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

Kathy · #1 (**permalink**) 02-27-2009, 02:50 AM

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 · #2 (**permalink**) 03-02-2009, 12:10 AM

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 · #3 (**permalink**) 03-02-2009, 04:23 AM

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 · #4 (**permalink**) 03-02-2009, 11:26 PM

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 · #5 (**permalink**) 03-03-2009, 12:29 AM

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