Questions, concerns - at wits end

[CharlesinCharge]

Ian,

I also live in the Bay Area (Daly City) and besides the surgeons that were mentioned above (Zucherman and Andrews are both top notch), you can also check with Dr. Kenneth Light in SF. He may still be using the Charite, but he has done many ADR surgeries. There is also Dr. Jeffrey Coe in Campbell. He did my XLIF surgery and has done many ADR's (lumber and cervical) and he is excellent.

[ianG]

Funny, I had a consult with Dr. Light a little over 10 years ago. He had me perform some light exercises in his office and afterwards told me he wouldn't go anywhere near me with a surgical blade. I wonder if 10 years of abuse to my spine might change his opinion.

- Ian

Originally Posted by CharlesinCharge

Ian,

I also live in the Bay Area (Daly City) and besides the surgeons that were mentioned above (Zucherman and Andrews are both top notch), you can also check with Dr. Kenneth Light in SF. He may still be using the Charite, but he has done many ADR surgeries. There is also Dr. Jeffrey Coe in Campbell. He did my XLIF surgery and has done many ADR's (lumber and cervical) and he is excellent.

[CharlesinCharge]

Ian,

I found Dr. Light's bedside manner to be quite poor, he is very arrogant and condescending. I saw him after I came back from Germany (having had a two level lumbar ADR done) because I was having a slow & painful recovery, and he criticized my decision to go overseas even though it saved me about $80,000. He felt the Charite was the best artificial disc to use, even though several newer types (ProDisc, Maverick, Active-L) had come out and were thought to be better. When I asked him how many ADR surgeries he had done with the Charite and what his results were, he puffed out his chest and said "I have implanted 35 of them and never had a problem". I then said "Well, the surgeon in Germany who did my ADR surgery has done over 1,200 implants and never had a revision". He seemed very shocked and had no answer to that, and was very contrite the rest of my office visit. But, I have read reviews on him and he is supposed to be an excellent surgeon.

Dr. Coe has an outstanding bedside manner and is a top notch surgeon, and I drove 60 miles down to San Jose to see him and have my XLIF surgery because he is one of the best. He is very courteous and professional, and his office staff is top-flite. I highly recommend you consult with him, I have been extremely satisfied with his services.

[ianG]

Hey Charles,

I had the same type of experience with Dr. Light. He may be a great surgeon, but I couldn't get past his arrogant attitude to even consider a 2nd appointment.

Thanks for the reference for Dr. Coe. I'm putting a list together of recommended doctors and seeing who fits into my network, so the more recommendations I get the better.

Cheers,
- Ian

[kimmers]

Ian,

It seems like you got some different opinions from people on here. Pain is subjective. I am a nurse. I took care of fusion and other spinal patients.
I discovered there was much to learn after I came down with severe back pain due to DDD and a ruptured disc.
I am conservative when I describe pain because I think the unintended "natural childbirth" I went through four years ago was the ultimate 10/10. I just remember thinking if I could get up, I would jump through the window in my hospital room and end it all. I seriously wanted to die. That is my 10 out of 10 level. I had no pain pills, pain medication or even tylenol as i had a failed epidural.
I like to ask patients (at least when I was working) what is your pain level, 10 being the worse pain imaginable and 0 being no pain?
I have never personally reached that 10 out of 10 level, even with backpain. But the thing is the childbirth pain eventually ended; the backpain was 24/7. It did not end.

My story is I woke up with back pain and what I recognized as back spasms and thought it was just an exacerbation of my normal achy back. Went to work and was popping Advil as much as I could and just trying to get through a night shift. I couldn't stand up straight. Over memorial day weekend, I waited for the spasms to subside and went to my primary doctor after the weekend was over.
He diagnosed it as a muscle strain, started me on a short-dose of steroids, physical therapy and a muscle relaxant. I didn't get better after four weeks of treatment, was referred to a physical rehabillation and pain doc and he did MRI.
Showed small protrustion "herniation" at L4/5. About five months of conservative treatment, including more medications, PT, two epidurals, one facet block and then the test that scared me to death, the discogram.
Had disco in October and then "shopped" around for a surgeon. My pain doc bascially gave me few options, one being IDET, one experimental injection in Texas, then San Francisco and live with it or have spine surgery, fusion. That was when I kicked my research into high gear and found out all I could about my options and potential treatment.
And with that info, I visited spine surgeons, and consulted with two other docs in pain doc's orthopaedic surgeon large practice.

I went with a doc i knew and respected but I listened to all the opinons and then did more research. My home is full of papers and stuff I printed out. To say the least, I know more about backpain than I really care to know.
I was ready to do ADR or fusion with my doc and had my mind set that if it wasn't the Prodisc, I wasn't going to do ADR. I listened to all the information and the pros and cons. The pain was probably only 6-7/10 then with bouts of "OMG, take your breath away pain". In late Novemeber, it increased. I was already on high blood pressure medication because even before the disco, my backpain caused my blood pressure to be dangerously high. Before facet block, once was at 169/110. That sent me to the cardiologist.
In November, after tests to make sure I was a candidate, I scheduled surgery for the day after Christmas, 2007.
I had it post-poned or cancelled at least three times. Fought Blue Cross of Ca tooth and nail. Was crazy with pain in December and barely getting though days. Eventually put on oxycontin and percocet and that helped some. I wasn't getting out of the house anymore. I could not go for walks because it was way too painful just to walk in the house.

