New here and scared to death
 

Hi all (I posted this on the other board too),

A little background: I am a 33 year old male. I have recently lost 205 pounds. Exciting stuff (diet and exercise). I went from 399 to 194. I am 6'3", though I think with my disc issues, I am 6'1.5".
My back pain started when i was 17...I was diagnosed with a bulging L5-S1. Since then I have had annoying low back pain...not agony or anything, but I was always aware of it. About 2 years ago, I started to get sciatica in my left hip. It made standing nearly impossible without me being in agony! I had an MRI...the L5-S1 bulge was still there (went down a little bit), but now I had an L4-L5 herniation. I had 3 cortisone injections which has helped tremendously. About 4 months ago, I noticed this horrible burning pain in my lower back when I was sitting. Back for another MRI...My L4-L5 herniation was slightly shrunk, but I now have an annular fissure. My L5-S1 has increased slightly. I had 2 L4-L5 right side injections for the tear...first one helped for two months. Had my last one this past Friday, and nada. I have retrolistehsis of 1.5mm at L2-L3, and 3mm at L5-S1. I have some other small issues (I'll update when I get the MRI report from home), but I have a feeling I'm headed down that surgical road. I visited an neurosurgeon here in NJ...he suggested an L4-S1 PLIF...yeah, OK. I am not doing that. So, Europe/Spain looks like it's going to be my only option.
I guess I'm looking at Zeegers, Bierstedt, and Clavel? What is the best way to contact them? I'm going to have to pay out of pocket (for a 2-level, I'm assuming 45k (American) or so)?
I'm scared to death, and I have no idea where to turn to right now.
:(

Ed5781,

Welcome! And congrats on your weightloss, that is awesome!

I don't have a whole lot of advice for you, I am currently awaiting a decision on my insurance appeal for a two level cervical. I do know that a two level lumbar is not covered by insurance in the US, so if that is what you need then overseas would be your option.

Give your post a bit of time, there are a lot of people who have lumbar experience overseas who will be willing to help you out.

So it sounds like L4-S1 are the 2 levels of concern, correct? Hybrid procedures in which L5-S1 is fused and a adr at L4-L5 are very common and even preferred by many. In fact, it seems that adr's at L5-S1 level are now being done much more selectively. ADRs at the L5/S1 level experience greater sheer forces than the higher levels and the data seems to be showing that more adr failures are occurring at L5-S1 (See Vicki in surgical Outcomes section). 'Drewrad' or Drew just had a hybrid done in Spain last week and I know he's doing great. You stated that you wanted no part of fusions, but a hybrid in which the level or levels above the fusion are ADRs should make this a one and done spine surgery - if you make sure you have a excellent experienced ADR spine surgeon do it.

Get several opinions from different surgeons and decide who you want to trust your spine with FIRST
Then once you decide who you want as your surgeon, then let him explain your options. The biggest step and most important - is to decide who you want as a surgeon, then you get down to business

Thanks Henry. Ya, I'm just afraid that a fusion will lead to more problems...however, if an ADR goes above it, I can see why it wouldn't cause an issue.
One potential issue is finding someone here to treat me in the states, post-op. How did everyone go about doing that? I am in NJ, and can travel to Philly and NYC.

I think that is the reason many decide not to pursue ADR. If something happens to me, there is no way in hell I can afford to go back to see Dr Zeegers. With me, I just decided that I was going to do my absolute best at finding who I felt gave me the best possible chance for success, live a conservative life style (no mountain biking or weight lifting for me) and leave the rest to God. I understand why some don't do it for fear of complications down the road, as for me - I was already spending 22 hours a day in bed so it was easier for me to act. Supposedly ActivL is very close to being approved by FDA. You might want to talk to PittPete about that - I know he is following that closely. That may bode well for the future

It's a good thing you lost that weight - you would have had no chance for ADR prior to

I can't recommend Henry's course of action more: find a surgeon you feel comfortable with before you settle on a course of treatment. There have been people who received ADR but really needed fusions and found their lives post-surgery to be miserable. You seem to have a whole lot going on in your lumbar spine. Much of that might resolve on its own with the weight you've lost but you really need to keep every option on the table until you've found and discussed your situation with at least one, preferably two, surgeons who you feel are trustworthy and competent. Fusion/ADR hybrids are standing up to the test of time so you shouldn't necessarily rule them out until you've had a chance to see if you need the hybrid.

