Advice Welcome - and Really Needed!

Ellabelle · #1 (**permalink**) 05-20-2012, 11:48 AM

I found this site while researching, and have been reading as much as possible for the past day. Here is my situation, and I sure could use some advice. We are stationed in Heidelberg, Germany, and are due to fly back to the US in 2 weeks. I have been fighting a degenerative disc (L-5, S-1) for about 12 years. It flares up, but the pain never goes away completely. However, I'm able to manage it with advil and sleep med at night. I'm not very active because there's not a ton I can do without discomfort, but I'm not in unbearable pain all the time. My left outside 3 toes stay tingly most of the time. MRI was done at Landstuhl, and my family practice doctor put through all the paperwork for me to have disc replacement surgery. I saw Dr. Feil at ATOS Klinik just this past Friday, and he recommended the surgery - was very nice, very assured of a good outcome, etc. I have to make a decision FAST as I understand this type of surgery is not often available or approved in the US. (I would not be having the replacement that looks like two metal poker chips which rotate and slide, but the "cage" type - not a fusion - he says he has equally good results with both, and that this surgery is far superior to the gold standard fusions in the US.) If I wait till we are back in the US, I will have to start all the paperwork over again.

My question - should I go ahead, schedule it fast, postpone our flight home by a couple of weeks (he said 2 1/2 weeks from surgery to fly date) and just do it, OR should I wait till things are worse? Could I go another 12 years? Even 5 years? I could live with it the way it is now. I cannot seem to have peace about whether this surgery is worth the risk.

Ellabelle · #2 (**permalink**) 05-20-2012, 01:21 PM

I just wanted to add this question - is it ever really over with this? Like if I knew I could just have the ADR and be done with it, I might not be so apprehensive. But what I'm reading with many of you is continuous adventures in surgery. What's the norm?

Ellabelle · #3 (**permalink**) 05-21-2012, 06:31 PM

I am thankful to have found this place to ask for information. I've battled DDD for about 12 years, and it has culminated in my visiting Dr. Feil here in Heidelberg, Germany. He is recommending a disc replacement at L-5/S-1. Unfortunately, we are only stationed here for another week, so I don't have time to have the surgery and recover fully before we are sent to the US. I have several questions and would appreciate input. Here are the basics:

Apparently I have learned to live with more pain than I realized. I am not physically active, and at this time am not working outside the home, so I guess I rest more and do less than I realized. I'm not on pain meds, only a sleep aid and some large advil every other day or so. I have what feels like a hot knife pushing in my left lower back/upper "left cheek", and numbness in the outer half of my left foot.

The xray showed a "levocurvature" of the lumbar spine, which Dr. Feil thinks is a result of all the muscles pulling the spine to one side away from the bad disc. He feels it would straighten back out when the problem is solved.

MRI reads as follows: L5-S1 - diffuse left posterolateral disc protrusion measures 3.5mm AP. Mild left greater than right facet degenerative changes are seen with mild ligamentum flavum hypertrophy measuring 2 mm. Disc protrusion cause is mild to moderate narrowing of the left lateral recess and abuts the left S1 nerve root. There is also mild narrowing of the left neural foreamen without compression of the exiting nerve root. Right lateral recess and neural foramen are patent.

Dr. Feil also noted that L4-L5 is dehydrated but not bulging. He said L5-S1 is unstable. He was so positive about the excellent results of artificial disc replacement, and said because I have beginning osteopenia and arthritis, I wouldn't get the "movable" disc but one that is more like a cage - but not a fusion, which he did NOT recommend.

I am so frightened. Apparently this surgery is not commonly offered in the US so I feel like I am blowing my chance to have it if I don't rearrange our plans and stay in Germany long enough - it's already approved and the paperwork was done before I ever saw the surgeon. When we go back to the US, I would have to start the process over. Options: Return to Germany on my own and self-pay for the surgery at a later time, rush into it and just do it now, wait and get some opinions in the US.

