AVMED refuses to pay for my IDET...but that might be a moot point because I went for a second opinion to another OS and he said IDET is a waste...70% success rate is too high...but then he dropped this on me:
He said I have the back of a much older person (I'll be 46 next month) and said with the 4 level stenosis and herniations and with the 4 level DDD, there is NOTHING I can do right now, He cited some of the new things coming up, like ADR, but he told me to try accupunture and otherwise, I have to live with it.
The only thing keeping me sane is the meds-which really just take a small edge off-and my sense of humor!
That's unfortunate. Have you taken a pain management class just to learn some new ways of coping with the pain at all? I know it's not a cure all but it does help even if it's only in the psychological sense and you get to meet folks who are in a similiar situation as you and form a good support team
Just a thought anyhow..
I really hate it when doctors just tell you to "live with it", you know if they had to live with it they wouldn't. OS's are terrible for pain management unless you just had surgery and then the limit that.
Acupuncture can help as well as massage therapy, many insurances are allowing massage therapy, worth checking into at least.
Don't give up. Like Kissa said if the doc had to 'live with it' it would be a different story. Don't try everything in the book but keep looking for something that could help your pain. My doc has told me basically to 'wait for the research to catch up' but I can't just wait. At least searching for that alternative treatment keeps your mind busy. lol Good luck.-Mush
My insurance also declined the IDET procedure for me last year. I ended up having a fusion in January. I also have DDD and arthritis in my spine. My doc says I have several levels going but he only fused the worse. He is hopeful that I can hold out until the artificial disks are improved. I know how you feel.
When I was in the holding room for my diskogram the doctor had looked at my CT Myleogram before he came around the curtain. He instantly said I expected to see a 90 yr old woman lying in this bed when I looked at these films. I am 32. I was 31 at the time. Imagine how that made me feel.
In my opinion, I would hold off on a fusion until there is no way you can stand it any longer. My fusion helped my right leg pain but the removal of the bone grafts from my left hip caused nerve pain in that leg. Plus, I am still dealing with the pain in my back. I was warned beforehand of all this so I am not in any way angry about it. I was at the point that I was ready to try anything to get relief. I just wish things had gone a little differently for me. You will know when the time is right to undergo a major procedure. Don't let anyone push you into having surgery because if the results aren't that great you will definitely be angry and majorly disappointed. I am disappointed but I have no reason to be angry because I knew going into it what the chances were.
I have to agree with you on that one Sherry, definately put of such a fusion until you don't have a choice, it seems the success rate is more like 50/50 anymore. Of course you are going to hear more bad things than good no matter where you go.
Thank you for the responses. Right now, I'm really in limbo and the IDET was supposed to be the one last thing to do before fusion. But the bad thing is that I am getting worse every day and now I feel my left leg getting so weak that it is hard to stand.
Ah....well, there are others worse off than I, so I should stop complaining.
Hey Alan, I wouldn't take one surgeons opinion as the end all truth and having to live with it is just his way of not dealing with you as a person.
Pain management has cought up and surpassed many older invasive procedures that the unfortunate guinea pigs paid the price of finding they really aren't that effective. 70% sounds like great odds but who is he quoting as far as odds, or is he speaking of experience with his patient population. If he's talking about his population there is a reason he's claiming such a high success rate and it's not likely acurate because they don't lok at more than a year or so past the surgery to call it succesful.
Every surgery I had was claimed a success at the 6th month or 1 year point by the surgeon when he dischrged me, they were a success right up untill hardware started snapping. I know my failures aren't calculated in those docs odds of succes they claim because when they released me after a year they called things mechanically sound or solid and had me on no meds with few choices other than love with it. I wasn't going back to the same surgeon that wouldn't listen to me about how I was doing but based success on simple Xrays that really don't show sqaut a year post fusion. Xrays don't tell you if bone is alive or dead and just sitting there.
