Greetings (cervical spine)

[brookscw]

Hello All,

I am new to the world of spinal issues, but I suspect that I've had the current issue for many years and only recently has it become severe enough for me to seek help. Anyway, on to the specifics...

Recently I was diagnosed with a pretty severely bulging disc at C6/C7 that is putting a lot of pressure on the exit root to my right arm and also some moderate pressure to the spinal cord itself. In addition to that disc, the disc above (C5/C6) is also starting to show signs of degeneration, but it hasn't progressed to the point where it is impinging on any nerves.

I actually discovered the bulging discs when the doctors were trying to finally rule out MS (which they did, although I basically had to beg for the additional MRI--I just knew something wasn't right, which was really frustrating when multiple doctors were telling my I was a hypochondriac), and I saw three different neurologists before that finally happened, so I was misdiagnosed three times if that tells you the lack of symptoms that I was exhibiting. I don't have any weakness or pain that I'm sure most of you have had to live with, only slight numbness in my first two fingers and some occasional tingling in my palm and forearm. After seeing a surgeon, he said he was quite surprised that I didn't exhibit more symptoms given the severity of the bulge and resulting foraminal stenosis, but he "only operates on the patient, not on the MRI." In the weeks since, I've been going to therapy three times a week and I've been taking a mild muscle relaxer and an anti-inflammatory and the end-result has been that when I'm at rest (lying down), almost all of my symptoms disappear. In fact, when I wake up, I feel great. However, at the end of the day, my neck is generally pretty sore and my upper back is aching, to the point that in the last few days, I've taken a mild pain reliever before going to bed.

The surgeon said it would be very unlikely that I would be able to avoid surgery in the next few years, and being in the States, currently the only option for me would be a two-level fusion, C5-C7, since I wouldn't be a candidate for single-level ADR given the state of the disc above my C6/C7. After doing a lot of research, I don't believe that fusion should be an option at all for someone my age (very early 30's) and activity level (very active, at least before I found out about the disc problems). There is no history of back problems in my family, so either I got really unlucky, or the degeneration is the result of an accident long ago.

What I'm struggling with is whether or not to pursue multi-level ADR in Europe. I've contacted several doctors and they've all said I'm a great candidate for either the M-6 or ProDisc, depending on the doctor, but I have a hard time believing them 100% since they run their hospitals almost like a commercial business, and at times it seems like they're trying to sell me something. And of course my insurance (United Healthcare) will likely not cover ANY of my expenses, but money is not really a factor. The only reason I'm considering surgery is I'm concerned that the disc will further degenerate and then I will end up experiencing a good deal of pain, and I've read that the longer you wait, the better your chance that the nerve damage that is taking place will become permanent. There is also the fact that I'd really like to get back to my normal, active lifestyle--something that I've been told by the surgeon not to do. The few European doctors that I've spoken to have suggested surgery should take place sooner rather than later (May-June timeframe), but that the goal is to leave me in an unrestricted place as far as my activities go, something I very much wish for.

I'd really like to hear from any of you that might have had a similar issue, as well as any recommendations on doctors or devices that you might have. I've been lurking and have read most of the applicable threads on this forum as a guest, so I feel like I have a good general knowledge of the available options, but any specific advice that people might be able to provide, or any lessons learned would be greatly appreciated.

Thanks for reading...and sorry for such a long post!

[jss]

Brooks,

Condolences on your condition at such a young age, but welcome. There are a lot of cervical patients here with a wide breadth of experiences. I'm certain that you can find some information that will be useful.

That is a difficult decision that you face. Surgeons generally tell you to postpone surgery as long as possible because of the uncertainties of spine surgery, but the other edge of that sword is physical pain and a degraded lifestyle when you might could have relief. Have you had the epidural steroid injections? Some people experience a near miraculous recovery with ESI's combined with chiropractic and physical therapy. I didn't, but a lot of people achieve years of relief.

I had an ACDF at C4/5 in 2000 and another at C5/6 in 2002. In 2009 I had Spinal Kinetics M6 at C6/7 and C3/4. I've been able to return to my active lifestyle of running marathons with the M6's. I've talked to dozens and dozens of people on these forums, and three foreign surgeons that I've really come to like are; Pablo Clavel in Barcelona (who did my surgery); Luiz Pimenta in Brazil; and Nick Boeree in England. All are conservative, well published, not financially connected to any prosthesis manufacturer (as far as I can tell), and seem to produce very steady streams of good outcomes.

