New here - Introduction

[treefrog]

Well, I followed others over here from the other place, although I had only been there for about a month. I believe you can never belong to too many forums. I hope that I can learn from those here, and contribute where I can. I was most impressed by the articles and abstracts section, as I am a scientist. I have already found several good articles.

An introduction.
My name is Cathy, and I’m 46 years old. I have hereditary lumbar DDD. I say that because both my mother and sister also have lower back problems. I always considered myself the lucky one, since I had never had an episode of acute back pain that kept me off my feet, whereas they both have. My pain has always been intermittent, coming and going since about 1993 or so (I can’t remember exactly the date when I first had pain while shoveling snow), but I have always been able to get around and take care of myself during the pain. But about two years ago the pain started again, and it hasn’t let up.

MRI results (Dec 2007):
-Transitional anatomy – S1 is partially lumbarized (meaning it isn’t fully fused).
- Minimal levoconvex curvature, apex to the left at the L5 level. Both alignment and height of the lumbar vertebrae is well maintained.
- L1-2, L2-3, L3-4 Normal disc contour, without canal, lateral recess, nor foraminal stenosis.
- L4-5 Mild-moderate disc degeneration with desiccation and slight height loss. Mixed fatty and edematous degenerative endplate change is present, most advanced to the right of midline. There is mild endplate osteophytic ridging, accompanying dorsal disc bulging, eccentric to the right. This leads to very minimal flattening of the right ventral thecal sac. No canal or lateral recess stenosis. There is mild right foraminal narrowing due to lateral component of disc bulge, as well as very mild lateral endplate osteophytic ridging.
- L5-S1 Mild disc degeneration with dessication. Mild-moderate degenerative facet changes are present bilaterally. Minimal dorsal disc bulge, without mass effect upon the thecal sac, No canal or lateral recess stenosis. Mild left foraminal narrowing due to facet hypertrophy and endplate ridging.

Discogram results (Dec 2008):
- L2-3 disc injected with 1 cc shows an opening pressure of 26 psi. Normal anatomy. No pain. Max psi is 88.
- L3-4 disc injected with 1 cc shows an opening pressure of 23 psi. Normal anatomy. Some end-of-injection right anterior thigh pain. Low intensity. Repeat injection with 1 cc reproduces no pain. Max psi is 120.
- L4-5 disc injected with 2 cc shows an opening pressure of less than 10. Diffuse degenerative anatomy. Early injection concordant right-sided hip and leg pain. 7/10 intensity that increases with increased pressure. Some pain with needle movement. Peak psi 60.
- L5-S1 disc injected with 3 cc shows an opening pressure of 12. Diffuse degenerative anatomy. Early to mid-injection concordant back and hip pain. 8 to 9/10 intensity that increases with increased pressure. Max psi 54.

Pain medications:
Darvocet – didn’t do anything for the pain.
Ultram-ER – made me sick, dizzy and gave me headaches, didn’t help the pain.
Vicodin – didn’t help the pain, and at higher doses made me “out of it” and affected my eyesight.
Fentanyl – made me extremely sick.
Percocet – helped the pain a little bit, but at higher doses made me dizzy and nauseated.
Opana-ER – helps with the pain, no side effects. Currently taking 20mg twice a day.

Other meds:
Relafen – might have helped some, but it was hard to tell.
Mobic – might help, again hard to tell. Currently taking 7.5 mg once a day.
Neurontin – helps some with the nerve pain, but doesn’t get rid of it altogether. Currently taking 300 mg; two pills at night, 1 pill in the morning and afternoon (1200 mg total).

Talked with an orthopedic surgeon after having the discogram. He recommends either a 2 level fusion (minimally invasive TLIF), or a Prodisc-L at L4/5 with fusion at L5/S1 (ALIF).

Hopefully I will be having a second opinion with a neurosurgeon. I’ve been faxing them all kinds of information, which is fine, I understand that he wants to review all my test results before forming an opinion. The only thing that bugged me is that he wanted the surgeons notes from the consultation, and I want an independent opinion. But, we’ll see what happens.

I have a fantastic PM doctor. She listens, doesn’t give me a hard time about meds, probably because I’ve always been honest with her.

[treefrog]

Oh, I forgot to mention all the treatment I've gone through, so here's that.

PT - stretching, massage and ultrasound all felt good, but when I would try to do strengthening exercises I would have more pain. None of the PT helped reduce my pain.

ESI's - have had three, each only gave me limited reduction in pain, which only lasted about a week each time.

Facet injection, and block - nothing.

Acupuncture - nothing.

I have lower back pain, more pronounced on the right. I have pain that goes into my right hip and into the front of my thigh down toward the inside of my knee, this seems to be more controlled since starting on the Opana. Occasionally I have had pain that goes into my butt, both sides. And since the discogram I now have slight numbness and sort of a tingly feeling, in both lower legs and heels, more on the right than left. In fact this morning was the first time that pain abruptly awoke me from sleep (though pain in general seems to keep me from sleeping well), and it was pain in my right heel. I was able to move positions and the pain abated.

And this past week or so I've begun to feel a stretching, pulling like pain farther up on my back (still lower back though), when I bear down in the bathroom or if I lean forward.

[Justin]

Welcome Treefrog! I didn't read your post, but I wanted to drop in and say hi. I gotta run...

[New-disc]

Treefrog,

Hello.... what do you study as a scientist?

Todd

[treefrog]

Currently I work in a lab at Duke University that researches prostate cancer. My boss (PI or primary investigator) is an MD, so some of our work involves clinical trials. I have a MS in biotechnology, and I have worked in several different areas of biological science.