Remember Prolo therapy, gone by the wayside because there wasn't a way to control what areas would be effecteed by Prolo. I haven't heard any odds that would closely resemble a 70% success rate with IDET. IF anything your insurance may have done you a favor. When in pain we tend to be willing to except what sounds like reasonable and even less than reasonable odds.
I'm convinceded that some day my body will be found and all the hardware will be looked at as completely barbaric and an entirely inefective way to treat the problems I had. But I was in so much pain and forced to live with no alternatives for so long I rolled the dice even facing bad odds.
ADR is a possability, THere is one disc tha is very close to FDA aproval, but you realy want the folks that developed it to do the surgery, not some ortho that took a weekend off to learn a new procedure from the docs that have implanted tens of thousands of these discs.
Stenosis can be surgicaly corrected if it's done before major damage is done to the nerve. Keep an eye on the ADR and FDA aproval, the stenosis can be taken care of at the same time and pain managent is an option. Some things you try will help and some won't, you toss the ones that don't and focus on what does. It may take consulting with several PM docs before you find the one with the right beliefs and ability to offer modalities that help you.
I have met at least a dozen PM docs and half of them had one trick up there sleeve , applied it to every patient they saw and if it didn't help, you get the live with it speech. Lik trying to slam every peg through the same hole regardless of size or any other factors. You don't have to live with it.
It's not consdidered doc shopping to continue to seek alternative modalities and treatments from different docs. Just follow common sense when it comes to accepting meds and changing docs rapidly.
My mom recently had a total mastaectomy, she was having a horriable time with phantom and nerve pain as the severed nerves either died off or began growing looking for some new place to attach. Opiates realy were not helpng and she wasn't comfortable with the idea. Her doc prescribed elevil and it gave her relief. As the nerves are calming down she is reducing her dose and doing better. To me Elevil would be a joke, but it does help some people.
Elevil is probably the absolute first line and oldest treatment in opiate phobic and agressive PM docs, they won't help everyone, but they do help some. So just because something sounds like an older idea, or not what someone else with your same condition found relief from it doesn't mean it won't help you. Just sleeping beter can improve your outlook greatly.
Hang in there, keep looking for an answer and be open to trying diferent things.
My basic phylosophy on good PM is a doc or group of docs that have more than one modality to offer and are willing to work through the process of elimination to help you with the pain. Opiates really shouldn't be first line but suffering is what PM docs need to eleviate.
The folks that make the Intrathecal pump can provide you with a list of docs certified for implants, this may lead you to a PM group that does offer a full range of service to help anyone regardless of where they are on that bell curve of Pain management. I called the manufacturer to see who else in my area did implants and my doc was one of the names given. You may not be ready for a pump, but it's a good back door way to find someone with more than one way of dealing with pain and that doesn't have the "live with it" attitude.
2 and 1/2 months post IT implant, I was getting discouraged because my expectations were high and I saw it as my last hope. I talked to my regular PM "not the official pump guy in the practice " although he can certainly make adjustement to the pump this week and he said not to worry, we wrote down a list of all the posible things we can still try with the pump along with adjunct modalities and ways to make function easier.
We actually talked about the stand up motorized scooter, can't hink of the name, But it would solve part of the problem which is my walking tolerance. It's depressing living next to multiple theme parks and not being able to walk through one for a day with my daughter. The stand up scooter may be something I would try. For whatever reason that doesn't bother me as much as the idea of a wheelchair. I wouldn't want to become dependent on the tool and I would continue to walk as not to loose strength, But there are answers to functional adversities.
I left feeling better knowing there were still many things to try and ways to look at overcoming problems. My doc isn't a saint and there are other docs like him across the country. It took me a dozen other docs and 8 years to find my way to his office when he's been in my own back yard for twenty years. But a surgeon that doesn't believe in PM or his methods was never willing to referr me for the type of pain management I now recieve.
