Questions, concerns - at wits end

[rhatzy]

IanG,

I have 2 Maverick discs at L4-5 and L3-4. It wasn't an easy decision for me as I put it off twice and finally decided for sure the night before my surgery at Stenum. Now I'm glad I made the decision. I am a captain for American Airlines. I could have stayed in my drug induced stupor and never fly again or get a multi level fusion, which is not very good, or take the plunge and do the ADR and have a chance at getting back to flying and save my house and life. ADR was my only option that would get my life back. The other options would not have given me back my lifestyle. I know three people with multi level fusions. Two have had their fusions redone and all three are still on drugs and in pain.

I chose the Maverick because In my opinion, it is the better of all the discs out there. Less parts(only 2) and a more posterior center of rotation. Also, I chose Stenum in Germany because they do the Maverick and have been putting Mavericks in since I believe late 2004. They have been doing ADR's (the tow surgeons) for more than 10 years. Stenum was great. My recovery was tough as it took me a good 8 months to finally get off all meds and go back to work.

You need to ask as many questions and talk with as many people as you can to come to a decision which is right for you. There are no sure things in life and life comes with risks.I knew what the risks were for me and I chose the one that I believed was right for me.

I know you will make the right decision.

Mark

[ianG]

Thanks everyone, these are just the types of diverse responses I was hoping for.

To answer trucklt's question, a sacralization is when L5 is basically attached or fused to the sacrum. It's a congenital condition and the degree of fusion differs from person to person. As Adrienne explained, this causes the vertebrae above L5 to overcompensate and rotate more than normal. Since L5 is immobile disc problems often arise and only get worse with age.

Annapurna, thanks for your comments. Several doctors seem to dismiss my problems just because I can ride around on a bike and bend over and touch my toes. I know my problems are not as severe as some on this forum, but my the quality of my life is definitely affected and with every passing year I'm forced to give up more and more activities. Just holding my friends newborn baby the other night became a chore in a matter of minutes and I was forced to sit down.

I had two epidural injections in my 20's which did nothing and actually left me feeling worse for several weeks after the procedure. But I've never had a discogram, which it seems I should look into as MRI's don't really show conclusively what is causing the pain. Since a discogram is an invasive procedure does this cause long or semi long-term damage to the disc?

My back became an occasional issue in my mid teens and turned into a permanent daily problem in my early 20's, so I've been doing my own physical therapy for quite a while. The best way I can describe it is I have constant numbing pressure in my low back and hips accompanied by severe bouts of sharp pain in my mid-back that can last for weeks, sometimes months, at a time. I'm not at an emergency state just yet as I'm still able to lead a fairly normal life, at least normal by my standards. I'm only now exploring ADR as an option, but I can definitely see things deteriorating in the next few years so I'm trying to gather all the information I can in the meantime.

tconner94, good luck with your surgery and please let us know how it turns out. And thanks to everyone for your replies. It helps a ton and I wish everyone here the best in their search for relief.

- Ian

[2cool4U]

I second your valid concern about doctors trivializing your pain b/c you are able to keep up your activities. I have been able to continue to work full-time and take call, as well as travel with my wife and kids. However, the difference is that I do all of the above in moderate pain which becomes severe at times. When your physical therapist sees that you can complete 30 reps of such and such activity or your pain physician and/or her assistant asks you what your current level of pain is and you reply with "2," it seems to undermine your credibility when you complain about your back pain.

The bottom line is that pain is very personal. You must be the one to decide how much you can take. Medicine is just now catching on to the significance of pain and the importance of its proper treatment. One quote I remember well from over 4,500 pages I have read on pain(both non-medical and medical) states that "pain is what the patient says it is." Even though I am a physician, 90% of what I know about pain and pain management, I learned in the last 18 months as I became a patient. Most doctors don't get exposed to this stuff in school or in later training.

Keep looking until you are satisfied with the answers that you get. Then you can decide if you need to pursue surgical treatment. Just remember that pain can slowly and gradually affect every aspect of your life if you don't get appropriate treatment when needed. Educate yourself and then be your own advocate. Try to recognize misinformation when you come across it, and stay informed. It's the only way to navigate the waters of pain management.

Good luck.

[trucklt]

You hit the nail on the head. Many people, including many drs., think that if you can walk and talk you can't be too bad off. I wish that there was some way for them to experience the joys of DDD for just a short time.

Discograms: I've had two and had no long-lasting effects. I've only heard of one patient on this forum who had lingering pain from a discogram. Discograms are no joke but they're not unbearable. A trained diagnostic radiologist threads a very thin needle with an attached catheter into each suspect disc plus at least one good disc. You are awake for the procedure but usually with a little Valium or Versed to take the edge off. Each disc is pressurized in turn using a solution containing a dye which shows up under xrays and cat scans. A good disc (my L3/L4 and L5/S1) had no reaction. When he pressurized my L4/L5 disc, I felt like I was being electrocuted. The radiologist then injected some anesthetic into the to calm it back down. They did a CAT scan which showed that my L4/L5 disc had a radial tear which was allowing the dye to escape. I felt fine the next day after sleeping off the sedatives.

If you get one done, try to find someone who does them regularly. I don't know where you live, but I had my last discogram done in New York City by a radiologist who did discograms every day. He hit all the discs on the first try and the whole thing was done in about 20 minutes with no fooling around trying to get into each disc. If you happen to live in that area, e-mail me and I'd recommend him highly.