Because of my back, I'm not able to do the actual experimental work any more, so I am doing lab management. Unfortunately my boss really needs me to be able to do more than I am currently doing. Another lab member is leaving in July (hopefully for med school), and when he leaves someone will have to take over his duties. He has been doing most of the tissue collection (biopsies for the clinical trials), and the follow-up processing of the tissues. In one of the trials, the tissue processing is going to have to be done immediately, because patient treatment is going to depend on the results. Which means several days of intense, full days of work.

This is a big dilemma for me. If I don't have surgery, physically I can't do the work. If I do have surgery, will I be back in time to take over.

[New-disc]

Treefrog,

I sounds like your walking that fine line most of us spine people walk.

Always seems like we're giving something up to get something done.

Take care of what you need fixed first .... then you will be able to help those that are in need around you.

I have a 7yr old that watched me for a long time crawl up the steps to put her to bed.

Post-surgery...

(I'm now able to help her in so many new ways)

Todd

[Justin]

Hi Cathy,

It's great to hear you have a good PM doc. I also have a lumbosacral transitional vertebrae. How many other surgical opinions are you planning on getting (you mention one other neurosurgeon)? Just taking a glance at your background info, it looks like you have 3 bad levels? (Is this right? I've been studying all day, so I'm in a haze.)

Interesting you mention prostate cancer research. My wife did prostate cancer research for 3 years and published 2 first author publications from her time in the lab. Duke's a great university and I'm sure your research is quite brilliant.

Well, keep us posted on your appts and how things are panning out.

[treefrog]

Originally Posted by Dr. J

Hi Cathy,

It's great to hear you have a good PM doc. I also have a lumbosacral transitional vertebrae. How many other surgical opinions are you planning on getting (you mention one other neurosurgeon)? Just taking a glance at your background info, it looks like you have 3 bad levels? (Is this right? I've been studying all day, so I'm in a haze.)

Yes, my S1 is partially lumbarized. And I've been wondering if that might have in some way contributed to my condition, having some movement where there shouldn't be. And I wonder if my mom or sister have the same anatomy, the scientist in me wants to know, but neither of them has had mri's.

It is 2 bad levels, L5-S1 and L4-5, though after reading the discogram results I don't know if I should be worried about L3-4 going. Which has me leaning toward ADR at L4-5 and fusion at L5-S1.

I'm not sure about getting other opinions, at first I didn't think it was necessary to get a second opinion, but some of the docs in the lab convinced me it would be a good idea.

Well, keep us posted on your appts and how things are panning out.

Will do. Thanks.

[Kathy]

Originally Posted by treefrog

I'm not sure about getting other opinions, at first I didn't think it was necessary to get a second opinion, but some of the docs in the lab convinced me it would be a good idea.

I would definitely at the minimum, get a second opinion. I would do research on here and the internet and find the best ADR and fusion dr you can and see them. When it comes to a surgery like this, you need to make sure you do everything you can for a positive outcome, including research. I figure, at least that way, you know you have done everything possible to make the best decision you can. From what I understand, the surgeon is one of the most important factors to a successful outcome. Also, you want to make sure you are a good canidate and have the right surgery. Just my opinion, hope it helps.... I'll get off the soapbox now, Kathy

[treefrog]

Kathy, that's one of the reasons I am on places like this, because I want to find out everything I can about making the best decision.

I will be getting a 2nd opinion, but I don't have plans at present for a 3rd opinion. Not that I won't want to get one, but it will depend on what I find out from the 2nd opinion, and questions I have for the 1st surgeon I talked to.

So, here are the surgeons I've seen (or will be seeing).

Dr. David Musante (Triangle Orthopaedics) Triangle Orthopaedic Associates, P.A.

Dr. Robert Isaacs (Duke Spine Center) Isaacs, Robert E. - DukeHealth.org

I am in the Raleigh/Durham NC area. So if anyone knows of the best surgeon to see in this area, I would be appreciative. Or if you think I should go somewhere else. Though, with Duke here, I would hope there would be an excellent surgeon here.

And I'm pretty sure that Dr. Musante has a lot of experience, I found his name associated with some clinical trials (though right now I'm blanking on which ones specifically). And that is one of the questions I want to ask him, is how many TDR surgeries he's done in his career, and on average, each year.

[Kathy]

I am not that familiar with surgeons in the US, other than the one's mentioned often on here... I think the one's I have heard of are in California and Texas. And of course, the one's in Germany we hear about all the time. I hope if I didn't come off as judgemental and mean in my previous post... that was not my intention. I just wanted to help.
Hopefully someone in your area can tell you more about surgeons around.
Good Luck in making your decision,
Kathy

[treefrog]

Kathy, I didn't take anything you said as anything other than suggestions to help. No problem.

I just wanted to bring up where I was coming from, and what I was thinking, in relation to your suggestions. Sorry, if I sounded like I was being defensive. I just wanted to clarify my position. And took the opportunity to list the surgeons that I am interacting with right now.

And I guess I am also trying to figure out what I should be doing. Should I think about going somewhere else for surgery? Out of the state, out of the country. Could I get insurance to pay for surgery out of my area?

And actually I am still trying to decide if it is even time for me to have surgery. I hate that I can't do the things I want to do, or even need to do, at times. For instance, over the weekend, I was standing a lot while cooking. It has been a long time since I have done this, because it is so hard on me. And my back is paying for it. I hate that I can't cook, like I want to be able to do.