It's not perfect, but it puts the question of how am I going to live like this out of the forfront of every thought. There is a doc out there that can lift some of the burden and distress and alleviate a good chunk of your pain. I'm not saying you won't have to take care of the mechanical problems at some point surgically but If you see 10 surgeons you will likely get several with the live with it attitude and several that have completely different ideas about the right surgery.
It's sorting out what's right for you and knowing you may be playing guinea pig for a new technique. But techniques change. 4 years ago, there was no surgical solution for me, 2 months ago a very new and radical aproach was offered, but I have spent my time as the guinea pig. A few years from now if that method becomes a standard and proven I may be willing to have surgey again, that was something I never would have considered a few years ago.
Don't give this doc more power than he deserves, It's just another opinion. See more docs and you will get more opinions. Then you can make an educated decision, not feeling like X is your only option. It's not at all like if an ESI doesn't help your done, Wtith what I know now about ESI, I wouldn't allow one to be performed on me. But in the mid 90's when that was all that was being offered, I had a half dozen.
I had the IDET and it failed to help me. In fact, it has made things worse as they are finding that the IDET can cause just as many issues as those lucky ones it helps. (My brother had it and is now playing golf all day.) My insurance wouldn't pay for it either, but I might be able to get a percent of it written off with letters from the two surgeons who recommended it sent along to the IRS.
I am trying desperately to get into the clinical trials for the Artificial Disk replacement clinical trials that are going on all over the country. You could try that.
There is also a new one a day 24 hour timed-release morphine that has been released. I am scheduled to be switched onto it from Oxy on Tuesday. I hope it works as it's supposed to have less side effects. Wish me luck.
Dave, I think you missed the point of what happened. First of all, I'm already seeing a PM and am on MS Contin 60mg 3X with MSIR 30mg up to 3x.
The point of me seeing this particular OS was a second opinion on doing the IDET. He feels it is a waste of time. When he said that there was nothing to be done, he was saying that with 4 levels of stenosis and Disk degeneration, surgery was not an option he felt was viable at this time.
He did mention accupuncture, which I will look into.
But it was not like he was passing me on with a wave of his hand.
I do appreciate your comments, as usual, but I felt that your comments here did not match the reality of what took place.
Hey Alan, Let me try to explain a little better, I went back and read and see the situation. You had a doc that believed in IDET, this gave you hope of a possible cure, Insurance balked so you hoped a second opinion confirming the value of this procedure may help move things along toward a solution you felt would help.
The second opionion doesn't believe in IDET or doesn't do the procedure for whatever reason, Too many levels was the jist, correct? But IDET won't do a thing for stenosis which is likely the cause of most of the leg problems and radiculopthy.
So this one older procedure that really has fallen by the way side other than docs that continue to do it knowing that you will likely remain a patient and take the next step or jump through the next hoop looking for a solution. A solution is better than any thing the greatest PM can do and something we all wish for.
2 docs opinions on what your options are isn't enough to satisfy me. Particularly when your talking about an older procedure with iffy results. 4 levels of stenosis doesn't make you inoperable to every surgeon. It may make you a poor candidate if the surgeon prefers and only learned to do single or dual level fusions or discectomies and procedures he's confident in that he's experienced better succes rates with. With basic procedures it's easier to maintain a high success rate.
But it still apears you haven't run the gammit of surgical consults or posible procedures.
I didn't read anything about instability of your spine, so fusion isn't my first thought although 4 levels or 6 levels doesn't mean your wouldn't be a candidate for the right surgeon that is more concerned about your future than his statistical success.
Watch some of the discovery shows about super surgeries and you will see things you thought impossible. LIke removing entire vertabrea and replacing them with a spacing device. There might only be a handful of docs truly capable of doing this procedure, that have been exposed to the hardware and done Internships and fellowships and residencies with these very specialized docs.
The guys doing the highest tech, last option surgeries don't make there bread and butter on discectomies and single level fusions. Any OS or NS that's done a felllowship in the spine can do this. We even have the catch all orthos that will do Knees, elbows, shoulders and feel they are just as capabale of doing spine surgery.