I wouldn't do a discogram until you're sure you're ready for surgery. Most drs. want one within a few months of doing surgery so that they can assume nothing else has turned into a pain generator between the discogram and the surgery. If you can hold off, there will be trials of replacing the nucleus of a disc with the control group receiving Prodiscs. There is a lot of different implants, etc. on the horizon and you might be eligible for some of the trials. Insurance coverage for ADR is a nightmare.

Hope this helps.

[annapurna]

As an engineer I think of things in terms of graphs and plots. I imagine a line of increasing pain and disability that is relatively similar for each person. There's another line that each person draws for themselves that talks to their perception of risks, risk of surgery going bad, risk of doing nothing and getting worse, etc. Everyone draws a different line because we each perceive the risks differently and each expects different things out of their life. When the lines cross on the plot, people act.

I know my father absolutely refused back surgery until his pain peaked and trapped him in bed with spasms during a visit to my brother. He was found in bed, unable to move, by my six-year-old neice. Surgery was reconsidered almost immediately after he returned home. Others have jobs where continued narcotic use is problematic for any of a number of reasons. We, more than most, should know better than to look into another's life and tell that person "you're not bad enough." We can and should make sure everyone appreciates the risks, of surgery, of non-surgical options, and of doing nothing at all.

[cathydownunder]

For what it's worth, the fact that you're in daily pain and it's interrupting your sleep is enough in my opinion to seriously look into surgical options.

Being physically active is great and a much better option than lying around letting your muscles atrophy so keep at it as long as you can though. It'll also be of great benefit afterwards if/when you have surgery.

As other posters said.....first thing is to find yourself a good surgeon, experienced with ADR, then you'll start the rounds of diagnostic tests such a discograms etc. Only then, once you have a definite diagnosis can you weigh up the pros and cons and discuss treatment options.
Good luck.

[ianG]

I live in the SF Bay Area and spoke briefly with my orthopedic surgeon about back surgery. Fusion was the only procedure he was familiar with and that's not an option as far as I'm concerned.

I'll do some digging and see if there are any spine specialists in the Bay Area who have experience with ADR, but if anyone knows of someone in this area they could recommend I would appreciate it. I also visit my family in the Los Angeles area as well, so recommendations down there are also welcome.

I've always looked at people less fortunate and thought to myself, "I don't have it that bad off". But I've learned to accept the fact that I need help and I'm not just whining over something minor. I've been fighting this and trying not to 'give in' for so long, but I've come to the conclusion that no matter how proactive I am about my health this particular problem is never going to get any better.

[Liz]

hi ian,

i'm also in the Bay Area. depending on who is in your insurance network i would recommend consultations with Dr. Serena Hu at UCSF and Dr. James Zucherman at St. Mary's for ADR consults. I also recommend Dr. Brian Andrews at CPMC... he's a neurosurgeon and he's performed highly successful ops on 3 of my friends (mico-d's and a complex fusion). When i saw him 4 yrs ago he was not performing ADR but i heard from a friend that he is now using the Prodisc. He's also a biker. If you are in the East Bay a patient on this forum (mmarsh) has had several successful ops w/Dr. Paul Nottingham in Walnut Creek... I believe he also uses the Prodisc. There's a neurosurgeon at UCSF -- Dr. Christopher Ames -- that is participating in the Activ-L ADR trial; he also performs the AxiaLF minimally invasive fusion. I know nothing about his surgical skills though.

there are a plethora of great docs in LA... i'd rec Dr. John Regan, Dr. Rick Delamarter, Dr. Robert Watkins (Jr or Sr). There are so many others I've heard great things about as well. i'm blanking on the name of the doc that Allen (ans) loves. Many docs in LA do not participate in ANY insurance plan, but some offer discounts or out-of-network benefits. make sure to request copies of any films/studies you receive in SF and bring them to LA docs.

i recommend Dr. Richard Derby in Daly City for an injection jockey. while he did not perform either of my discograms, he's performed a zillion other injections on me. he performs hundreds of injections daily. Surgeons in SF and LA recommend him, and i know a few other patients on the forum see him too.

i caution you not to get caught up in thinking you want ADR b/c of all the hype... make sure that your disc is your primary pain generator first and triple check your facet joints. when i had ADR i hoped to get back to the sports i love including skiing, biking, hiking, and tennis but as my op has failed for various reasons i've been unable to return to any sports and i'm facing more surgery. like you, i take Ambien and hardly sleep.

if you end up being a candidate for ADR, perhaps Maverick will be FDA approved at some point in the near future.

good luck,
Liz

and TCONNER -- good luck w/your op!!

[ianG]

Thanks Liz, this is a big help. I'm picking up copies of my films tomorrow and will see if any of the doctors you've mentioned are in my insurance plan. I have to jump through a lot of hoops to see a doctor out of network, but I've managed to get approval in the past. My primary care doc is pretty pushy when it comes to insurance companies, which helps.

I'm sorry your procedure failed and hope you find something, anything that brings relief. I'll definitely take your advice and the advice of everyone on this forum and explore all my options before making any decisions.

Thanks,
- Ian

[Adrienne]

Ian,

I had a discogram by Jeff Saal who's with the Soar Medical Group in Redwood City. I'm sure there are many who are proficient but Dr. Saal did an excellent job. Hurt like hell, but only for a second.

Was a little achy for a day or so afterwards but no biggie.