But is surgery the right choice, right now? I have had people tell me that they would not consider surgery if they were in my position. Because I don't have nerve impingement or spine instability, that surgery is not "required". My pain levels don't typically exceed a 4 on a scale of 10. Though my pain keeps me from living a full life. The thought of feeling like this for years to come is depressing. I want it to get better.

If I don't have surgery, my life is not likely to get much better, but it may stay the same. That thought makes me want to cry though. It's like I almost wish that my problems were more severe, so that the decision would be more clear cut.

This is major, major surgery, and the outcome is not guaranteed to go in my favor. The odds are not overwhelming, the one surgeon I talked to, said 70%-80% chance that pain that is an 8 starting out which ends up at 2.5-3, would be a success. Well, if my pain is starting out at 2.5-3 (with meds), what can I expect, and why am I even considering such major surgery.

Sorry, my post just deteriorated into whining and navel gazing. I think I am just looking for validation of my feelings. I think I need to read some of the surgery outcomes, and see if there are people who have had surgery, that started out like me (though I expect most were in worse shape).

[dshobbies]

Treefrog,

I felt and advised both Maria and Mark to have surgery but they both came back with a quality of life issue. The biggest concern about surgery is there's no going back. While a poor outcome may become better with time or additonal surgery, it also may not. We all have our hopes and desires for a better life but for some, their hopes are never realized. You've read about the 'miracles' of people getting their lives back and going on to lead lives close to the that which they remember. That's what we all want.

I posted a question on ADRsupport, for those considering their surgeries successful, what can't you do?. I was surprised that with one exception, everyone posted some limitations. Personally, I've been left with severe nerve damage in my left leg that causes it's own limitations. I am considered disabled. I cannot stand for a long time, sitting can be difficult if the chair doesn't fit and I still spend a lot of time in my lazyboy. However, I can cook dinner, eat at the table with my family, pick up and play with my grandchildren, paint again, go out with friends and ugh, do laundry. My life is so much better since my surgery that even with my new limitations, I consider my surgery a success. My quality of life has been greatly improved.

So getting back to Maria and Mark... are you satisfied with your quality of life? It is different for everyone and no one has the right to tell you to be satisfied with your pain level because it isn't severe. Does your pain limit your activity level to the point that you're unhappy? That's when you know that you want to do something to improve the quality of your life, or at least attempt to improve it.

Life comes with no guarantees and neither does surgery but sometimes, if you don't go for it, all you get in return is regrets. Should you decide that surgery is in your best interest, please be reasonable about your expectations. Most of us are left with some limitations. 100% has a new meaning. And don't worry about ranting, we've all shared your feelings and putting them into words, trying to make others understand, is difficult.

I wish you good luck, Dale

[mmglobal]

Today, I'm unhappy that I canceled my surgery... It's been a very tough week and I could be on the road to recovery next week. Hopefully, in a few days, I'll be happier with my decision.

[Kathy]

Cathy,
I have to agree with Dale. I always say I never knew back pain until I had back pain. Before my injury, I just thought I had pain. What I would have said was a 5 or 6 then, would be a 1 today, a great day. People who have never suffered from pain, don't get it. It wears you out to be in pain constantly, whether a 4 or a 9, day in and day out, . It is physically, mentally and emotionally taxing. Then, to try and make a life altering decision, that could be the best thing you've ever done, or the beginning of the end; is almost impossible. Even with the pain and limitations I deal with, the dr's saying I will not get better without surgery, and time I have been suffering; I still have family that doesn't understand why I can't deal with it *like they do*. The difference is, their pain is what most of us would consider a great day and is intermittent. They have probably never laid, cried and prayed for death over their pain. They don't get it and they are not us. Only us and those few compassionate friends see what we go through. Not to mention, I don't want to have to take pills to function for the rest of my life. To have to make sure I don't leave the house without my medication, to not commit to anything *just in case I am having a bad day*, to have to back out of commitments because of pain, to live like a hermit in order to be as comfortable as possible, to tell my kids that mommy can't hold you- her back hurts, to have an hour or two window of pain relief between pills, not be able to be spontaneous and live a 'not really living, just existing life- if you can even call it that'. No one can judge that, they haven't walked in our shoes. God gave us life and gave it to us abundantly, not mediocre life; but abundant. I feel it is my duty to myself and my children to do everything I humanily can to get better. Yeah, I could live with this the rest of my life, it's not going to kill me, it's not life threatening; but I want and need a better quality of life. It really is a quality of life decision for most of us, very few is it truly life threatening, obviously not good for the body; but not going to literally kill you. It's just like the decision to have drugs in childbirth or not, it is your body and your decision. No one would look badly on someone who was in labor for 3 days and had drugs. Why would someone judge someone who is in pain 24/7/365 for wanting help. I, personally, would rather have 24 hours of drug free intense childbirth once a month (which I have done), than to be in pain all day. At least with childbirth, their is an end to it and a really great reward!
So, my point is, if this is effecting you mentally, emotionally, physically and interfering with your life; then why should you suffer. You have to do what's best for YOUR body and only you can make that decision. Just smile and say 'oh, yeah, uh-huh, etc' when people give you BS advice and then do what you want to do.
Ok, I'm rambling and on my soapbox again, can you tell I'm passionate about this? He He. Best of Luck in making a decision that you can live with. Kathy

[New-disc]

Kathy,

Well said .... many things you talk about ring so true.

Thanks for the post...

