What-If's

[ThornInTheFlesh]

Hello,

'Nice' probably isn't a good word to describe how finding a forum of people who understand the life issues associated with severe back pain/problems...so for now I will just say I'm grateful for the shared information and potential comradere.

I have been planning to write some questions for awhile now but have had trouble putting together my 'story' --because it required re-living some of the past decade which was a painful journey.

I will make it as brief as possible... I am a 45 year old female who has always been very active. Twelve years of gymnastics (age 8-20), later becoming an avid golfer and sailor. I have been off and on disability from my job as an airline pilot since 2000. Each cycle off work lasted longer and longer until 2005....so it has now been five years and I miss my job desperately (been flying since 1986). I miss my life even more. Not surprisingly, I have not played a round of golf in ten years, and sold my sailboat a long time ago.

My job entails long hours of sitting as well as hauling luggage around. Most pain meds are not allowed to qualify for a flight physical. I stopped flying because physically I could not sit there and perform "flight duties"...but also, mentally, the pain was so distracting I was not safe to fly as I couldn't concentrate. I didn't realize that as my condition deteriorated I could no longer perform "life duties"....sitting at dinner or a movie...riding in a car...sports I loved...housework (even the smallest job like standing chopping vegetables)...traveling (I get free travel worldwide and I haven't been anywhere in years)...spending time with friends/family (many of whom don't really understand). I spend most of my time horizontal. You guys all know what I am talking about...

Basically, I have two bad (black) discs at L5-S1 and L4-L5. I have gone through countless days/weeks/months/years of PT, injections, Vax-D (decompressions) etc...all to no (or very limited) avail. I have not had sciatica/leg pain throughout this time...though seem to be getting some in the last several months.

I have had two discograms (2007 and January of 2010) which confirm the condition of the 2 discs from annular tears. Several years of injections tried to better isolate the pain as I have had additional pain generators...SI Joint, Facet Joint.

In fall 2007, I was told by an ortho surgeon in NC that I needed a 2-level ADR....the only catch was that they weren't being done in this country yet and insurance certainly wouldn't cover it. He also said he didn't want to do surgery because I had 'multiple pain generators' thereby my chances for success were not good.

Moved to the Pacific NW in 2008...saw several doctors recommending everything from minimally invasive fusion (with BMP), traditional fusions, to 2-level ADR and a 'hybrid.' So far I have not had any surgery....it is so confusing and complicated...trying to determine the right course.

There are so many "what-ifs"...especially looking at some of the ADR statistics...even for just a single level ADR (70%) vs. 2 level. And the list of complications is scary...and will likely require additional surgeries (as I've read many stories on this forum)

My husband and I are willing to cash our a retirement account to pay out of pocket for a 2 level ADR...we also decided against buying a house to have the money available....but who pays if I have problems/complications downline? Our insurance company sure won't (United Healthcare).

A hybrid surgery has been suggested (fuse L5-S1 with ADR at L4-5)....same problem as above...it would be out of pocket...as would any complications.

A two level fusion has alot of risks too...especially when trying to prevent adjacent level deterioration which is so common.

So many other issues and what-if's...the right doctor,the right prosthesis (if ADR)...if fusion...what about minimally invasive...BMP??? How is Obamacare going to effect this all (I've read back treatments are a big area of planned cuts)....etc.

All discussions I would like to have but haven't found 'experts'....til now. Hopefully I can pick your brains and find mutual support here!

-E

[dshobbies]

Hi E and welcome to the forum,

Your life has been taken away from you and you want it back. We understand.

There's so much to say to you but it basically comes down to your willing to risk a surgery, any surgery. Though we all wish for the whole package, most surgeries, even if successful, carry some kind of forever burden and there are also those that have every reason to be successful but are not. Let me also tell you that most of the forever burdens are still far better than the life you now have.

There are pretty accomplished doctors in the U.S. but as a cash patient, going to Germany will be far less and the best two doctors are both there. I'd recommend Dr. Zeegers and Dr. Bertagnoli. And the single most important decision after deciding on surgery - is your surgeon. Then discuss with whoever you've chosen what type of surgery and product to be used. Once you've made the decision to move forward and chosen the doctor for you, the rest will fall into place.

A huge plus - but no one can say for how long - is the very favorable exchange rate right now. As of last week, the Euro fell to under $1 U.S., currently about $.82. If you act fast enough, you could pay only 80% of the cost. Of course, we can never know how low it will go or when it will come back up to it's usual of $1.20-1.40. However, even at the higher rate, it's still about 1/2 the cost of here and the care you receive is so much better.

E, I wish you a lot of luck. I went through exactly what you're going through right now. I was scared and directionless but that was 5 years ago. Yes, no surgery comes with guarantees but the alternative is living your life as it is.

If you want to talk, please pm me with your phone number.

Dale

[Katie]

Welcome, and I'm sorry you have a need for our forum family.

I went through all the same trauma over the past five years, and thankfully found a wonderful out of country surgeon late last winter. We rapidly made plans and I had a three level, minimally invasive surgery in mid March, just three months ago.

The results are wonderful. I had a non-metal ADR at C5/6 and fusion at L4/5 and L5/S1. The surgeon was Dr. Luiz Pimenta in Sao Paulo, Brazil. I can't recommend him highly enough...he was very empathetic and thorough and made me feel like I was his top priority, unlike any other surgeon in my own country (Canada). His cost for this was almost half of surgery in Germany, and less than one quarter of that in NYC, where I had a consult with another fine surgeon.

I had no horrid pain post-op, as many patients do, and was able to travel around Brazil to some nice resorts just over a week after surgery. I had to be careful of course, but other than being tired, the traveling was not bad.

While I still have some residual pain in my lumbar area, it is nothing like the pre-op pain, and I expect it to disappear after I'm fully healed.

If you'd like more information, feel free to email or send me a PM.