I don't know who to see, what to do, where to go for answers?

[cj cake]

Hello,
I am a 35 yr old male. I have never had any real back before other than muscle soreness.... until last year, about October. I am a helicopter mechanic by trade and had times when I "over did it" a bit and had a week or so of back pain, but nothing that ever lasted long. I changed occupations last August, from a mechanic to an instructor. Well about October I started having lower back problems. I am not sure what caused it. There was one weekend when I "over did it" again chopping wood and had some trouble the following week. The other thing that has happened with my new job is that I now spend 4-5 hours a day sitting behind a computer. Well, I started to get this weird back ache that was in my right side. It slowly got worse and started shooting through my right leg into my calf. I went to the chiropractor.Nothing he did offered any relief. My primary care physician only prescribed pills. I think it was a steroid and some pain pills. The pain pills helped slightly, but thing got worse. I stated seeing a physical therapist. No real results. I tried inversion tables. There was temporary relief, until one night I almost became paralyzed! I don't know what I did wrong, but after about twenty minutes of 45 degree incline, I could not stand. I just fell to the floor and slowly and painfully crawled to the bedroom. After two days, I was back to "normal". I cannot stand straight up, cannot bend over, I walk with a limp, and cannot sleep very well. I am tired all the time.
Well I finally got an MRI done. The doctor told my he is sending me to a neurosurgeon. I have extruded discs between L4, L5, and S1. The surgeon wants to fuse four vertebra together and I am scared! My wife and I were finally going to start trying to have children. After ten years ofschool and work, we are finally reedy to live our lives. Now I can't even tie my own shoelaces. I am desperate for some guidance. I had a horrible first impression of the neurosurgeon. I am looking for alternatives or at least a Dr. who I can trust. The Dr. I saw would not even let me speak. When I started asking questions, he interrupted me and said "let me finish my speach". He told me he has been doing this procedure for twenty years and he knew what needed to be done. I need advice....HELP!

[trkdoc714]

CJ,

The best advice I can give (from experience) is to get a second opinion. And a third and fourth. Five if need be. Fusion is the "gold standard" for spinal surgeons both because it's been done for over 50 years and it's easily codable for insurance claims.

Read posts in this and other forums. Investigate surgeons that use artificial discs. Send your MRIs and diagnosis to as many surgeons as you need. There are several options out there for you both in this country and outside of the US. There are great surgeons that will "partner up" with you to get the best outcome for you and not just the path of least resistance for them.

Both my wife and I have single level disc issues. We were both told we had to have multiple level fusions and/ or laminectomies with fusions or we'd be in wheelchairs. After being a ardent reader of this and other forums, I gained enough knowledge to ask the right questions and understand when I was being mis-diagnosed for convenience sake or because the surgeon was limited in skills or experience.

There are a lot of people here and in other spine forums who will happily help and freely give you good direction in your decision making process. We're kind of a family. Dysfunctional at times, but a family just the same.

Good luck on your new adventure,

Bob

[phylly]

oh my gosh. ditto on the second and third opinions. especially since you do not like him. You need to have a dr. you can trust and someone who can explain what is going on in your back. you may have many other options open to you and there are many great back Drs., out there.
phylly

[cj cake]

[cj cake]

This is an image from the MRI CD I have. There is at least 200 images on it, but this is the one the Dr. kept showing me, so it must have the most information in it. I just scheduled an appointment with another Surgeon for a second opinion. I have a lot of friends and associates who are giving me advice. Although their intentions are good, I don't think it is based on much fact or experience. It goes like this...." This guy at work had the same problem, he went to acupuncture and it fixed him right up. You should go there." or sometimes I hear this one...."Go to Stanford, they're the best!" and I don't even know what they are referring to, the hospital in Stanford, Ca, or some Dr. at Stanford University, or who knows. I did talk to a lady who sounded like she based her recommendation on some personal experience. So I contacted that office to make an appointment.

Any every hear of a Dr. Quattrocchi in Fresno, ca?

[dshobbies]

Hi CJ and welcome to the forum,

You've come to the right place but you do need to calm down. Others have walked in your shoes and come out whole so take a deep breath.