Todd

[treefrog]

Wow, thank you guys so much for being so understanding. It is about quality of life. I think you expressed it so well Kathy, never being able to commit to activities, because you don't know how you will feel. And being a slave to pills and the clock. Opana-ER is supposed to be taken on an empty stomach, so there is a three hour window, twice a day, in which I cannot eat (for me that is 4-7, as I take my pills at 6, both am and pm), not conducive to spontaneity, or parties.

It has been such a long time since I have been able to go out to a movie, because it is too uncomfortable. My boyfriend took me out to a really nice restaurant for my birthday (in Nov), one that I had wanted to go to for a very long time, and although it was a very nice dinner it was marred by my significant pain level that evening. I was very disappointed that I could not enjoy it more. My job performance is also affected, I cannot do all the things that I should be doing. Maybe that means I should look for a different job, but that seems unreasonable to me. I don't even know what kind of job I could do at this point, and can't imagine interviewing with my brain muddled by drugs.

I feel almost paralyzed in making a decision. Sometimes I am certain that I want to try surgery, then other times I think I should wait until it gets unbearable. My pain level most days now are about a 2-3 out of 10, with medication. It is a real improvement over the 4-5 I had several months ago, before finding a medication that worked. And when I think back to a year ago (without meds) when I might have described my pain as 4 or 5 then, I would now say was about 2 or 3. My perception of pain has changed, that's for sure.

I do think I have a reasonable expectation of surgery. Knowing that I may still have limitations. But if I were able to get back down to a pain level of 2, without drugs, I would call that success. If I were able to stand for half an hour without ending up with increased pain, I would call that success. If I could stretch and bend without increased pain, I would call that success. And so on.

I just got finished reading Diane's surgery blog, which has me leaning toward surgery at the moment. Part of me thinks that I have a better chance at a better outcome if I have surgery sooner rather than later. The longer I am in pain, and limiting movement, the more out of shape I am bound to get.

Thanks again, all of you.

[SandyW]

My thoughts when I read your thread. I'm NOT a doctor, nurse, or anyone in the medical profession, these are my thoughts.

1) Can you afford to pay for surgery yourself? I feel that the best and most experienced is Dr. Bertagnoli, Germany, also Zeegers in Munich. If your insurance won't pay, it's cheaper in most cases to go abroad. You could have Mark send your film to Dr. B for a 2nd opinion, the cost is minimal compared to peace of mind.

2) If you wait until you have no choice, there may be something much better - Fibrin for example or there may be better ADR's. Do you want to be in a clinical study, it's free, but the doctors are learning? When the better choice is FDA approved, will insurance cover it?

3) If you wait until there's no choice, will your chances of being pain free be higher?

4) Are you willing to tolerate more pain and the inconveniences it presents?

5) There are several good doctors here. ADR and fusion seems to work on the two levels that you need. Most ?? insurance will pay for 1 level fusion and 1 level ADR.

Like everyone is saying, so many decisions. I didn't have as many choices. When my MRI showed bulging disc's the only thing available was fusion. No one was doing 4 level ADR's in 2004. I waited until the last MRI showed disc's were impinging on spinal cord and had to choose between fusion here and ADR in Germany. I could have waited a little longer possibly, but I had to weigh bone density. At my age that could have meant a poor result with fusion or being turned down for ADR. So with the help of other cervies, I chose Dr. Bertagnoli, better and cheaper, oh and the only one at the time doing 4 C's I think. So my decision was much easier.

Pain is hard to compare, but the one thing that is difficult is the constant pain.

What I have experienced (and believe this is what most people feel) 2-5 pain is quite manageable - take some ibuphrofen and in hours or a day the pain is gone, no problem. 6-10 pain - toothache, broken bone, surgery, childbirth, nasty - take opiates for a short time, pain doesn't last long.

Most people with back/neck pain are in constant pain, high to low, even with opiates. That is what others don't understand, constant pain is debilitating and depressing. Surgery doesn't always mean pain free. I don't envy anyone trying to make these decisions today. May God and fellow spiney's and research and more research help you with your decision.

Best wishes, Sandy Wade

[Terry Allen Blackburn]

There comes that point for everyone that has been from pain to suffering and you stand at the crossroads. Pain is mandatory in life while suffering is optional. I got to the point where I prayed to die as my life has been fulfilling and I was ready to go. I walked with a cane for about a year and was hunched over like a little old man. My Board of Directors even kicked me out of my place of employment until I got fixed. They wanted the OLD ME back. The only way I was going to get ME back was to get repaired. I am over two years out of four level ADR surgery and feel glad about living again.

No matter what you decide, we will support you in the process.

Terry Newton

[Kathy]

