Sooo confused

[airk24]

So i ran across this website and i thought i would join. There are lots of good things on here but i am still so very confused as to what is the right course of action. In 2002 i had a laminectomy as L5/S1 and now L5/L4 is herniated along with some sort of issue of scar tissue from before irritating the nerve. I have been trying to deal with the new pain for about 3 years now. I was on an airplane just last night and i thought i was going to die from the pain, it hurt so bad. I have seen my doctor again and we are getting updated MRI's and x-rays. I am torn as to what the right course of action would be. They tell me they might be able to do another Laminectomy, but that it might just collapse and i will need a fusion anyway. So do i have the fusion? I like the idea of the artificial disk but my doctor (who wouldn't do it anyway, because of the two levels) is against it. Also since i am 32 i keep getting advice of not to do anything. Ugh the pain sucks, and i am tired of being crazy on pain pills. I need help! Any advice?

Thanks, Paul

[jchebert1979]

You are in the right place. I am basically going through a similar struggle, so I really can't offer too much advice, but there are plenty of people on this site that can. Stick around and someone will be able to help soon.

[Katie]

Welcome to the board, Paul. These sites have made a huge difference in my coping skills and finding information about ADR that isn't available elsewhere....first hand advice and experiences are priceless.

If I may offer a suggestion, it would be to get several opinions from doctors familiar with ADR. You can send many of them your MRIs and get a tentative diagnosis from them, at no cost. There are others that you have to pay, but I got my best advice from a surgeon in NYC, one of the best in the country, and it only cost me a consult fee after I went to see him in person. And even that was well worth it. I can give you a name if you like, if you just send me a PM.

Educate yourself as much as possible, by going to the PubMed site, which gives medical reports and studies. Some you might have to pay for, but I was able to gather an awful lot of information free of charge.

All the best.

[dshobbies]

Hi Paul and welcome,

We are here to support and help educate you. I'm glad you found us.
You have a lot to learn.

The first thing is that not all doctors are created equal. A doctor who does not 'believe' in ADRs is not likely to recommend them, even if it is your best course of action. Unless there's a reason you are not a candidate, a fusion may be too drastic, especially for your age.

I too had a disco/lami at S1/L5 which stated the degeneration process up my spine. A second surgery 8 years later at L4/5 sealed my spinal fate. Less than 1 year later, 4 levels were degenerated. A third surgery, disco/lami, was recommended though with only about a 5% chance of success. I found these forums and had a 3 level ADR 3 1/2 years ago. I got my life back. My doctor never even told me about ADRs. What does this have to do with you? Your choice of doctors has a direct bearing on your outcome. Getting second and third opinions are in your best interest. Choosing doctors that perform both ADR surgery and fusions will get you an honest opinion. Choosing a doctor who only wants another ADR notch in his scalpel has only his best interests in mind, not yours. So where do you live, perhaps someone can recommend a doctor in your area.

Then again, depending on your financial circumstances, you may be limited in your choices. Most of us had to pay for our ADRs out of our own pockets. In California, dipping into your home’s equity is a more viable solution than in other parts of the country. What insurance do you have? Some are coming around but a 2 level lumbar ADR is a tough one. Are you willing to travel? Dr.s Bertagnoli and Zeegers, both in Germany are the two best ADR surgeons in the world. Another benefit is the cost in Germany is much less than a self pay in the US. Language with either of these doctors is not a problem. If you’re interested in a consult with them, please contact Mark, GPN Artificial Disc Replacement ADR Mark may also have other suggestions for you and calling him is a good idea regardless. For me, he unwound the maze you now find yourself in. There are other great doctors in the US if money is not a concern or your ins co will pay for this.

Go ahead and get that new MRI and x-rays but don’t leave them with your doctor. You’ll need them for any other consultations.

You need to understand that ADRs were designed as motion preserving. Fusions prohibit movement, forcing adjacent segments to bear additional burdens, often hastening further degeneration, which causes more pain, more surgery, which then affects those adjacent segments and so on. You’ve already had a taste of this by compromising S1/L5 with a lami 7 years ago and now L4/5 needs one too. Degenerative disc disease can crawl up your spine. I don’t mean to scare you but that is what happened to me. One (1994) led to two (2002) which led to four (2003) degenerated discs.

Paul, ask questions, educate yourself and don’t settle for anything you don’t understand. This is your spine and you have a right to make an informed decision regarding your own health.

We are here for you. You’ll get honest opinions. Often we all agree, sometimes not. It will up to you to decide what is in your best interests. Ask us questions. Ask your doctors. Demand explanations until you understand. If your doctor dismisses you, find another one. ‘There, there now. Everything will be OK’ is not good enough.

I wish you a lot of luck as you begin this journey. With all of us, it started the same way. My only regret is not knowing about ADRs sooner. And once again may I say, thank-you Mark.

Dale

[trkdoc714]

Paul,

There are several great surgeons around the globe that can help you. Dr. Ritter-Lang at Stenum Hospital in Germany performed my 2 level lumbar ADR. Today was my 11th week post-op. I celebrated by mowing and trimming the lawn and spent 2 hours in PT. I'm starting back to work on the 22nd and feel great.