Fusing should be done only as a last resort and only when you completely understand exactly what it means and what to expect. Your personal insurance and finacial circumstances come into play as well.

Your discs are herniated, bulging or any other word that means the same thing. The discs are named for the vertabrae they lay between, eg; S1 is the only sacral vertabae, the one on the bottom and L5 is the bottom lumbar vertabrae. The bottom disc is called S1/L5. This appears to be one of the discs causing your pain. The one above it is called L4/L5 and also appears to be a pain generator.

My very first suggestion is to call Mark. His website is www.globalpatientnetwork.com. He'll calmly explain your situation as he understands it (he's not a doctor but a spinal patient advocate) and if he can't recommend a doctor in your area, Fresno isn't really all that far from Los Angeles. You absolutely need another opinion. Going straight to fusion is the old way. While you may ultimately have this surgery, you should exhaust other options first.

Insurance companies don't like to pay for ADRs, artificial disc replacement. If you have the funds to pay for it yourself, it may be in your best interest to do so. If your finances don't allow for this, there are also trials but I'm getting way ahead of myself. Then again, insurance companies are beginning to come around and you may be lucky, assuming that you are indeed an ADR candidate.

So please call Mark. Get yourself educated so you understand your condition and your options. Ask questions and don't let your doctor bully you. You are paying for his services and if he puts your off or diminishes your concerns, find another one. And ditto to the second, third ... opinions.

I'm very sorry for your pain but there is help out there. We're here to help you, offer support and suggestions. We've been there, done that and understand exactly how you feel.

I wish you good luck, Dale

[fuzzy]

Get more opinions, especially from a Dr. who is comfortable with artificial disc replacement procedure in addtition to the other techniques.

Be very careful with your back for the time being and take the time to get those opinions. Don't do the inversion table. Don't lift anything heavy. No Chiropractors at this point. I second the recommendation for Mark highly.

If you don't have a good impression of your Dr. (your pilot) then it is not safe (to fly...).

Your back looks like a multi level ADR which unfortunately most insurance companys don't pay for. Many here have had multilevel ADR procedures in Europe where they cost much less then here in the USA and paid out of pocket for them (me included).

[Gil Denis]

Hi CJ
Welcome to the forum.
I was lost with my spine problems and stumbled on this site and educated my self and found Mark, I agree with Dale calm down learn and do all the research that you can.
Sorry for all the pain that you are having. My MRI looks a lot like yours and holding on for now.
You are in good support listen to these people We all care

Gil

[mmglobal]

That's a pretty nasty looking MRI. If you are stuck doing what your insurance will pay for, you'll have difficulty getting a motion preserving solution because of the number of levels involved. You really need to discover your options.... do your homework, make informed decisions.

[Terry Allen Blackburn]

Your MRI is showing discs encroaching on the spinal cord which is a dangerous position to be in. I agree with mark, that is nasty looking. It sounds like you met with an ego rather than a surgeon. there is a big difference in the two. I ran in to an ego in Southern Michigan. The guy was a pompous patootey who wanted to take his personality out on mine. Needless to say I did not go along with his recommendations and got other opinions. I ended up going to Germany for four level ADR surgery and am doing pretty well today. I am over two years out from this surgery.

Please get some other opinions as soon as possible as it does not seem like your spine can afford to wait around. You have come to the right place for support from fellow patients that have been where you are presently.

Hang in there.

Terry Newton

[Kathy]

I agree with what everyone is saying, get more opinions. I was referred out of my previous dr's office and told that there was 'nothing else they could do for me'. So, there I was at 28 and told that I would live in pain for the rest of my life... talk about wanting to die. I then found my new dr. who informed me that I looked to be a great canidate for ADR (which I had never even heard of). I saw the first surgeon, who I had never heard of; but was referred to by the other dr. He preceded to tell me to get a fusion, implied that I was crazy and had me in tears by the end of the visit; he was an arrogant a-hole. I then go see the second surgeon, who is highly acclaimed and arguably one of the best in the US... he is great. He listened to me, explained things, spent plenty of time with me and even interacted with my kid. Second surgeon says ADR is best, insurance won't pay, so I see a third surgeon and get into a clinical trial. I am now headed to Miami in 2 weeks for ADR surgery! It has taken me over 3 years of treatment to get to this point. I have learned a lot of what to do and more importantly, what not to do. I have let dr's do procedures on me, that I didn't research; things that made me worse. Lots of wasted time and money. I wish you the best, Kathy