A few more things. In your last post, you say you take your pills twice a day. What would your pain be without those pills? What if you are one of the unfortunate one's that this does turn out to be life or death? Then, you are rushed to an ER with more problems, someone you have never met does what they think is best to save your life? Then, if you even get out of pain, you have a host of new problems? When is the pain too bad? What if you wait and ADR is approved and common in the US and are ready to commit; but something new is on the horizon? Do you keep waiting? Because there will always be improvements in medicine, ADR very well could be a dinosaur in 10 years, we have no way of knowing. I think we make the best decision with the knowledge we have. Also, did you read in the abstract section the study that shows that living with DDD can lead to more discs with DDD? I know that my body is in worse shape overall from 3 years of pain; from being tensed up, to not moving as much and so on. I wish I would have been more in control of my care and done surgery sooner, I could be better by now. I have read of people of being in pain for 6 months and having surgery and are glad they did. I think once you have tried conservative methods and they haven't worked, then it is time to look at surgery or live in pain forever. How about writing a list of pros and cons on surgery or not? Another warning... I thought I was bad of, until one day my last dr. informed me that there was nothing else they could do for me and would not see me just for pain. I found myself taking 8 to 10 Vicodin a day, and hoping for death, then needing to find a dr. I called everyone in the phone book and repeatedly got turned down, since I had exhausted all conservative treatment, they wouldn't treat just pain. I had a week of medicine and needed to get in asap. I finally found one, who would treat me. Even then, he barely changed my meds, I am still suffering and undertreated. He even said that at some point, the medicine won't work, so what then? I have been there 6 months now, taken random drug tests, and he still is unwilling to change my medication. I feel if I don't get surgery, the suffering is only going to get worse. In the beginning, my dr's were more than willing to treat my pain. It wasn't a big deal to get it upped when needed; but as I got into big doses and stronger medication, that changed. With all the addiction, medication abuse, dr's loosing their licenses and scrutiny; I can't really blame them. I know I am not the only one this has ever happened to. I have read that pain is the most undertreated things in medicine.
There I went again, on the soapbox, oops, I really try not to be so dang winded, be glad you aren't stuck in a room with me

[treefrog]

Well, I do believe that surgery is what I want (need) to do. There is no other course, except to live with it. I don't believe that is a reasonable choice. And I feel like my back is getting worse, over the two years that I have been dealing with the constant pain, and particularly in the last few months.

Pain management is one thing I am very concerned about. Mostly because I have had an extremely hard time finding drugs that work for me, and don't give me unacceptable side effects (make me sick). If my pain gets much worse, will Opana be able to keep up with it. Where would I be then, without adequate pain medication. I know it might be difficult after surgery as well, but hopefully it would be short term where I would need stronger meds that would make me sick. And I hope the sickness could be controlled with other drugs. My PM doctor did assure me that they would continue to see me, even if I didn't have surgery, and would also handle my pain management after surgery (since she and the surgeon work in the same practice).

I hadn't seen the specific article you mentioned, but I will have to go search for it. I did find a good number of articles here, and I am in the process of reading them. If not having surgery might lead to further deterioration, as apposed to stopping or slowing progression with surgery, then that is a clear reason for me to proceed sooner.

All that said---Yes I do think surgery is my best option.

The question then becomes which surgery to have, when, and who (where). I believe that my surgeon is good, but now I am wondering if making sure I go to the absolute best surgeon is in my best interest. I mean, I'm sure it is, but I have to weigh the difference in care relative to the cost.

I don't necessarily think that two level ADR will benefit me any more than the hybrid, since the fusion is at the L5-S1. The only exception to that, is recovery. I have heard that recovery can be easier and quicker with ADR compared to fusion. If I thought strongly enough that two level ADR is worth it, then the question becomes can I have it here in the US, can I get insurance to pay, or can I afford to go to Germany?

So, I guess I should do more homework. I just don't really know where to begin. It is taking a really long time just trying to get a second opinion, it's been at least three weeks since I first contacted the Duke surgeons office (Dr. Robert Isaacs).

Does anyone know of excellent spine surgeons at Duke University Hospital? Because that is where I am. I am actually extremely surprised that I haven't seen mention of Duke in all the discussions of good surgeons. The other place that I could easily go is Johns Hopkins, as I have family living close by (I used to live there), and could go there after surgery to recover.

The one surgeon that I have already seen (Dr. David B. Musante), was trained at The Texas Back Institute. I think that must count for something.

[treefrog]

I will finally be having my second opinion, with the neurosurgeon at Duke, Dr. Robert Isaacs. I had a message on my answering machine when I got home Friday. Of course it was too late to make an appointment. I will call tomorrow morning.

I hope I get some answers that help alleviate some of the fear I have. I am scared to do nothing, but also scared of having surgery. How do I choose which surgery to have and which surgeon to do it? And what if I have a bad outcome, what then?

[Kathy]

All you can do is see the best dr's, do all your 'homework' (aka. research), weigh the pros and cons and make the best decision you can with the information that you have. That way, regardless of the surgery outcome, you know that you did everything you could to get the best possible outcome you can. I know it is a hard decision to make, I'm there too. You can make the right choice for you.
Best Wishes,
Kathy

Originally Posted by treefrog

I will finally be having my second opinion, with the neurosurgeon at Duke, Dr. Robert Isaacs. I had a message on my answering machine when I got home Friday. Of course it was too late to make an appointment. I will call tomorrow morning.

I hope I get some answers that help alleviate some of the fear I have. I am scared to do nothing, but also scared of having surgery. How do I choose which surgery to have and which surgeon to do it? And what if I have a bad outcome, what then?

[runner]

TreeFrog,

I was just reading your thread.
Back pain may not be life-threatening, per say, but if you cannot exercise, have high pain levels and have stress along with that, that is not good for you. It is all relative. You do really have to look at what your pain level is without medication.

Pain is also subjective, so your 5/10 may be another person's 8/10. It does boil down to quality of life.

One of the things you may want to ask the surgeons is how degenerative your discs are. I notice on the MRI a year ago??? that you have endplate changes at L4/5. Degenerative discs can self fuse, going bone to bone, and when they do, it doesn't sound like something you want to have happen.
Maybe, I would ask the doctor to have you get another MRI and compare the two and see if there are any changes since the last one.
I would definitely go in with a list of questions and they should answer them. If you can, I would try to get a third-opinion as you will learn more about your options speaking to more doctors.
If you can go to a John Hopkins neurosurgeon, you might want to try that. It is up to you.

