Lumbar L4/L5 ADR, Lumbar L5/S1 ADR/ALIF

**Susanna** · 07-16-2010, 04:41 AM

Ok, this is just wrong. Have you looked into a trial? I also think that you need a second opinion. Not all Doctors are the same. I had a doctor in WI tell me that there was NOTHING wrong with my neck and gave me 3 injections to try and get me out of pain. By the time I got to Alaska, the neurosurgion here couldn't get me into surgery fast enough. Felt I was close to being paralized or even dead. I didn't even have a chance to look at alternative surgery's because I was in such a life threatening situation. I ended up with four fusions in my neck two days after I saw him. So go see another doctor. And see if you can get into a trial. Life does not have to be full of pain! KEEP ON FIGHTING!

Susanna

**runagain** · 07-16-2010, 06:12 AM

Susanna,

Thank you for your concern.
As I tried to point out, it is not my doctors that do NOt believe me, it is the insurance doctors.
Not to get into too many details, I was basically "told" by the insurance doc that my pain symptoms did not match what the tests showed.
Now, I believe, although I do not have written results yet, that they do.
Both my EMG and discogram show exactly what is wrong.

Susanna, unfortunately, I cannot get into a trial because I already have a disc at L4/5.

Although, I was worried about the possible ramifications of having another discogram, I knew that I needed to do this. It sucks but it was something I had to get done.
Discograms point out the problem with clarity, usually. I was basically painted into a corner and had to do something as stupid as it is.

My pain doctor is an anesthesiologist and he is not malicious. He was saying he was sorry as he got close to the nerves and when he did the pressure thing. He gave me a pretty hefty dose of pain med in recovery. I have a problem disc and it might now be what they call "chemically sensitive". You are blinded to what disc they test and such when you undergo the disco and afterward he didn't say anything like, we didn't get the pain generator, etc... I pretty much knew that we got it.

Tomorrow (later today) if I continue to have increased pain the pain meds are not touching, I will call the dcotor's office and see what they want to do.
Hopefully, it will calm down.

Geeze, I think the worse thing is when it is an emergency and you have to be rushed into surgery and you have no choice. And nothing ticks me off more than doctors not listening to their patients. It happens too often, I think. There's a book, "How Doctors Think", by Jerome Groopman, MD, that is very helpful. It talks about misdiagnosis and stuff.

I have had second, third, fourth, fifth opinions. All my doctors know I need surgery. I am just fighting to get the best surgery for me, the one, my surgeon, believes is the best. And although I want the optimal outcome, I know that I might not get it or I might have to have another type of surgery.

I was really close to getting surgery last July and then my doctor backed out. He was looking out for me, actually, not wanting to add more financial burden on us. He did not want to operate and in the event I needed another doctor--in case of an emergency-- he knew those doctors would not be as forgiving when it came to wanting their money. He also did not want his hands tied if he needed to call in a specialist.
(Insurance companies can pretty much rule doctors. And the doctors that make the decisions about approval get a lot of money to deny surgery.)

He supports me waiting for the better surgery and I am doing all I can to get insurance approval. (Including going through another dreadful discogram.)

I honestly hope that in the future, insurance companies will leave the medical decisions up to our own personal physicians. I am sick of what is going on currently.

Well, enough, of the soap box. I am glad, Susanna, that you got a doc that listened to you. A four-level cervical fusion is a lot. I hope you are dong well and are out of pain.

I am tired. SO bye. And thanks for caring.

R

**Susanna** · 07-16-2010, 05:57 PM

Well, my neck is out of pain anyway! But now we are dealing with the disk that "wasn't ready for surgery" back then and is now so bad that I can hardly stand it! I have actually switched surgeons from the one that did the first surgery because he was arrogant and had poor bedside manor. He would constantly answer his cell phone during appointments and take calls from even his maid. He always ran, literally, no exaggeration, 3 hours behind, on his appointments!. Of course this is no surprising when he spent more time on his cell phone than he did talking to his patients. Then he would have the wrong patient x-rays up in your room, they even lost my low back x-rays and had to look at them on a small computer screen, taking the x-ray techs opinion about what was wrong. THIS was enough for me to switch! But the first surgery was such an emergency and I trusted my pain neurologist that HE was able to diagnose that I was in danger that the surgeon just seconded the opinion. It seems that the best surgeons sometimes can be real jerks!