ED,

Second both Anna and Henry with caveats.
You say you lost 200+ lbs but not what kind of shape you are in as meaning strong and kinda in shape or in great shape muscle wise.
My suggestion to you would be to go conservative along with getting informed and comfortable with the surgeon that you would go with if you need to.
In the mean time get in the best shape of your life as best you can given your condition before thinking about surgery. As anna points out "Much of that might resolve on its own with the weight you've lost". Not saying you won't need to do something but without knowing how your core strength is jumping in and getting cut might not be the best option and really won't do a damn thing IMHO if you don't give yourself the best chance in getting strong first. You might be worse off unfortunately. I'm no trying to scare you any more but rather prepare you. It's not an easy thing and you will need all the strength you can muster to be successful.

Fusion at L5S1 is not a bad thing as Henry points out and most recently Drew. For myself I opted to leave L5S1 alone since it was not giving pain and almost fused on its own anyway after 20 years of injections and physical workout along the way.

My advise is to give it time, do your homework, get in shape other than weight loss and you might find things settle down. None of it is easy. Catch 22** back hurts/ hard to workout right? Hard pill to swallow since we all want it to go away quick but as I'm sure you found losing 200+ wasn't easy either. Congrats on that since that takes a lot of will power as well!!

Be well.

Frank

Sounds like you have multilevel degeneration, which most people have to a degree in their middle years whether they realize it or not. Sometimes the issues resolve themselves after going through a settling process, which can take a long time. Other times, that isn't the case.

I had moments where I felt no pain. Then other times when the burning pain would not stop. Ultimately, it got to where I just refused to sit down at all which meant getting a driver. I was Little Miss Daisy at 45 years old. I quit using the dinner table and just ate standing up. I never went out to the movies or anywhere people sat down. But I could lay down, without pain, which I was grateful for.

My bottom two discs were barely there anymore, this non-motion was now causing my higher ups to give way. That's a chain reaction. In fact, a couple months before surgery, I could even feel some thoracics starting to complain. That's how ugly it was getting.

I finally settled upon a course of action after turning over every available rock. Even then, there were no perfect solutions. You will just have to finally accept that and that's when faith comes in.

The process, or the journey, is long, even postop. There will be many levels where you will be challenged. When you finally realize that your American HMO will not deal with you in a manner that is satisfactory, betrayal. When you research and do consults with various other surgeons, and they conflict with each other. When you ask God to heal you and realize He is, but not how you expect Him to or want Him to. When you finally wire money over, gulp, locked and loaded, date set, all systems go.

And when you're there, if you decide the overseas option, and no one speaks your language and you feel insignificant and lost, always remember, especially then, how,God is still present, and a very real help in times of trouble.

Faith will be required of you, along with your own logical use of data and ability to take chances and risk, and ultimately the knowledge that we only live once and time is short. And how much life are we willing to sacrifice in order to not take a shot at getting better? Because deciding not to do anything is also making a decision by default.

In the end, life must be lived, at all cost. And, it will cost. It always does.

Thanks everyone.
There lies part of the issue. I am an atheist, and not having faith makes this incredibly difficult (the atheist's dilemma).

Drew
 

Drew,

Well put from a man thats fresh from one side to the other. Less than two weeks.

Ed,
Athiest or not. Doesnt change the wisdom ("not deciding is deciding in the end" ) Take the oppurtunity and find some then (faith). Can come in many different ways and even if its only faith in man/women to have the talent and expertise to fix you then thatll have to be good enough for you. I dont buy it however. I think many people (atheists) don't like the management (religion) which is totally different than having faith.

What's funny is that you agree that is part of your problem so there is something there otherwise you would not find it to be a problem. Try beleiving in something. It might just work out for you.

Be well and find peace