I don't know how urgent this is. The surgeon met with me for two hours and answered a lot of questions, but I was so shell-shocked I didn't ask how dangerous it would be to wait. I emailed him, but haven't heard back.

I have heard that surgery should always be a last resort. When do you cross the line from nipping damage in the bud to waiting too long? Am I there yet? How much pain were you all in before you went for it with the surgery? I'm absolutely driving myself crazy with the choices. Would so appreciate all advice. How fast does this get worse? I've lived with it for 12 years and functioned ok...

mmglobal · #4 (**permalink**) 05-22-2012, 03:05 PM

Ellabelle,

Welcome to the forum! I hope you don’t mind, but I’m moving this thread to the main discussion area where it will get more attention. (You posted in the travel forum that is intended only to discuss logistics and travel related info… there is really no discussion of spine there.)

You are in a tough spot. You’ve been at this more than a decade, so hoping for spontaneous improvement is not that great an option.

You are correct that most motion preservation technologies are still not covered by most insurance in the US.

I don’t understand what Dr. Feil wants to do. It sounds like he is not considering the ActivL or ProDisc total disc replacement.

Evaluating risk vs. reward is very difficult in spine. There is a randomness to the failures that makes them difficult to anticipate. I have 2 lumbar ADR’s done in Germany (2002) with great result. So does my wife (2008). I know literally hundreds of ADR patients. Most are successful, but the failure rate is not insignificant. The consequences of a failure are pretty dire, but in my opinion, it is no worse than fusion. It’s hard to discuss this without knowing what Dr. Feil wants to do.

I have sent you my phone number via private message. Feel free to call and discuss this if you’d like.

We’ll continue this later. Good luck!

Mark

Maria · #5 (**permalink**) 05-22-2012, 08:33 PM

Personally I've learned for myself that I don't make my best decisions when it's "crunch time" and esp. something of this magnitude and involving the spine, surgery in Europe vs. the US and so forth.

Will this be the end.. who knows? And that's not really the premise you should be working from. Rather it should be if you have surgery in Germany it's because it's necessary and you're willing to deal with whatever the outcome is and if you have postpone your return home for whatever reason you can deal with that both emotionally and financially.

No one can predict your outcome. You can be given statistics and high hopes and well wishes tho truly no matter how much of a slam dunk this surgery might appear to be .. you have to be prepared for the "what ifs.." if not my suggestion is to wait.

Which may be in direct contrast to what anyone else here would say esp. someone like Mark who has much more knowledge and experience working with people that go abroad for surgery as he is a spine advocate working with surgeons all over.

So my opinion is just that. My opinion. Good luck to you and I hope whatever decision you make it will work the best for you ~ whether it be surgery now or surgery later.... it's going to be your decision and it is a tough call for sure! Maria

nomorepain · #6 (**permalink**) 05-23-2012, 01:16 PM

Spine surgery is something you want to check out very carefully, maybe see a few doctors get 2 or 3 or 4 opinions and have all information about your condition pros and cons layed for you to make a decision on the best treatment for you. This blog is also a good place to gather information and read about others experiences with diferent treatments, i've been through 2 spine surgeries, its tough, its sometimes not the fix you are looking for, everyone is different how they tolerate surgery, so do yourself a favor and don't rush into any situation. There can be trade offs, other situations or complicaqtions from any surgery, know what those conditions can be, do a lot of homework be your own advocate Take your time, you have dealt with the back pain and problems associated with it for 12 yrs, thats tough in itself that we all know, but take your time, what actions you take today will effect the rest of your life.

Ellabelle · #7 (**permalink**) 05-24-2012, 10:56 AM

Again, many thanks to all of you who have shared your advice and wisdom. I plan to become a regular reader here, and I'll never forget how you've come alongside me to get through this little crisis.

Mark, thank you for moving my thread to the proper place - I was so new and so panicked I didn't stop to learn my way around. And thank you for the encouraging private message - I responded but am not sure how to check whether it went through.