Good luck, Jeff

[Justin]

Hello brookscw,

Welcome to the Spine Patient Society. Jeff posted a lot of useful advice above. I would say that you may not have any restrictions after spine surgery; however, your spine will inherently be "different" after any kind of surgical intervention, just something to keep in mind.

In terms of pursing spine surgery, I would personally exhaust ALL conservative care before entertaining the idea of surgery (even entertaining a "pre-emptive" surgery should take a back seat to conservative care). There is a step-wise process to the rehabilitation of spine pathology. Of course, you start conservative (lifestyle changes, medications, injections, physical therapy / rehabilitation [I can't stress this one enough], etc.) and then cross over into more invasive waters (spine surgery).

While surgery can help in many situations, it's definitely not a perfect "solution." Spinal fusion is actually the best surgery for many Spine Patients. I personally believe that proper patient selection, choice of surgeon, surgical skills and a formal rehabilitation program are key for any Spine Patient considering spine surgery. I would venture to say that these factors trump spinal fusion vs. artificial disc replacement.

Just a couple of questions... How is your quality of life currently? What's your pain like on a daily basis?

I wish you the very best. Please keep us posted on your progress, and let us know how we can help.

[Katie]

brookscw, welcome! I don't know if you have followed my saga in your search here, but I had very similar symptoms and experiences as you in the cervical levels.

I also had severe pain in the lumbar region which left me almost incapacitated, and that first led me on my search for relief. However when I sent my images to Dr. Bitan in NYC, he called me immediately and said it was my cervical levels that were critical. He arranged an appointment for a Monday (this was a Thursday and we are eight hours away) and the tests showed that my compression at C5/6 really was severe. He was worried that any small fall or accident could leave me a quadraplegic.

Now this is after numerous surgeons here at home had looked at and dismissed my case, as you have experienced. Since Dr. Bitan is a highly respected surgeon, I decided to take him seriously Unfortunately I still couldn't get surgery here in Canada, and could not afford Dr. Bitan without insurance, so had to look internationally. I had already started the search before that, but it became more intense.

I chose Dr. Luiz Pimenta in Brazil, who put in the Nuvasive Neodisc, a non-metal device at C5/6. While I still have some compression at C4/5 that Dr. Bitan would have addressed with a hybrid (using both an ADR plus fusion), Dr. P. felt confident that this would do the job. He and others had stressed that my neurological symptoms, similar but somewhat more intense than yours, would probably not disappear, but they would stop the progression of any more damage.

Well, I am happy to report that they were wrong . My symptoms disappeared, including the numbness in my arms & hands, and I can now walk on my heels and toes (important if you want to pass a sobriety test ) plus walk with one foot in front of the other. I can look up and see the big osprey nests & babies now too, or anything else, something that was impossible before. In fact, that was the only thing that caused me pain in the neck, tipping my head up much past level. It does hurt a tiny bit if I try to do that for extended periods now, but I still agree with him that one level was probably best.

I hope this helps, and feel free to fire away with the questions and long posts. That's what we're here for

[brookscw]

Thanks to everyone for the replies, they are very much appreciated.

To answer your questions Justin, my pain level now is down around a 2 or 3, and is persistent for certain activities (standing with my right arm at my side, for instance), but very controllable with mild pain relievers. And if I'm sitting down and propping my arm up, or lying down, I don't really have any pain at all.

The struggle for me is that I feel like my quality of life has been very diminished. I used to be very active...working out every day and occasionally 2x a day, and since my diagnosis I've followed the surgeon's advice and stopped just about all of my activities. It has helped...I used to have a lot of discomfort in my shoulder and that pain is completely gone, but I go crazy just hanging around the house all day when otherwise I'd be out playing soccer or going hiking in the Spring weather. I'm trying to be conservative though and not make the problem any worse than it already is.

This probably sounds like whining when compared with what some people are faced with on this forum, but it has been a drastic change in my lifestyle. I'm going to therapy 3x a week and that, combined with the muscle relaxers and anti-inflammatory meds, has made a difference, but the opinions of several doctors I've spoken with (in and out of the States) is that I will never be able to return to my normal activities without surgery. However, I know that surgery is a huge risk, and there is a distinct possibility that I will end up with more problems than I started with, the least of which would be a shiny new $50k debt...