Even ask the surgeons their percentage of success with different surgeries.

I wish you good luck and I hope you find a surgeon that is the right fit.

[treefrog]

Thanks so much runner, it is fitting advice. And I do think I should get a third opinion.

I have my appointment for a second opinion, this Wednesday. He does want another x-ray, which will be done just before I see him. But, I might ask either him, the other surgeon, or my PM doc to have another MRI done. I do think that is a really good idea, to see what kind of changes have happened over the last year. I too was worried about the endplate changes, as I think that might be something that might affect the ability to have ADR surgery done. The first surgeon said that the changes that would affect my ability to have ADR surgery wouldn't happen for more than a year, but I am still worried about it. How can he make that judgement when the MRI has only been done once. The only comparison would be between the MRI done in 12/07 and the x-ray and CT-scan done 12/08 after the discogram. I don't know how well those tests can be correlated.

So, can I get some names of surgeons that you guys think are excellent spine surgeons? Preferably on the East Coast.

I have heard the following names Dr. Yue, Dr. Delamarter, Dr. Zeeger, and Dr. Bertagnoli. I know Dr. B is in Germany, where are these others located?

If anyone has taken the time to look at the profiles of the first surgeon I saw (Dr. David B. Musante - link is in one of my first posts in this thread), I would love your opinion. I know it would only be based on his resume. I felt very good about him when he talked to me, but I'm not sure that he is one of the best. And after reading some things here, I am worried about his plan to use BMP in the cage, at the fusion of L5-S1, when I would have an ADR right above it. I haven't talked to him about this, because when I first asked, I was under the impression that using BMP was a good idea. And of course there are more questions I have for him, before I would decide on having him do the surgery.

[treefrog]

And I am thinking about giving another try to reducing my pain meds, to see where I stand. I think I should try to do this sometime soon. I have to do it slowly though.

I am wondering if it would be a good idea to consult with Dr. Bertagnoli. I have read a lot of good things about him, and the outcome of his patients, for the most part. I wish the value of the US dollar weren't so low right now.

[SandyW]

Cathy,

Dr. Yue is at Yale. Trying to think, but somebody just had surgery in New York City. Delamarter is in Santa Monica, CA; Zeegers, Munich, Germany. I think he is more expensive than Dr. B maybe since he's in Munich as opposed to Bogen which is a small city.

I believe if you ask Mark Minster (look at member mmglobal which will give you his business site), he can set you up for a quick consultation with Dr. Bertagnoli. He can probably tell you about other surgeons in the U.S., but I believe he won't answer on this site - conflict. You can get a recommendation from him, it doesn't mean you have to go to Germany. It costs around $250 for the actual consultation whether you go thru Mark or Dr. B and Mark would be faster. Asking Mark questions is free (within reason - lol).

I don't know which device you're looking at, but Yue and Bertagnoli use ProDisc (may use others) which I've heard is not as forgiving when it comes to facets.

You can also call Synthes, the manufacture of Prodisc-L, and ask them for doctor's names that are doing ADR lumbar surgery. Then you have to call them and ask how many they have done. Sorry that it takes so much work to find out what you want to do.

I don't remember if you've tried getting insurance coverage for ADR in the U.S. But if you can't, the cost is usually less in Germany, even with the exchange rate, flight, etc. If you can't get insurance coverage, the doctor and hospital here will give you approximate costs - and I think without insurance they will give you a better price.

Good luck and God Bless, Sandy

[dshobbies]

Mark's business site is GPN Artificial Disc Replacement ADR.

[Kathy]

Dr. Yue is one of the researchers for the Activ-L clinical trial. By doing the trial, they pay for all charges that are incurred at the hospital. You pay (insurance is billed and you pay the remainder) for pre-op visits, testing, follow-up visits, medications, physical therapy, x-rays, etc. I had posted a week ago "Have you heard of any of these dr's?" thread, which listed Dr. Yue. The list was all the dr's still doing the Activ L trial. I decided to go to Florida to Dr Garcia, wanted to go there or to California, as I am not made for the cold weather. "Winter" where I am going is low of 65, average daily temp is 75-78; my kinda place.

[treefrog]

How do you make contact with any of the researchers doing clinical trials, in order to find out if you qualify? I had tried to look through the FDA website, to see which trials were open, but I didn't see any. But then I hear people talking about these ADR trials being open, and I don't know where you all get the information from.

Well, after tomorrow's second opinion consult, I can decide how I want to proceed from there.

- Contact Mark about consults with German doctors (although I guess he doesn't work just with the Germans).

- Look for doctors in the US doing ADR trials, and figure out how to contact them.

- Contact some other US doc's whether they are doing trials or not.

I don't know. I think I will have a better idea tomorrow. I have a lot of questions lined up for this neurosurgeon. Including getting his opinion on 2-level ADR, and who he thinks is best to do whatever surgery he feels is right for me.

[treefrog]

The consult with the neurosurgeon was a bit discouraging. He doesn't seem to like ADR, said it didn't produce any better results than fusion. Of course, he might be biased, his practice is expert in a minimally invasive fusion technique with approach through the side.

But he said in my case, he would say surgery is 50/50. He said, if my pain were conclusively mechanically induced, then surgery would be more clear cut. In other words, he thinks results are best if a patient has mechanically induced back pain.

Mechanically induced back pain = pain that goes away with relief of the pressure on the disc, for instance when lying down.

He also said that with my transitional anatomy, that he wasn't sure he would be able to get to my L5-S1 using his minimally invasive side approach fusion technique...which shows you where his head is.

