Hello! Looking for help.

[dlow]

Hello everyone,

First I want to thank SPS and the members of this forum for such a wonderful service. I've already learned 100x as much as I knew about my condition prior to finding this site. Also, it's comforting to know I'm not the only one dealing with these issues and there is a support group on the internet where I can seek help/advice. This is why I'm posting today, I need some help/advice.

Current condition:

I've been dealing with back problems since I was young. I first noticed an issue when I was around 10. I bent over to shoot my bb gun and suddenly got an extremely sharp pain in my lower back. It went away about as fast as it came, but I was a little sore afterwards. Everyone thought nothing of it and I quickly forgot about it (if only we knew then...) Fast forward a few years and in 2007 I finally saw an ortho and got my first set of MRI results (27 years young at the time). The diagnoses was DDD with a moderate bulge at L5-S1 and a couple of other minor bulges. My last MRI was done about a year ago and it looks like things have progressed a good bit with bugles throughout the lumbar and some issues in the thoracic as well with the L5-S1 having become much larger and L4-L5 is now about as bad as L5-S1 was back in 2007. Recently, I was in so much pain that I couldn't get off the floor for nearly 24 hours and I'm starting to get sciatica pretty badly in both legs down to my toes. The sciatica is new and it scares me that my condition may start impacting my ability to work.

This is where I need help. My current ortho is a complete jerk. Last time I saw him, he simply told me that I wasn't a candidate for surgey and left the room. I didn't even know I had thoracic issues until I asked him specifically about them (this was over a year after my most recent MRI). So, hopefully you guys can help me. How can I go about getting second, third, forth etc... opinions and how does one find a good ortho/neuro? I live in the Atlanta, GA area if that helps.

Thanks ahead of time!

[trkdoc714]

Your Ortho sounds like one of the ones I saw.

I ended up seeing Dr. Burkus in Columbus, GA for follow up after returning from ADR surgery in Germany. He was extremely helpful and participated in the clinical trial for the disc I received. He's at the Hughston Clinic.

Others I saw were:

Franke of Pinnacle Ortho. Good doctor/ surgeon but I'd already lost confidence in local treatment.

Rhee of Emory. May be the guy you referred to. Wanted to do a 4 level laminectomy and possibilty of fusion at any or all levels, most likely only two.

Ki Hon Lin of Pinnacle. Good doctor/ surgeon. Frustrated with limitations of "drive through clinic" and moved a few hundred miles away. Performed both discectomies and really tried to fix me with as minimal procedure as possible.

Neurosurgeon was named Perling. Let me keep appointment then chided me because Pinnacle hadn't sent over records (I signed a release, they didn't request file). Other than that, didn't understand why I was in pain.

If you're looking for more opinions, you might try sending your films and symptoms to both Stenum and Bertagnoli. I know Stenum does and heard Bertagnoli will give you an opinion for just the cost of sending them your information.

Let me know if I can help.

Bob

[dlow]

Thank you so much. I came across dr burkus in my research. I'll try him next. Thanks again.

[dlow]

Well, I went and saw burkus... Thanks for the recommendation, but it was a tremendous waste of time. He confirmed what all the other doctors said "you have degernation throughout the lumbar, you'll probably need surgery at some point, come talk to me when you're ready." I mentioned that I also have some pain in my thoraci. He said he didn't do thoracic, ended the conversation and left the room leaving me with just a referral to emory. He didn't discuss what my surgical possibilities are and he didn't give me any advice about when I should have surgery. The whole "consultation" lasted maybe 10 minutes. Also, they took xrays, which he never looked at! Sigh... I'm glad you had a good experience with him, but it was a total waste of time for me. I'm guessing he didn't have time to talk to someone who wasn't going to surgery soon.

Anyone have suggestions on what I should do next? I've yet to find a doc who will really talk to me about my condition unless I need surgery right now. I'm hesitant to do surgery without having a good reason why I should do it now versus wait. Currently, my pain is about a 2-3 on average with some days maybe a 4-5 and rarely a 9-10 (can't walk) and I'm 31 years old. Should I be considering surgery now? Why?/why not?

I'm lost at this point. Where can I go for real help and advice?

[trkdoc714]

It sounds like I'm not alone regarding the poor options here in Atlanta. I can sympathise what you are feeling. It was at this point that I started looking overseas. I know Dr. Ritter-Land at Stenum will give you an opinion without charge. I think I read where Dr. Bertagnoli may also look at your films free. Some of the other overseas surgeons I believe have fees associated with their diagnosis.

