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.