[cj cake]

Thanks for all the advice.
I have an appointment scheduled with Dr. Regan in Beverly Hills in three weeks. My insurance is the only way I can afford treatment. I hope it will cover whatever we decide to do. I have been reading as much as I can about ADR. I hope this is something that will work for me. I will have to wait three more weeks for some answers I guess. I hope I can stretch out the pain meds until then. I will post back as soon as I get some answers. Again, thanks for all the advice so far.

[Kathy]

I have read a lot about Dr. Regan on these forums, supposed to be really good. I'm sure more people from CA will chime in with more on him.
I was also in the boat of only being able to do what insurance would pay for. I tried to get coverage; but was denied, appealled and denied again. I then waited for a clinical trial to start with my dr, only to find out that I was disqualified due to litigation. Finally, I found a clinical trial that I wanted to be in and asked people on here about the different surgeons that were doing it. It came down to one in New Jersey and one in Florida, NJ is cold and FL is warm, no brainer there (who said all spine related issues had to be hard?) I tell you all that, to tell you that just because your insurance won't pay and if like me, you don't have the option of paying cash, spending retirement money or taking out a second mortgage; doesn't mean that there isn't another way of getting it done. I don't know if I dreamed this up; but pretty sure, that I have heard of trials doing a two level ADR on someone. I want to say it was done under the 'compassionate use' clause. I am not sure about more than 2 levels though; but it couldn't hurt to check in to. Or, maybe if your insurance will pay for 1 ADR, you could have a hybrid (I think that's what they call it- chime in others if that's the wrong term). That is where you get both a fusion and ADR. From what I have read, it would be like if for instance I had a bad S1/L5 and L5/L4. I could have both fused, have 2 ADRs put in or have one level fused and an ADR put in the other. If that were the case, I would probably fuse S1/L5 and do ADR on L5/L4. Ok, so enough of my pretend scenarios; not like I need 'fake' problems, got enough real ones. Although your MRI makes mine look good. I have never seen anything like that, I have no idea how you have been living with that pain (at least it looks really, really painful).
Anyway, I know that is a lot of what if's; but don't give up.. anything is possible. And if you do feel like giving up, know we have all been there and are here for you.
Kathy

[cj cake]

I now have the MRI report. I don't understand most of it. Here are a few of the "highlights":

L3-L4...Large diffuse posterior disk bulge along with moderately large focal central protrusion in the midline with annular tear. The protrusion is Approx. 1.5cm in width and extends Approx. 5mm from disk margin and flattens the anterior dural sac.

L4-L5...Large broadly based posterior disk bulge. In addition there is a large right sided focal disk protrusion/extrusion flattening the anterior dural sac with encroachment upon the right lateral recess and right neural foramen and displacing the exiting nerve root. The probable extrusion fragment measures about 8-10 mm by 16 mm and has some inferior migration. There is also mild bilateral facet arthropathy with fluid in the left facet.

I guess this is not good news! I did talk to Mark at globalpatientnetwork. He was very pleasant to talk to. I will stay in contact with Mark as I work my way through this new "adventure". Thank you everyone for all your advice and words of encouragement.

[johnb]

I've heard nothing but good things regarding Regan. I've never met the man but he seems to be very skilled from what I've heard and read.

Good luck with your treatment. I can only speak from my own experience. I'd rather have an experienced, honest surgeon with poor bed side manner than a nice one that lies for the sake of raking in a profit. If you can get an experienced surgeon with good bed side manner that puts your interest before his profits, then its a win win for all. Just be informed and involved in the decision making that involves YOUR health. By the looks of those extrusions, you certainly want to get the your nerves. Also make sure you are a candidate for whatever they are prescribing.

John