You're not obliged to use any surgeon once you get the opinions. It's just confirmation (or maybe they see something others don't) of what you're already being told.

I'm sorry Burkus didn't work out. I was treated well but I was on the other side of ADR surgery when I saw him.

Let me know if I can help,

Bob

[dlow]

Thanks man.

I'm going to try Dr. Penny next. I have a friend who used him and said he at least has good bedside manners. You'd think with Emory being here, we'd have a better selection. Also, I saw dr. Smisson down in Macon on a whim. He was friendly and spent a good bit of time with me. He just didn't have a lot to offer surgery wise (microdiscectomy was about all he could/wanted do). He didn't have any experience with ADR. He also didn't want to send me to get another mri despite me having new pains in my thoracic, which makes me wonder if he was being genuine or just wanted to get me on his good side for a possible future op (he doesn't do thoracic and didn't seem too concerned about it, despite me reading that thoracic spine issues are much more serious than any other location).

If I find anyone that works out, I'll let you know.

P.S. I did find out who Peter Moyland's surgeon was (the baseball player). He has had a bulging disc since his early twenties. Too bad it was a guy in California http://watkinsspine.com/ I wonder if he saw anyone in Atlanta first? Probably peachtree ortho seeing as how they do all the athletes in the area.

[spinches]

My experience with consulting surgeons outside the U.S. is that Bertagnoli and Pimenta both reviewed my records and offered a free opinion. The opinion was summarized in a brief email from their assistants. I also consulted Nick Boeree in the UK and was charged a consultation fee of around $400 (the international exchange rate varies week to week and affects the cost). Mr Boeree spent a half hour with me on the phone and impressed me with the thought he was putting into my situation. I did choose him as a surgeon and am going to the UK next month for surgery. The amount of time he took to talk to me, and the care he took in addressing all the factors in my clinical picture were major factors in my choice.

Like you, I saw a couple of surgeons race through a consult as if the room was going to blow up soon. I had forwarded all the records they requested in advance of the consults, but they ignored the EMG findings as if they didn't exist, and based their entire opinion on their reading of the MRI. I had the sense that they looked at one aspect of my clinical situation, such as one level of stenosis (when I have 2), and simply disregarded the rest. When I would ask them about the EMG results showing nerve damage in my arm, they would suddenly start looking at those records as if they hadn't seen them before. They subsequently billed my insurance upwards of $600 per surgeon for their service.

Moral of the story is that paying a fee for the consult seems to be a necessary but not a sufficient condition for getting a good one. I was generally more impressed with the international surgeons in terms of their willingness to help, rather than dismiss me with some vague remark about why I am not a candidate for surgery yet. Based on my experience, I recommend that people consider at least getting opinions from a couple international surgeons, especially if a phone consult is available from them. It helped me a lot to find out that their whole philosophy of treatment was rather different from what I experienced with local surgeons.

Good luck with your search,

Sandra

[Katie]

Ditto all of the above. I've had so much better luck with out of country surgeons than local. (I'm from Canada, and the only US surgeon that I consulted with, Dr. Fabien Bitan of NYC, spent a great deal of time with me...great man, but I couldn't afford him without my insurance coverage.

I sent my images to Stenum, India and Dr. Luiz Pimenata in Brazil, and chose Dr. P for his indepth feedback to some unique problems I had. He was also very reasonably priced compared to Germany and is one of the most highly rated surgeons in the world. No one has a perfect record, but I put my faith in him and he handled a fairly difficult case with grace and empathy, not to mention great skill.

As far as the local doctors were concerned re: my lumbar levels, they didn't operate 'just for pain', and according to them, my cervical compressions were much too dangerous to address, so I was left to suffer. Dr. P laughed when I told him the latter opinions, and said any decent surgeon worth his salt should have been able to work on my cervical...it was 'basic spine surgery'...good to know! Wish I had the guts to travel back to those not so decent docs and show them how it should have been done

I spent almost five years chasing my tail, so to speak, before finding a great surgeon. His opinion was that I should never have been left in that condition...that the longer a person waits for treatment, the more likely that the damage becomes permanent. Plus the spine deteriorates beyond repair at times. Thankfully my condition was reversible...even though all doctors here said the nerve damage was permanent. Of course it was, when nothing was being done.............

[KanRunMo]

You've gotten some good advice from SPS members. I've had some of the same problems with U.S. doctors as you've had. The medical schools here must teach them that ADRs should not be done since most of them repeat this mantra. The insurance companies are, of course, a problem in that they are making the decisions for the doctors - and the attorneys are never far behind, sniffing for a good medical liability case, so doctors are very cautious about what they do or say.