I guess what I was looking for was advice from people who might have been in my situation and whether they decided on surgery or not. And from people who have had spine surgery, if surgery seemed like a reasonable choice given all the evidence, or something I shouldn't gamble on yet.

Thanks again!

[Justin]

Thanks to everyone for the replies, they are very much appreciated.

To answer your questions Justin, my pain level now is down around a 2 or 3, and is persistent for certain activities (standing with my right arm at my side, for instance), but very controllable with mild pain relievers. And if I'm sitting down and propping my arm up, or lying down, I don't really have any pain at all.

The struggle for me is that I feel like my quality of life has been very diminished. I used to be very active...working out every day and occasionally 2x a day, and since my diagnosis I've followed the surgeon's advice and stopped just about all of my activities. It has helped...I used to have a lot of discomfort in my shoulder and that pain is completely gone, but I go crazy just hanging around the house all day when otherwise I'd be out playing soccer or going hiking in the Spring weather. I'm trying to be conservative though and not make the problem any worse than it already is.

This probably sounds like whining when compared with what some people are faced with on this forum, but it has been a drastic change in my lifestyle.

You are definitely not whining. Your quality of life has changed drastically compared to your baseline.

I'm going to therapy 3x a week and that, combined with the muscle relaxers and anti-inflammatory meds, has made a difference, but the opinions of several doctors I've spoken with (in and out of the States) is that I will never be able to return to my normal activities without surgery. However, I know that surgery is a huge risk, and there is a distinct possibility that I will end up with more problems than I started with, the least of which would be a shiny new $50k debt...

I guess what I was looking for was advice from people who might have been in my situation and whether they decided on surgery or not. And from people who have had spine surgery, if surgery seemed like a reasonable choice given all the evidence, or something I shouldn't gamble on yet.

Thanks again!

For me, every one of my three spinal surgeries has been necessary. After my second spine surgery--a 2-level artificial disc replacement in my lumbar spine--I went from bed-ridden to living life again with no restrictions (only self-imposed restrictions).

There is a point where your quality of life hits a level where you know you have to move forward with surgery, as all the conservative care in the world won't help (this is a very general statement). Anyway, that point is very different for a very young, active person and someone that is elderly that just wants to be independent walking around the house without great difficulty and pain.

Ultimately, surgery was necessary in my situation, as the risk of permanent nerve damage was significant and I was bed-ridden. There were many "pros" and "cons" to consider pre-operatively.

Your best approach is seeking surgical opinions you value and giving conservative care a fair shake (most spine problems can be treated conservatively...only 10% of us need spine surgery).

You're asking great questions and covering all of your bases. We are here to support you along the way.

[Katie]

Deciding on surgery is never a light decision. I will pass on what I have learned over the past year though, for what it is worth.

I had been battling for almost five years with severe pain, and on and off sciatic pain for about seven before that. I was almost bed ridden. Like most, I was very tired of not being able to live my life as I had planned, and having just remarried seven years ago, I felt I was robbing my husband as well. He hadn't signed up for this, but thankfully he took his 'for better, for worse' vows very seriously. I battled with our gov't funded health care for all of those five years, without success.

When I finally was able to see Dr. Pimenta in Brazil a year ago, he said that North America is very backward in its attitude toward pain. I was told here that they didn't do surgery 'just for pain', but he recognized what a toll it took on his patients, both physically and mentally. He said I never would have suffered for that length of time in his country.

The other side of the coin is that lengthy episodes of pain can lead to 'phantom' type pain. That even when the cause of the pain is taken away, the patient still suffers to some extent. It is sort of like a phantom limb where the person feels an amputated limb. So Dr. P's opinion to me was that the longer the spine is left in pain, the greater the chances that it won't be a 100% successful surgery.

The fact is that many of the out of country surgeons have much more experience than those here, since ADR etc. have been used for at least fifteen years before us. Plus they have the process down pat regarding looking after their patients. They have learned that many of us have enough on our plates when it comes to surgery, so they have put together packages that include hotels, travel, etc. It simply takes the added stress off the whole situation, if you want to look at it that way.

Yes, there are good and bad out there, so you need to do your homework. I sent my images out to almost a dozen surgeons, and am glad in the end that I had to wait, as I got one of the best surgeons in the world on my case. I am so glad that I didn't get surgery here at home.

I hope you can get enough information and opinions here to help make your decision easier. Not that we can give medical advice, but sometimes a shoulder and past experiences is just as good when making a decision.