He said the Europeans don't think like "us", and I should only go with data from the US. That there wasn't much more than anecdotal evidence from Europe, so he doesn't count that as evidence. Which that may be true....but.

He had extension and flexion x-rays done before I saw him. But he didn't mention the results of these, so I don't know if they showed him anything in particular. He ordered another MRI, since mine was a year old. Then I go see him again.

I have the MRI on 2/11, then the consult with him on 2/18.

I think I will ask about getting the MRI and flexion/extension x-ray images from him on disc (if possible). And I will also ask my PM doctor if I can get the old MRI (though I have the films already), x-rays, and CT-scan and x-ray from the discogram images on a disc as well. Then I will have them conveniently available for other consults.

Especially after today's consult, I am very discouraged. I am scared of what my life will be, if I can't get rid of this pain. I will most likely have to look for a different job. Because although I know my boss values my contribution to the lab, I don't think that for the long-term he will consider what I am doing now worth the amount he is paying me. And I know that it must be very tiresome for my boyfriend to have a girlfriend who can't do much of anything social, or clean the house, or have sex. Will he want to stay with me? Even after being together for almost 18 years, I'm not sure.

It seems like surgery is my only option, even if the outcome is so up-in-the-air. The only possibility of being pain-free, or close to it, is surgery. But again, the idea of surgery scares me. What if I end up with more pain? Unable to care for myself? What happens to me then?

Right now, I am inclined to go to Germany for surgery. I really, really do believe that is my best option, and seems to be the best option for any spine patient. But based on that last statement, am I being naive and unrealistic? I haven't even had a consult with anyone in Germany. But I keep hearing over and over again, that the most important consideration is the surgeon. Make sure you have a surgeon who has done 100's of surgeries. And I keep hearing how Dr. Bertagnoli and Dr. Zeegers are the best spine surgeons in the world. Well 2+2=4. I should go to Germany for surgery.

My head is spinning.

[dshobbies]

Cathy,

You have to stop beating yourself up. If your boyfriend has been with you for 18 years, surely your relationship is not shallow. Most marriages don't last that long and I'm sure he WANTS to be there for you, no matter what. But I will offer this advice, if you're that concerned and it is obviously bothering you, there's only one person you should be talking to about it, and that is him!

About your possible surgery. Once you get your new MRI, you can send them to Mark, located in Fountain Valley, CA, who can digitally put them on his website for a consultation with any doctor in the world, including Dr.s B&Z. His fee in nominal and you'll get either or both opinions on your best course of action from the comfort of your living room couch. I realize I'm touting Mark's services but in you want their opinions, this is the quickest and easiest way to do it.

Good luck, Dale

[mmglobal]

Cathy, go to the GPN page and click onto the main patient stories page. click on my wife's presentation... caring for a loved one in pain... being the spouse of a chronic pain patient. This will open your eyes to some of what they go through.

[treefrog]

I had a talk with my boyfriend last night, and again this morning. He was very supportive and loving. Said that he would be there for me, whatever I decide. And told me not to worry about the financial aspect, that we would figure out a way to make it work. Though it might require belt-tightening for several years.

I think I was just overly-emotional.

Today, I was able to get some test results that I had not seen before. The report from the CT-scan after the discogram.

CT of the lumbar spine with multilevel discograms.
Date of Birth: 11/21/1962.

Comparison: none.

Indication: Pain. Status post discogram.

Technique: Multiple axial images through the lumbar spine at the levels
of the discogram. Evaluation is somewhat limited as coronal and sagittal
reformatted images were not obtained.

Findings: Anatomic alignment of the lumbar spine. Preservation of normal
vertebral height. Mild disc height loss best visualized at the L4-L5
level.

L1-2: There is no contrast identified within the disc. There is a small
amount of contrast in the right lateral epidural space, possibly
secondary to an injection.

L2-3: Contrast is isolated to the central disc with a small tract
extending peripherally, likely along the needle tract. Small amount of
gas likely secondary to injection. Small amount of contrast in the right
epidural space. No significant disc bulge.

L3-4: Contrast is isolated to the central disc. No significant disc
bulge. Small amount of gas likely related to the injection. Mild facet
degenerative changes.

L4-5: There are moderate to severe disc degenerative changes of L4-L5
level with disc height loss, osteophyte formation, subchondral sclerosis
and subchondral cystic changes. Contrast is identified within the disc
and extends to the periphery of the moderate circumferential bulge best
visualized left laterally and posteriorly. Mild facet degenerative
changes.

L5-S1: Moderate degenerative changes with disc height loss, osteophyte
formation and subchondral sclerosis. Contrast extends to the periphery of
the mild, circumferential disc bulge. Mild facet degenerative changes.

Impression: CT discogram as above with facet and disc degenerative
changes most pronounced at the L4-L5 and L5-S1 levels.

I have reviewed the films and concur with the above findings.

What has me worried, from this report, is the facet degenerative changes seen at L4-L5 and L5-S1. I wonder whether ADR is the best course of action for me.

I have some questions for you guys, but I think I will start a different thread for that.

[treefrog]

L4-5: There are moderate to severe disc degenerative changes of L4-L5
level with disc height loss, osteophyte formation, subchondral sclerosis
and subchondral cystic changes. Contrast is identified within the disc
and extends to the periphery of the moderate circumferential bulge best
visualized left laterally and posteriorly. Mild facet degenerative
changes.