I wanted to comment on "waiting for the perfect surgery". I am not sure that there is one. My new surgeon is very Conservative. I have wanted to go full tilt and have a fusion from the beginning. And he has disagreed with this because he has always said that most disks will respond to lesser surgery's and not need fusions. So we have done the microdisectomy after trying the injections. Now while it is true that it hasn't worked for me, I am in the minority for his patients. And I am at the point that I want to do this too, because fusion is a big deal. I'm not crazy about having screws in my back, and possibly having problems with that at a later date and needing them removed. That is why I have wanted to have a TDR. But, for a L5/S1 there just hasn't been a good ADR for that that I have been able to find. Like you, my insurance denyed my ADR, and so far I haven't been able to find a trial for a L5/S1. I thought I did but then I keep getting more info from people and find that I don't qualify. I can't afford to travel to Europe and I here way too much bad stuff to even want to! My area just is not a proven success area for ADR I guess. So I am feeling like I want to take one step at a time and see what happens. I may change my mind as the surgery gets closer on AUG 30th. But right now, that's where I'm at. I tell you this because it may help you also with your insurance company too, if they see that you are doing these other procedures and they aren't helping, then they are more likely to approve the more drastic procedures. But I agree with you. Insurance company's should not be making our decisions. There is an appeal process, and perhaps you have already gone that route. Idk.

I am unable to take pain med's, so I know what it's like to be in pain 24/7. It really sucks! I will keep you in my prayers as I do everyone on this site. This is a great bunch of people, I feel very close to each of them. They are here for you and will support you, even when you are feeling low. Sometimes we complain and sometimes we cheer eachother on, but we are all here for each other!

Susanna

**runagain** · 07-17-2010, 02:57 AM

Susanna, Hi!!

I think our posts crossed in the night or something like that.
I posted on your thread and you posted on mine.
Hey, currently my L5/S1 is my problem child too.

I don't think I could go without pain meds. I tried it when i was despairing about not having surgery when i was set to have it and it did not work.

I tell you what this whole experience has totally changed my view of people taking medications for pain. I am the last person who wanted to take a schedule II opiate but that changed when nothing was working to bring down the pain and it was so great to get some relief.

I have to admit when I worked with some patients I thought some were "druggies" and some might have been doing drugs for the "high" but others weren't. I did not ever deny my patients drugs but you get a certain callous view. There were patients that watched the clock to take an as-needed (prn) drug. I always wanted my patients as pain-free as possible. There were other people I worked with that was not the case.
I also thought there was a huge chance of being addicted if you took the heavier pain meds. In my reading, I found it is around 3% for people who take the meds for pain and not recreational use.
I got off the meds after my last surgery with no problem. Just slowly came off.

I am sorry you have to be in pain but I understand that sometimes you have to forgo some medications for health reasons. Pain is so subjective, too. I mean that I can tell the difference of the pain I have now compared to the pain I had before my last surgery. They are different. It was one way that I kind of knew in the back of my head that I had
developed problems in another disc. Eventually, I learned the disc was "bad" all along and should have been fixed in that first surgery.

But my pastor in my church, gave a sermon last year about not living your life with IF only's and i try to live by that. and not engage to much in thinking about what could have been, and more reality-based on what is. There are people I would never have met if I had not had a bad boy at L5/S1.

Oh, "waiting for the perfect surgery". Oh no. There is no perfect surgery, I just want what my surgeon wants: the best surgery for my circumstances. Like he told me, the last time i spoke to him, doctors are not perfect, accidents can happen...to paraphrase. I know more than anyone that any surgery carries risk and before my first and only (so far) spinal surgery, I was given options. It wasn't considered an "emergency" surgery but after that first discogram, i was counting the date to surgery.
ADR or fusion are major surgeries and they take a toll on your body. My surgeon said in one of his appeal letters that he never takes surgery lightly.
Nobody should.

But I have said all along, the most important thing is getting the best surgeon you can get; getting the second, third and even fourth opinions and researching. Basically, taking responsibility of knowing about what you need to know so you can get an optimal outcome.

I am a little confused. Are you living in a different state now? Like I said, my friend could probably help you if you are in WIsconsin (the cheese state), if that is what you want.

You know when I am in operating in my "sane-mode", I try to consider this like a journey, yes this is a bad time for me but this is just one part of my life. Other times, I am just angry and mad, but yes, people on here and other places have helped me so much. You can come on here and speak candidly and people can relate. It helps you to get through this place in time. It helps you to get things "off your chest".

