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Old 04-02-2006, 09:42 PM   #1
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Angry Need Advice for dealing with doctors

Hi! I'm new to Healthboards and have gained a lot of useful information by reading the threads. It saddens me to know there are so many of us in pain. I have been dealing with severe back pain for 4 years now. I have DDD L4, L5, S1 with fractures in the vertebra between L4 & L5, bulging discs, arthritis (naturally), narrowing of the spinal column and lumbar scoliosis along with tears, fissures and a whole bunch of other stuff. Last year, my Dr. said I needed surgery but felt I was a good candidate for disk replacement and referred me to an orthopedic institute that didn't take my insurance. He then told me to go though my insurance to locate another and let him know who they were. After going to 3 different doctors whose staff said it was their specialty only to find out later they don't even do the surgery. I finally ended up at Mayo and they don't do it either. They sent me back through PT, injections and so forth, finally put me on meds and completed the diskogram and CT scan that shows I am far worse than I was a year ago. i.e. the fractures which now likely wouldn't support the artificial disk. After running their tests, they too said I needed surgery. When I met with the Neurosurgeon, he said he would refer me to radiology for IDET for L4, but that it likely wouldn't work and to let him know. I asked him about 15 questions and he didn't answer any of them. NONE! I was so upset when I left I started smoking again. (Really bad for a back problem) This guy is supposed to be the head of Neuro. I immediately called my referring doctor and told him and luckily he was just as mad as I was. This doctor didn't know a thing about my condition, didn't read my file and took zero time to even consider the previous doctors instructions. I really want to turn him in but don't know how to do that. My doctor called me that Sunday and said he had another doctor at Mayo he wanted to send me to. This one is younger and very well versed in Minimally Invasive Techniques. He said I need fusion and would I see this other doctor. I agreed after he encouraged it and then find out my appointment wasn't for another 3 months. THREE MONTHS. I just felt like I was given a huge blow. I was able to get the appointment moved up a month and it is in 2 weeks. I have such high anxiety I can't stand it. I am in so much pain every day I can't even be normal with my kids. Does anyone have any advice on how I can get through to this doc if he is a quack like the last one? I am so scared I will have wasted yet more time with Mayo and more time I could really be healing instead of searching endlessly for some sort of normalicy to return to my life.

Thanks,
LJ

Last edited by Frosty6; 04-02-2006 at 09:42 PM.

 
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Old 04-02-2006, 10:23 PM   #2
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Re: Need Advice for dealing with doctors

Sorry you are going thru all that you have to get some answers. I am sure most of us have been to doctors that have not answered any of our questions.

I don't think that there is any guarentee on how the doctor will be when you walk into his office. I think the easiest way is to speak to people that have been to that doctor before hand to see how they are. But if you go without references from prior patients you do run some risk. I have found that the best way to minimize this is to do research on the doctor before hand on what their background is on education, speciality etc. Sometimes I have been lucky and the doctor has been a dream. Other times I walked out unhappy. You can be direct with the doctor if they don't answer your questions. If they still don't respond then you learned a quick lesson that the doctor is not for you. And it is time to move on.

Just don't give you. Your health is at hand and the quality of life. Just keep focused on the end result of getting better. Just remember be proactive to get what you want and with which doctor. Don't get discouraged.

Good luck and keep us posted.

Allan

 
Old 04-02-2006, 10:46 PM   #3
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Re: Need Advice for dealing with doctors

LJ, I know exactly how you feel, the same brush offs and 6 month wait for appts only to find they don't take my ins. Sometimes I'd like to scream. You apparantly know how best to handle your situation by now, all I can do is offer you a hand up. I am in your situation and the only way I survive is with God, family, and the friends here. Have you gotten your low stress excercises from PT yet? Do as much as you can without generating pain, it could mean the difference between being able to walk or ride when finally you get fixed up. I ran across a rub for aches that works on my nerves pretty good, it's called austrailian dream. It has done the best so far, but it's kind of pricey. It's at pharmarmacies- you would do best to call around, but it is DEFINATELY worth the try! I think you probably know the answer to your questions better than I do, just be patient a little longer, regroup, and hit it like you were just starting. It will not get done unless YOU do it!! I have 6 children, 5 daughters and a son (only he lives with me). Just so you know where I am coming from, my second oldest daughter is 18 and just came for the weekend. She was in tears to her mother about my back and leg. My leg feels like it is pinched at my low back and has given me a club foot! It is swollen to just below my knee cap down and is huge! I just had it all checked out last week and they are not 100% sure why it is so swollen. My kids have been troopers but I can see it wears on them. I pray almost every night and it helps. I also spend a lot of time online learning. So, lets chat! we can pull each other up out of this! Have a good night. LD

 
Old 04-02-2006, 11:22 PM   #4
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Re: Need Advice for dealing with doctors

llincoln,

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.