L5-S1: Moderate degenerative changes with disc height loss, osteophyte
formation and subchondral sclerosis. Contrast extends to the periphery of
the mild, circumferential disc bulge. Mild facet degenerative changes.


I am off to 'google' what these terms mean, but can anyone tell me in layman's terms what these things mean?

[treefrog]

Wow, okay - I found a really great explanation for all these findings and more.

X-ray Evidence of Osteoarthritis - Joint Damage On Osteoarthritis X-ray

Now, as to what it means for my condition, treatment (surgery), well that's a big question.

[dshobbies]

Cathy,

From what I've heard and read, ADR may actually be contra-indicated with facet degeneration. This is definitely something to discuss with your doctor.

I'm glad you talked to your boyfriend. I hope you feel a little better.

Dale

[treefrog]

Well, things are going fairly well with me lately. I decreased my pain meds to 10mg Opana-ER twice a day (from 20mg). When I first did it, I had increased tingling and hot feeling in my feet and my right leg, but that has mostly gone away. Sometimes when I first get up in the morning, my feet feel hot and tingly, like they have been slapped on concrete or something. It mostly (always have a little strange feeling in my feet) goes away after I've taken my meds and been up for a while.

But one thing that just hasn't really been in my consciousness is taking breakthrough meds. I have percocet, and my doctor confirmed that it was okay for me to use them when I needed a little extra relief. The pills I have are 15mg, which are too strong for me to take as they are, so I will cut them in half, and keep a few with me for when I need them. She did say, that if I was needing to take them more than twice a day, that she would say I should increase the long-term meds (Opana-ER).

Even with decreasing my meds, my pain level has been fairly low. Ranging from 2-3.5 on a scale of 10. This is good for me, as I had been averaging 4-5 several months ago. I feel like I am getting the pain under better control, finally.

Next week, I may try to increase the amount of work that I do. I am very afraid of losing my job, with my current limitations. But, I don't want to risk my health, either. If I can manage to do more, while managing with my meds, then maybe it will work out all right.

My PM doc also ordered the Dexa bone scan, that will be on Feb 13. I also asked about getting my records, and there doesn't seem to be any problem with doing that. I will wait until I have the Dexa scan finished, so it can be included in my records. And since I will be having the MRI on Feb 11, it seems reasonable that I would have to wait at least until I have the follow-up with the surgeon on Feb 18, to get those results/records as well.

The PM doc also suggested seeing a Chiropractor. She did a little bit of manipulation when I first started seeing her, and at the time she didn't think it would help me all that much to do more. But now, she said it might be worth a try, though with someone who could see me more frequently than she could. Chiropractors scare me, but if they are as gentle as she was with me, I can see giving it a try.

This turn of events (pain level), has me questioning surgery. I am wondering if I should give some other things a try first. Like exercise (walking and stretches - particularly my hamstrings, they are always tight), maybe Chiro, and meds. I did try PT when I first started having problems, and it made my pain worse. But I wonder if lighter activity, like walking and stretching might help. I am so bad about doing "exercise", there have only been a couple of times in my life where I've gotten into a routine of some kind of exercise. But those times have never lasted more than a few months, until some pain interferes and I stop.

Even though my pain level is low, it still interferes with my ability to do my current job. And that has me wondering whether surgery then is the answer. I have thought about looking for a different type of job, so that my boss can find someone to do what I can't (he has specific needs coming up in the next few months, which currently I can not do). But with the economy the way it is, that is going to be extremely difficult. And I can't imagine taking a new job, and have my back all of a sudden get worse, where I absolutely need surgery and have to be out of work. Where I am now, I have accrued time and benefits. Losing this job would be bad. I am so conflicted, I want to do whats right for me, and I don't want to put my boss in a bad situation either. The outcome for me -- surgery or no surgery, is unknown -- how do you work with that?

Sorry, about that. I've just ranted, stream of consciousness kind of thing.

[New-disc]

Cathy,

Thank you for your update... sounds like your doing a bit better.

Don't over-do-it with the work thing, health before $.

Todd

[treefrog]

Thanks Todd. In the back of my mind, I always remember one of my co-workers saying "take care of yourself first". But sometimes it's hard to remember, when my boss is saying he's scared of what is going to happen during the next few months. And I don't blame him. But you're right, I have to do what is best for me....period!

[dshobbies]

I would be very weary of chiropractic services. I don't want to criticize an entire industry and just like in any profession, you get both the good and the bad, but they can do more harm than good. I believe my rupture was caused by a well intentioned chiropractor I had used for more than 10 years. Not only should he have realized my injury had progressed past his capabilities, but he also should have known better than to twist my back at all.

If you decide to go this route, please be careful and cautious.

Glad you're doing better. Hope is continues, Dale

[treefrog]

Thanks for telling me that Dale, I will definitely be cautious. If I feel like they are doing something I am concerned about, I will tell them to stop. Maybe I can wait for the MRI results before I set an appointment with a Chiropractor.

And I agree, Chiropractors are not a profession that I feel totally confident in going to. But I know there are people who swear by them. And I trust my PM doc.

[mmglobal]

I've had several surgeons tell me that they see 1 person a year paralyzed from chiropractic manipulations. It's not that they are unsafe... it's that they are unsafe if you have instability or spinal cord compression.

They help a lot of people and I'm not saying that they are not good.... I'm just suggesting that unless you know your neck is OK... don't let them crunch it!

All the best,

Mark

[treefrog]

Oh, yes. I have no intention of letting them do anything to my neck. I would only let them work on my lower body. I have heard too many stories of people being injured by having manipulation of their necks.

But, thanks for the reminder.