I just "lose it" occasionally, I will admit. This is hard, it is not easy. It has been one-year since my surgery was scheduled and to be honest, I never thought I could make it this far without surgery. But I have. And I have not done it alone. Having an experienced, knowledgeable and talented pain doctor really helps. I thought at first it might be restrictive but I see him once a month, usually, and he takes care of me. It has been frustrating at times, like now, having to do a discogram to "prove" myself to an insurance doc. Most of the time, him and his PA (physician assistant) are receptive to what I say. Heck, I would not have any just "Joe Blow" putting spinal needles in my back.
You have to be able to trust your doc.

I have accepted that I am a chronic pain patient and I might soon be out of pain, but i am still chronic. When I first started feeling the really bad pain, people spoke to me about having chronic pain, and I was, "Hey, no way. I have only had this really severe pain for a few months". However, I had some lower-level pain for years. I was in denial for years, I thought I had muscle problems. Boy.

Regarding ADR, I can speak a little on it since I have one sitting in my spine right now. Hey, i like them. i know some people have had problems but people also have problems with fusion. That is why it comes down to getting the best you know what surgeon around.
Mine is a ProDisc. I expect to have it forever and I feel a little bionic with it. Surgery was hard, recovery was hard and life would be good except for the "other" disc. I knew nothing about ADR before the severe back pain. I researched about everything. I spoke to people who had one, etc...i shifted though misinformation. it was a good fit for me.

The next disc in my back will be a ProDisc, unless my surgeon has found a better model and wants to do something else. I don't get why you say that you can not find a disc for L5/S1. There are a lot of people around here walking around with ProDiscs, Mavericks, Active-L's and Freedom's, etc..at their L5/S1 discs . There are a lot of successful people. The discs can sometimes cause increased facet degeneration, but that can be corrected with a posterior fusion. And there is no predictor of if that will happen. I had my facets checked and they are fine.

If you can, I would try getting into a trial as long as you don't have any contraindications for ADR like facet degeneration that is too severe, osteoporosis, too-old, and so on. Like i said, K-Bear threw out all the stops and found a trial. Unless you have an emergency, you can take your time and do what is right for you. Not everyone can have an ADR. People have gotten in major trouble because they should not have ADR and a surgeon implanted one despite the contraindications.

But first see if your surgery on Aug. 30 works. I advocate doing the more minimal surgery first. No, don't go rushing to fusion or any other major spine surgery. you have time.
I figure your spine is on the line, you better get the best surgery for you. There are many types of fusions and you might be a candidate for one and not the other. Maybe you won't need fusion and that would be great.

For instance, if I was not getting ADR, I would get an ALIF (anterior lumbar interbody fusion). It is the same approach as ADR and is very similar. You might find also, that some surgeons only do posterior fusions and that is their "cup of tea" and they do that approach and nothing else.
Sometimes your anatomy precludes you from having a certain type of fusion.

My advice is be sure what you are doing is the best thing for you. And there are money constraints, travel restrictions, etc...In my case, it has mainly been insurance road blocks.

Yes, I have been through appeals. You do not know the half of it. Now, I am going though stuff with this other ins. co. You may know that in 2014, we can choose an insurance without worrying about pre-existing conditions. And for those who have been turned down for insurance because of being "major risk", etc.., they can now get insurance through the federal government. Just read this today, although i knew it was coming, and it is "about half" of what they may normally pay for major risk insurance because it is subsidized by the government. Now, people who have gone without can get insurance if they want to.

Well, hubby is home and we have just gone through a "clearing out" talk although I feel pretty (physically) bad still. He just asked me what his priorities are and I said, his work at home, the kids, eating, and then me. And I go lie down and he says, and you certainly are not a priority. That got me off the bed and I started complaining and he said, "You are so easy."
Teasing me. I totally fell into it. Hook, line and sinker.

Living with someone with chronic pain is tough and it is hard on our marriage. I find he does not completely understand what I am going through. It is just tough.
How are you handling it in your situation? I mean there is no handbook on how to handle this.

runagain

**Justin** · 07-17-2010, 10:25 AM

Originally Posted by runagain

Justin, if you are around, I'd like to send you something. I sent you a PM a couple weeks ago and did not get a reply so I don't know if this PM thingy is having trouble or not.

I hope tomorrow is better.

Runagain

Runagain, I got your email...we should talk soon.

**runagain** · 07-17-2010, 04:09 PM

Yes,
Justin we should talk.
It has been a while.

R

ps my hubby went to get a hair-cut, do errands this am. and then just came home and went off to the park with 3 of my kids to celebrate a neighbors' son's 1st b-day. When he gets back, he has promised to help me with e-mail He has been razzing me about not knowing enough about computers. Geez.