If I can help, feel free to PM me anytime. There are several quality avenues to follow that don't charge you fees to look at your films or give you a diagnosis.

Good luck,

Bob

[Michelle Maree]

Hi Paul,

In my opinion the first step is to verify your pain generators. Through diagnostic tests such as scans and more invasive procedures like discograms and steroid injections. A good doctor/surgeon will help you to do this and not just tell you, you need the surgery that they do best.
Then when to the best of the tests abilities you have found your pain generators you can then make a more informed decision as to which way to go.
Whether it be conservative measures like a physiotherapy rehabilitation plan (which in my opinion one should always try first) Or more invasive procedures like surgery. That way you can know that you are fitting your condition to the best procedure for you. It is no use for example getting ADR if you have scar tissue adhesions or facet problems or the extra movement may make your pain worse.Then I suggest getting plenty of opinions from the surgeons that have the most experience at that particular surgery.
Good Luck!

Michelle.

[Michelle Maree]

........sorry i forgot, also like others have said before it is a realy good idea to get a couple of opinions from surgeons who do a lot of both fusions and ADRs, that way you are getting a less biased opinion .
Michelle.

[airk24]

Thanks so much for all the good advice, i have went to visit my parents so i was out of town for about a week or so. I got back and noticed all the replies yay! I went and saw one doctor today he is the one i have been seeing all through rehab, but not a surgeon. I have a surgical consult on july 15th with a good surgeon, but he only does fusions and laminectomys. I need to find someone in Salt lake that does more than that, like the ADR's and talk to them about it. I also am going to find out from insurance what it is would take if i cant find someone here. I have good insurance that covers almost anything, but i am not sure if i can go out of the country with it. So if worse came to worse than i am waiting another year at least i think with the pain until my partner gets out of school and we can maybe refi the house or something and take care of my back.

Once again thanks for all the help i have lots of stuff to look into. To be honest this whole thing is crazy and scary! aggghhhh!

Thanks
Paul

[jessmith07]

Hello Paul, welcome to the forum.

I am just under 4 weeks post-op with a 2 level ADR at L4/L5 and L5/S1. Here's a little cut-n-paste from my surgical blog:

"I had my surgery on a Tuesday afternoon. I was kept in ICU until Wednesday afternoon for monitoring because of my anxiety dissorder, and I guess they didn't want me to wake up and freak out. Wednesday, I pretty much slept, although I did get sick to my stomach a couple of times because of the morphine, but once they took me off of that and I started taking my own pain meds, I was fine. Thursday morning, I woke up at 5:00 am, got out of bed, put on my brace and went for a walk, and walked about 6-8 times total that day. By Friday, I was taking the stairs instead of the elevator (just 1-2 flights, usually just 1, though), and walking for 10 minutes every hour and a half or so. Saturday, I walked out of the hospital and walked about a mile (half one way, then half going back to the hospital). Sunday I left the hospital and flew to Paris to recouperate for a week with my Sweetie. Back pain is GONE! I'm up and walking, albeit slowly, with very little discomfort from the actual surgical site. AMAZING!"

All of that was from being about 1 week post-op. I have been off all narcotic pain meds for a little over a week. My muscles are still a little tight, because I had lost almost 2 inches from the loss of disc height, and I got all of that back in one afternoon, so I take a mild muscle relaxer and an anti-inflammatory at night. I can walk upright without pain. I can lay on my back, which I haven't been able to do in a couple of years.

By contrast, my ex-husband had a single level lumbar fusion (back when we were still married) and it took him almost a year to get back to "normal". He was off work for almost 2 months, and the pain after the surgery was much worse than his pain before. It took him a long time to be able to not take pain meds. Sex was out of the question for a long time afterwards, and he had some dysfunction in that area, if you catch my drift. He has trouble tying his shoes, because of loss of mobility, and that was at a single level. (I, on the other hand, was able to paint my toes a week ago )

All of that being said, everyone is different...

In my humble opinion, fusing the spine is the most unnatural thing you can do to something that by nature was designed to move, and should only be considered as a last resort. Yes, it's very scary and confusing to have to sort all of this out on your own, but you have to do it anyway, and YOU CAN do it! Research, research, research...I knew the risks of ADR, that it doesn't always work for everyone, but it was a chance I was willing to take. I knew that if this didn't work for me and if I ever had to have them removed, that fusion was what would most likely happen. I was also taking a gamble on time and technology; that over time, the technology around revision surgery would improve, and so would my options.

Hope this helps. Please keep us updated.
Jess

[Gil Denis]

HI Paul

Welcome to the site

I know first hand where you are coming from. I too had a lam 15 years ago at L5-S1 in Salt lake Dr Schwartz. Did great until two years ago when I herniated L3-L4 and now am in spinewith five levels of stuff and also my neck.

I am going to the U of U on the 29 of June for more test and consult?

I will let you know how it goes. Send me a P.M. if you want to talk.

All the Best

Gil