Personally If I have a spine problem I don't want an ortho that's a jack of all ortho trades, these guys are not the inovators and lifesavers that people with more extensive problems want to place their faith in. If you saw a guy that's implanted 2000 artificail discs and he says your not a candidate, his opinion would carry much more weight than the jack of all ortho surgeries.
For example, 4 years ago when I was looking for a solution to my failed long fuusion I was told by orthos that did nothing but spine work that I wasn't a candidate for any procedure they had to offer. In the last 4 months I have talked to a doc that suggested something so radical I thought I would never consider it, I had read about this procedure the day before I talked to him.
It was just dumb luck that my pm doc refereed me to an ortho he trained in pump implants that brought up this surgry. But after talking to him I left wondering if this was the answer. However he did his spine fellowship at the hospital for special surgeies in NYC, Went to med school at the Einstein university and internship at Beth Isreal.
I don't normally grant name brand schools special distinction but he's doing surgery that nobody in this area would ever consider. If another ortho from a good school says your done, there is no option, I don't take it to heart. They were not replacing entire sections of vertabrea and having patients walk out the door 5 years ago and now, if your lucky and find the right doc after a traumatic injury there are solutions other than stabalize and a wheelchair for the rest of your life. In another 5 years , who knows what will be the norm and what will be considered old.
By the way the solution to fixing a failed 6 level fusion was to extend it up 3 levels and make it a 8 level. Most orthos thats aw you need a 9 level fusion wouldn't touch you, But the instrumentation is new, the idea is new and included running a bar from hip to hip, attach to the sacrum to build a ledge or platform to be the base of the fusion and disperse the load to the hips rather than the softer bone of the sacrum. Then do a global with a combination of cages and screws and rods. This wouldn't have been an option for anyone 5-7 years ago.
5 years ago they didn't have pedicale screws with swivel heads so that no range of motion was lost, now there are 4-5 variations of the same idea all in clinical trials, they din't have the vertebral spacing device 7 years ago I have seen 3 versions in use now. It may have kept Chris Reeves out of a wheelchair if it was available then and the docs doing it were near by or heard of the accident, who knows? Years ago, crsuh injuries were amputated without a thought, now limbs are being saved
I'm trying to pass on some optimism when you have been disapointed by being denied or told IDET wasn't an answer or something insurance doesn't cover. The fact insurance won't cover it tells me something, like it's simply an intermediate fix untll they get to the fusion or other more aproved procedures. I do think fusions are overdone and alot of the research going on is alternatives to fusion, because once your fused your options are exptremely limted.
If you have a Virgin back, meaning never had surgery. You have many options. They may not be available in your home town but there are centers across the country worth traveling too to restore some quality of life.
You are also not at the end of the lne as far as pain management. Your dose is moderate, there are newer more effective and longer lasting drugs. There are also some oldies that can help in a pinch. When my legs are wobbling from the pain in my back a short course of valium has prevented my legs from folding under coming down the stairs. Some docs won't use benzo's. some will. Some docs won't do more than a 3 level fusion, some will.
Thank you for all of your comments. I'm really not depressed nor am I at the end of my rope, really. I guess the title of the post makes it seem that way, but frankly, I have a good outlook on things, a great sense of humor, and I feel strongly I have a purpose here.
I have my own business-I write 2 stock market newsletters-so I work from home and I make my own hours which really helps.
I have 2 great and talented kids. My daughter and son are both extremely talented in music. They both play keyboards, drums, guitar and bass. My son, who is 11, plays in a band that has just won a major competition and they play gigs at carnivals and parties and I think that they will get signed soon.
As for the pain, well, it is pretty much constant and is getting worse, but I have plenty to live for and I'm sure that each and every one of us has something to live for if you just sat down and gave it some thought.
I feel that I've been a bit more blessed or lucky than most because I read the stories here and while my pain might be the same or more than most,I have had caring relatives and doctors and pharmacists. Sure, there have been the odd a** or two, but for the most part, things are going fine.