I could go on, but the upshot is that I knew ADR was the best thing out there for me and i had my surgeon confirm that.
But I knew that I might not get total pain relief and I was willing to do almost anything just to get part of my life back.

Had surgery on March 11, 2008. Up until just before six months was making steady progress. Near end of August, I felt something happened. Had bad sciatica starting first week of September. Back on Gabapentin, and eventually some narcotics, after being completely off those drugs sometime during the summer.

Now, I am "recovering" from a facet joint block i had done on Thursday. I have learned that backs are incredibly complicated and you have to be patient.
Something is causing bad sciatica and numbness in both my legs, and I don't know for sure what it is. Neither do the docs.
I have been out of work for a year-and-a-half and I expected to be back at six-months post-surgery.
Everybody's body reacts to a surgery differently and some do exceptionally well, and others not so much. But you take risks when you undergo surgery, and you have to trust your surgeon. I'd get at least four-five opinions before even picking a surgeon.

My post-op progress is "slow healing" but I have no regrets about ADR.

Good luck with your decision.

kimmers

BTW, from what I understand UCSF has surgeons that do ADR. My surgeon is Dr. Sylvain Palmer, located in Mission Viejo, Ca., an hour from Los Angeles or so. I recommend him highly but please be aware with even the best surgeons, even ones listed before, this is a major surgery with major risks and a long recovery.

[Sandra L]

knew that I might not get total pain relief and I was willing to do almost anything just to get part of my life back.

Have tears in my eyes after reading your post Kimmers. So many that are still in pain, have hopes that the pain will be better and would have ADR again. Spineys need to have a positive attitude and be patient.

Ian, hang in there, listen to everyone's suggestions. Research, get as many opinions as possible. Hope you have success with insurance coverage.

Best wishes, Sandy

[ianG]

Hey Kimmers,

Wow, it sounds like you've been through the ringer. Differing opinions is what I generally like to hear. It helps me formulate my own opinion when I hear a cross-section of people tell me about their experiences. Pain is indeed subjective. Personally, I've never experienced what I would consider level 10 pain in my life, and I've broken a lot of bones in my time. I've seen that kind of pain in others and wouldn't insult anyone in that position by claiming to know what it's like.

In my case it's just the length of time I've been dealing with this that's finally gotten me to this point. It's like walking around with someone on your shoulders, and every year they get a little heavier, but they never get off. I'm definitely going to spend a long time researching, listening to people's experiences and gathering as much information as I can before coming to any final decision. Measure 10 times and cut once so to speak.

I'm sorry to hear about your setback and I hope it's just that, a temporary setback and you recover completely.

This forum has been an awesome resource and I've had more questions answered than I could have hoped for.

Cheers,
- Ian

[nanfromsactown]

Hi Ian,

Welcome to our community!

I have to agree with everyone based on what you've said, but I have a question which may be something you need to find out. Have you had a discogram? That is kind of the definitive test for know if you need a disc replacement or not.

You sound like a person who really pushes through the pain. I got some good advice from someone a few years ago when I first started looking into ADR. If I was still somewhat active, I should keep what I was born with but if it was impacting my life severely, then I should consider surgery. So it's definitely a very personal decision. Right now, I spend 90% of my time reclining on my bed, and I am sick of it (and I take a lot of pain meds.) I now have to look very seriously at some kind of surgery to find relief for my back and leg pain.

Good luck with your quest!

[ianG]

Hey nanfromsactown,

I've yet to get a discogram and have relied on the opinions of doctors/chiropractors who have all explained what they believe is the cause of my pain. But I'm thinking a discogram is something I need to seriously consider to eliminate a lot of speculation.

I've received similar advice from several people concering when and why I should undergo surgery. Part of me would like to explore surgery now while I'm still young and fit enough to heal correctly. It's sort of a catch 22. I can live for x amount of years and enjoy the time I have left until I get to the point where I can't exist without massive pain meds and endless bedrest, or I can take a chance on surgery now, endure a painful rehab process for a year or longer, and if everything goes well live another 20 years without too much pain.

In the meantime I'm just going to research ADR, see where the insurance companies are leaning and 'interview' as many doctors as I can. I've gone this long, another couple years won't kill me.

Thanks,
- Ian

Originally Posted by nanfromsactown

Hi Ian,

Welcome to our community!

I have to agree with everyone based on what you've said, but I have a question which may be something you need to find out. Have you had a discogram? That is kind of the definitive test for know if you need a disc replacement or not.

You sound like a person who really pushes through the pain. I got some good advice from someone a few years ago when I first started looking into ADR. If I was still somewhat active, I should keep what I was born with but if it was impacting my life severely, then I should consider surgery. So it's definitely a very personal decision. Right now, I spend 90% of my time reclining on my bed, and I am sick of it (and I take a lot of pain meds.) I now have to look very seriously at some kind of surgery to find relief for my back and leg pain.

Good luck with your quest!

[annapurna]

Originally Posted by ianG

I've gone this long, another couple years won't kill me.

Waiting does have its price as well. The best recoveries seem to be those who get the surgery after they're sure that the degeneration is advancing but before too much other damage accumulates, facets, SI joint, etc. This isn't and should never be taken as a scare tactic to get you to pursue ADR now but it is the opposite side to the coin if you choose to wait.