**runagain** · 07-21-2010, 05:10 AM

Well, today was a surreal experience as I spent the day in the hospital.
But I wasn't the patient for a change.

My husband got a little taste of hospital when I decided that after trying to get a doctor to see him that we weren't taking any chances and we went to the ER.
It turned out to be a wise choice after he has been experiencing some chest tightness and "fluttering".

Turns out he has some leakage in one of his heart valves and although it is a minor leakage, he needs to watch it so his valve lasts. He was scared to go to the hospital although he has been there plenty of times with me.
I am relieved we know what was causing his symptoms and he is under care of a doctor.

I am greatly relieved he did not have a heart attack or anything of that sort.
He almost never complains and rarely asks to go to the doctor so when he told us about his symptoms on Sunday, I was concerned.
He talked about being under a lot of stress with work, home and my problems but he is in pretty good shape as the tables have been turned as I used to be the one that was in excellent shape. No longer. He is the trim and healthy looking one but we are now in our 40's and I take things about his health a little more serious. (I remember being in our 20's and we didn't think of heart attacks then but now we do).

Well, I thought I would take him to my cardiologist whom I go to for my high blood pressure and chest pain, which all started coincidentally when my back problems became severe.
He did not want to see him until he saw an internist (which was understandable) and I tried Monday and part of Tuesday trying to get into a doctor and they could not fit him in.
I was quite incensed because I knew my husband's problem was something that needed to be checked out and I did not want him going back to work until a doctor did. My doctor even had his office call around to try to get an appointment with an internist. One internist office called me back this morning and they could not fit him in until Wednesday and I explained that my husband needed to be seen today as he had already waited a day. That you don't fool around with heart problems but she just said that they were booked.

So then I tired to get a hold of my primary doctor and he was on vacation and for some other reason the other doctors in the practice either were not in or were not available.

I had been told my heart doctor was on call at the hospital so I called his office back and said, "I did not want to have my husband slumped over the wheel on the way to work and so I was taking him to the ER".

We went to the ER--although he drove because I have been taking an increased dose of pain meds after my procedure last week. We were there for about six hours. Nothing showed what was up with him until he saw my cardiologist who gave him an echocardigram (picture of the heart) and a stress test (on a treadmill).

He is going to have to take a blood pressure medicine--called an ACE (angiotensin converting enzyme) inhibitor and is prescribed another bp med called a beta-blocker for his rapid heart rate (the fluttering). At first he was not too keen about taking a medication as he does not take any. But our oldest daughter told him that she needed him and he had no choice but to take the medication. The ace-inhibitor will reduce the resistance on the valve.

I take the same medication for hypertension so it will be his and her matching medicines.

I am real happy we escaped the hospital and he couldn't get out of there fast enough (Ha Ha). It seemed to be a wake up call for him as he talked about exercising more, eating more veggies and so forth. He already does that but I guess lately he wasn't.

I was just really pissed off about the doctor situation but glad I did not let that stop me from getting care for him. I knew enough about heart problems that i was concerned about his symptoms. I wonder how many people do not get urgent care because a doctor's office does not have room for them. From where I come from, a cardiac event is an urgent or emergent thing. You don't ***** foot around when you suspect you are having heart problems.

I always tell people if someone has chest pain, call 911 and do not drive them to the hospital. He didn't have "real" chest pain and appeared stable so we drove. Sometimes he complains that I overreact but my training told me that despite the inconvenience the ER was the way to go today ("one-stop shopping" so to say).

By the time we were done in the ER, my back was killing me despite pain pills but there was no way I was not going to be with him today.

He is sleeping now--soundly and I am relieved and even his snoring does not bother me tonight.

Please watch over your loved ones.

Runagain

**Cindylou** · 07-21-2010, 07:50 AM

Wow, big scare runagain. Glad you guys went to the ER. That's what it's for when someone needs to be seen "now" with a scare like that. So kudos to you for taking his symptoms seriously and getting him seen fast. Maybe this experience will give him just a tiny pin hole view into what you have been dealing with for so long. It is so hard on our spouses, especially if they haven't experienced any major pain or health problems. I get frustrated too. I rarely tell my husband I am in pain anymore unless it is a really bad day, and when he asks "why" am I in pain so bad today I just want to slug him. Anyway, hope he gets to feeling better and thanks for sharing your story runagain.

**ajj1001** · 07-21-2010, 08:36 AM

...just to let you know if he does need a replacement heart valve he can be good as new afterwards. hubbie had one five years ago and is far better than he was before. he cycles, swims, runs and looks after me no problems.