 
Old 04-03-2006, 12:48 PM   #5
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Re: Need Advice for dealing with doctors

Thank you for your advice!

 
Old 04-03-2006, 12:52 PM   #6
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Re: Need Advice for dealing with doctors

Thank you for your recommendations, I will look into that cream. As for the exercises, I haven't been doing them and my PT stopped doing them too because I would be so much worse after doing them. After reading the posts, it seems to be a common problem so perhaps I should just suck it up? I still have to do many things they say not to do such as chores and such but they have to be done. And, while it really causes me to suffer worse later, I can't just let things go. Sleep is the worst part of being me right now. While it is all bad, I can't sleep because of the pain and when I finally do fall asleep, getting up is even worse. 10 more days though until I hopefully get some type of resolve!

Thank you again for responding,
LJ

 
Old 04-03-2006, 01:59 PM   #7
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Quietcook HB UserQuietcook HB User
Re: Need Advice for dealing with doctors

llincoln,

Know that I haven't been able to sleep normally on my back ever since I began having back trouble. After the first fusions, my doc wanted me on my back, to ensure I didn't bend it in my sleep. He instructed I use multiple thick pillows under my lower legs, so that essentially I was in the sitting position, as though my chair had tilted over. It really helped by taking the pressure off the spine.

Now, after this big fusion, it has taken me more than a year to be able to tolerate being on my back even in that position. I could tolerate being in the recliner, but that's not quite the same. However, the doc and the PT's stressed that I must use a folded pillow or a thick pillow between my knees to help keep the alignment and the pressure off the spine. They do make a sculpted foam piece you can get in many stores, which fits at the knees and you don't need to deal with a pillow unfolding if you move. These knee pillows run anywhere from $10 and up.

Perhaps one of these will allow you to get some sleep. If you take pain meds, work to schedule your last dose about 1/2 to 1 hr before your normal bed time, so that you will have your best pain relief and allow you to fall to sleep. Lack of sleep will affect your pain level, but it is difficult to get sleep when you are hurting so.

Best wishes.

 
Old 04-03-2006, 08:20 PM   #8
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Re: Need Advice for dealing with doctors

I agree Quiet Cook, I would bet that just about all of us here have some chores we have to do. I do the same with my meds, I have to shut down around 4:00 pm so that my pills have a good start when I go to bed. ( I take 5 pills at 5, and two methadone at 8:00pm. After a while they seem like a normal part of life don't they!
LD

 
Old 04-03-2006, 09:31 PM   #9
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Re: Need Advice for dealing with doctors

I try every position. I am a stomache sleeper-er or was. Lying on my back even with pillows feels good for a few minutes, but I can't get out of bed, roll over, log roll or anything after lying like that. I have to get my husband to help me get up from that position and I literally scream in pain. Not intentionally, it just feels like it cuts me literally in half with a hot sharp very large blade (for emphysis of course). Lying on my side with a pillow between my legs is the most comfortable for my back, but hurts my shoulders and hips plus your limbs fall asleep and get those pins and needles so I roll over again and again.

My legs vibrate really bad when I lie down too. My husband can't feel it on the outside though. I have a little dog and when it rains, her whole body shakes. For a long time I thought it was her and would yell at her to "get down!" not noticing she wasn't even in my room. Then, I thought it was the trains in the distance but noone else felt it. We have since moved and there are no trains but the vibrating continues. Does anyone know what that is?

I haven't been able to figure out the thread to locate how to find a spine specialist in my area either. I can't figure out what I am doing wrong or what I am missing when I look at the google type links.

Best Wishes,
LJ

 
Old 04-03-2006, 10:10 PM   #10
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Re: Need Advice for dealing with doctors

To find the thread I posted on how to find a spine specialist, just choose search on the boards and then advanced search. Type in Quietcook, then select back boards and threads started by quietcook. As I have started only a handful of threads, you should find it easily. I'll find it and bump it forward, so you should find it in the first page or two of the back boards. Hope that helps, but if you have trouble in the search, post a note to quietcook and I'll try to assist. I'm on at different times, but will try to check several times tomorrow.

Best wishes.

 
Old 04-04-2006, 05:45 AM   #11
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Re: Need Advice for dealing with doctors

I found it! Thank you so much, you are an angel!

 
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