind of risk without the neuro symptoms that demand surgical correction. Please look for another PM doc, start a thread looking for a doc in your area, let medtronics help you find a more agressive doc. Consider relocating if you have to get out of the bible belt where they believe without suffering there would be no rapture.
There are people with myofacial pain taking 3 times your dose, that need amphetamines to stay awake and think PT was their only PM option. I know you can find a surgeon willing to risk your future for 40K, but you shouldn't have to risk the ability to walk to find a PM doc willing to manage your pain more aggressively. Tell your present doc you want to give something he canít offer a try, something like acupuncture, myofacial release, traction, chiro. Heck you donít even need to tell him if you want to consult another doc unless you except scripts and switch docs. This way youíre not burning a bridge unless you find a doc thatís appalled by the way you have suffered for years.
If they could just get you to 50% control, you would be able to put everything else you have learned over the years to work for you and maybe build enough core strength to compensate for the mechanical problems you may have to live with. I don't squeek and crunch near as much as I did before I started working out, but I had to start slow. I started at 8 minutes and that kicked my butt. You said you wished you could do that, and you might be able to with more agressive treatment.
Heck, If you find a doc that specializes in long fusion, maybe I can give it some more thought other than when I'm at my worst and roxi feel like tic tacs.
Hang in there Bro. Dave
I'm usually on the Back Pain board but decided to check this one out and saw your post.
I have the same problem that you have. DDD and my surgeon wouldn't touch me. Told me if he did a fusion it was very unlikely that I would receive any reduction in pain and there was a huge chance of making things worse. I'm already in a huge amount of pain and am glad that he was honest enough with me to tell me the truth and not just do the surgery and make a ton of money.
I know how hard it is to be told there is nothing more that can be done for you. I'm in my mid 30's and it was very difficult to accept. I had a morphine pump implanted that delivers a constant flow of it to my spine. There are also Spinal Cord Stimulators that can be helpful (it's an implanted TENS unit basically). Perhaps you might want to discuss these options with your PM doc. That's who implanted mine.
Hope you find some relief soon. If you have any questions about the pump let me know.
Good luck and take care!
Hey Alan, Me again, I was thinking about what I said and feel bad that I may be talking you out of something you should pursue. I believe everything I wrote, but I do know that if my cousin had simply excepted pain meds he never would have been diagnosed with cancer. He was 20 years old and this was before OxyC and pain meds but he went to the ER and saw 42 different docs for testicular pain, He was labaled an addict and given the DX epididimitis, which is just an inflamation of one of the tubes on the testes.Anti biotics and pain meds were the standard of care and then just antiB's because he had to be a junkie acording to doc 12-41 . It never dawned on the docs to look for cancer in someone that didn't fit the profile. If he hadn't seen doc # 42, he would have died from testicular cancer at the age of 20.
Maybe you do need to see 20 different surgeons and get as many opinions as possible. There is new hardware out that not every doc uses or even knows about and new stuff coming out every year. So do what you feel you have to do, including finding decent PM while your looking for an answer you can live with.I'm still looking for an answer. Maybe they will figure how to reinflate a disc one of these days.
Tak care, Dave
Alan the document and or you metioned artithus in your spine ddd Have you been refered to a rhumatologist that may approach the degrading spine /joints from another perspective? If there is severe imflamation there the rhumatologist can assit in getting that treated as well. and perhaps slow down the proggesive nature of these types of problems.
Please do not assume surgry is the answer. So many folks that have had multi level fusions and or singal level
fusions did not have a good or even great outcome,
I had a double level fusion Jun 2 years ago all it did for me was allow my spine not to fuse wrong < it did not relieve the pain and i had some of the worst moments ever after the surgery and still in pain management today.
You have had some great recomendations from folks that have or in your shoes at this time that share a commonailty of having been there or going through it now.
While the thought of finding another doc doing more tests seems to be another mountian to cross, in the long run it may just be a part in your needed on going treatment to be more comfortable with your on going conserns .
So i would recomend a rhumatologist for the imflamation issues and perhaps a different pain management doc.