Join Date: Dec 2004
Re: Need Advice for dealing with doctors
Sorry that you have joined the group of bad backs, but please don't give up. Rather than post a repeat of my lengthy instructions on finding a spine specialist, please use the search feature at the top of the board and find a thread I started on how to find a spine specialist in your area.
Naturally ortho and neuro surgeons alike treat spines, but in order to find one who is likely to do the artifical disc replacements, or even the newer techniques of spinal fusion or the flexible fusion called dynesys, you need to find a true spine specialist. You see, I didn't know the difference until I had to begin a new search after I was temporarily paralyzed by the ortho/neuro surgery team treating me and having done my first couple of surgeries. There is a major difference in that the ortho or neuro surgeon who chooses to become a spine specialist will have completed a spine fellowship, and I prefer that it be more than 1 year in length. Then they go on to limit their own practice to the spine in particular instead of doing brain surgery as a general neurosurgeon or working on other joints as you expect a general ortho.
Additionally, what I found was that they are more involved in clinical trials and also implement newer techniques and procedures often several years before the general ortho and neuro surgeons will. As they dedicate their practice to the spine, usually doing 80-100% of their time on the spine, they have tons more experience than the general ortho and neuro surgeons who maybe spend 25% of their time on the spine. Many general ortho and neuro surgeons still are not using BMP in spinal fusions, certainly will not likely do ADR's, and you won't hear them speak of the Dynesys flexible fusion.
Let me encourage you to research terminology and write down qustions you want to ask. Perhaps make that list of pro's and con's in what you want from your spinal specialist, because like all doctors and just people in general, we are all so different, not just in personality, but in what we expect, what we want in the way of professional care, what we want to know or don't want to know. Then, don't be discourages, as you might find the right doctor on the first visit, but you could be like myself and I didn't locate my doc until about the 10th doctor visit. Still, it was well worth the frustration, the lugging around all my medical files and films. I saw that some doc's didn't want me to ask questions, some preferred to hand patients to PMs for pain care, some took previous doctor's diagnosis without even examining me, some didn't read films themselves but relied on radiologists reports, and on and on.
I asked lots of questions before scheduling an appointment, trying to ensure I did have a spine specialist, and you will see what I looked for in the other thread. Then I scheduled appointments with several, a couple in one day if possible, but all within a 2-3 week period. I found that when I explained that I was in terrible pain, the staff usually holds 3-4 appointments for critical work-ins. I knew that if I found the right doc, I could cancel appointments for future dates, so it was easier to schedule a bunch within a short period in hopes I would not have to see them all.
The search paid off, as about the 9th doc was more impressive than others, but after seeing my file and my spine, said he would not touch it, but wanted me to see a partner. One of his partners had done nothing but spines for more than 12 years at that point. That impressed me, but true impression was just around the corner.
As luck would have it, I had attempted to set an appointment with this same doctor, but he was no longer at the practice listed in the state's records, having joined this new group. I had set an appointment with his ex-partner, but never went to see him. Let me tell you, that had I not sought out a true spine specialist, I would not be walking today. As it is, I had my fourth fusion, this one was 10 levels, done in Dec 04. Since Mar 05, I have been achieving more and more of a normal routine and now am extremely active and living without being in constant pain. Oh, there are days that I have pain, and use my pain patches many days, but I don't have to have full doses of patches and oral med daily, and it is grand to have returned to a normal life.
Set you goal, search for a true spine specialist, list your questions, decide what you want in your doctor, take records and films to all visits and ask the same questions of each doc, research any diagnosis and treatment discussed and remain positive that you will do all you can to be your own best advocate, making the best decisions you can based on all the research you do and information you get from the doctor. Because my doctor does not mind my asking questions, is willing to explain why or why not a particular treatment or surgery isn't for me and why something else is, helps me not only get a better grasp of my condition which he always explains very well, but helps me ask him better questions about restrictions, things I should be doing, etc.
Also, there is a thread at the top of the board from Bionic Witch about the site called spine universe. One of several excellent sites to help you with research about the spine, about diagnoses, tests, and procedures.
Hope this and the thread I referred you to will be of some assistance to you. Many good people on this board, and you can learn a lot.
Best wishes and do let us know how you are progressing.