I was lucky that David was in NY when I had this appointment, even if he was unable to be helpful in note-taking and question-asking as we hoped. Because what he did do was VALIDATE my experience. It was crazy-making to see a doctor who never even asked me if I'm in pain.

I talked to a rheumatologist friend who told me he's the best spine surgoen in NY. I told him I found it impossible to talk with him, and he replied, "yes, that's how it is. He relies on neurologists to take care of people and to send them to him when they're ready to be operated on, and then he sends them back," he said. "Why I sent my father in law to him, and he never met him until the Operating Room!"

I could have told the story of this guy and how crazy it was, but it's so hard to believe, that I'm glad David was there to tell me I'm not crazy; the surgeon was.

(PS. I didn't think him arrogant, btw. I thought him odd. A bit off, like a super-geek who can only talk in an algorithm and if you throw him off he gets all flustered and might get angry, but not mean it. Kind of like overstimulating someone with Asperger's. He was really odd. My own surgeon says he's terrific, and that if I want to abandon him to this one, he'd understand.)

Anyway, I've found another non-surgical thing to investigate. This might be the time for Prolotherapy. This is an injection of an mixture of irritating saline/sugar solutions that cause inflammation and tight up ligaments. It's done by osteopaths mainly. It doesn't have much science behind it, but some people have been helped. A "fibrous" fusion can keep people from feeling pain, they say. So I'm going to call for an appt with someone who does this tomorrow.

You know, this really teaches all of us a lesson about trying new drugs too hastily. I was in a shoe store today that sells shoes for diabetics or people with foot problems. The owner asked me what kind of a problem I had, and I told him I had painful sensory neuropathy with no known cause. He said, "Have you taken any statin drugs?" I was surprised that he was so aware of this cause of neuropathy -- he sees quite a bit of it. This is one thing that makes me angry at docs that won't prescribe narcotics for chronic pain. Narcotics have been around forever, and as far as side effects go they are well documeted. So you can be aware and watch for any and know what you are getting into. But the docs just love to prescribe high levels of seizure drugs instead, and many of those are new and the long term effects are unknown. (I myself take both the fentanyl patch and Lyrica -- the pain relief is good enough that I am willing to take the risk of Lyriica.) But in many ways, narcotics are a low-risk drug, relatively speaking

I forgot to say that I am still thinking of you, Liza. I am appalled at what you are going through and am praying for relief for you.

Lize Jane, DID YOU GET TO SEE HIM ON ONE OF HIS "GOOD DAYS" or "BAD"? I dunno, brilliant or not, I would really, really want to be sure that any doc I have and I can communicate as if we are in the same city, let alone on the same planet?
Whatever choice you make, make sure it's an informed one. From all six sides of YOU the puzzle? Sometimes we can be assaulted with information and not able to wholly process it all properly [like a computer with a fault on the hard-drive].
I may be slower than those 'Slowskys' in processing some of the info I need, I do get there at just about the rite time for decisions tho. I hope you do as well.
For the interim.... gentle s - j

Liza Jane

I know EXACTLY what you meant when you meant that asperger type of behavior in that doctor.

I once went to a dermatologist. Let's call him Dr. W. I first went to him 20 years ago for a cyst on my back. He took care of it.

So fast forward to 5 years go (before I ever heard of Aspergers) and I have a small cyst on the left side of my nose. I DON'T LIKE IT THERE. I wanted it OFF!!! So I remembered Dr. W and he is on my insurance plan so I made the appointment.

I go into his room and I immediately recognize him from 20 years ago and he tells me "sit in that chair". (not on the examination table). and I said "Hi there Dr. W, I went to you 20 years ago". No, "oh really, and how are you, how have you been???" NO NOTHING. He just blankly stares at me and says "why are you here"? I said "well, I have this thing on the side of my nose. He just goes over to a gadget (a cauterizing tool). He walks over to me. No preparation, no wiping it with alcohol, no numbing, NO NOTHING!! and he starts slicing the cyst. I said "jeez, what are you doing?" He coldly says "in a few days, it will form a crust and come off". Put this creme on.

He was the oddest doctor I have ever seen in my whole life. Never smiled once, never had any socialization skills. I wonder if he's married or even has friends. I just got out of there and went to another guy the next week.

And yeah, the thing formed a crust, and most of it fell off. But I never will go to him again. I don't like, well how would you categorize these guys???? No personality doctors????? That's him to a tee!!!!

Couldn't wait to get out. And the waiting room was full.

I just don't get it!!!!

Mel

Now can you see why we LOVE OUR DR. FRED!!!!

Hi. I think docs don't realise how important the personal contact and sensitive caring is. I have seen so many docs and the ones who take the time to explain and really show they care helps the mind so much. It also makes you feel more comfortable with putting the care of your physical health in there hands. I always tell the ones who really care how I appreciate it. I just saw a new neuro and have left 4 messages and 2 were when I was having scary side effects and never got a cal back. Then when I did it was a medical assistant who didn't know and said the doc would call back and never did. I really feel many docs don't care or are so numb to this as so many patients it just doesn't sink in. I think sometimes at job that don't involve lives in peoples hands there is more consequences. There are good docs don't get me wrong but I really feel there needs to be more done to the bads. When I get better that is my mission.Take care and feel better

--that the training most docs get--or at least most used to get, as this is supposed to be slowly changing in the new medical curricula--is specifically slanted towards treating the condition, not the "whole patient".

I have a good podiatrist friend (semi-retired) who tells me this was quit explicitly stated when he went to school; basically the idea is that you have to be detatched from feelings about the patient in order to make sound clinical and treatment judgments. If you empathize with the patient, you may be swayed from recommending the "best" treatment, especially when this treatment is more invasive or more painful. And, if the prognosis is not good, if you allow yourself to feel for the patient, well, then, you may just be too overwhelmed to make good medical decisions. Therefore, it behooves you to have as little emotional interaction with your patients as possible, and you should not encourge them to be emotional with you; one of the ways of doing this is to be as formal and "expert" as possible. Don't laugh, don't make small talk.

I can see the logic of this, but I disagree with the starting premise (that empathy gets in the way of medical judgment).

I also suspect that are a LOT of other things that constrain doctors from making the soundest medical judgments that are not in the realm of emotions--things like pharmaceutical representatvies and health maintenance organization bean-counters--that the medical profession is reluctant to acknowledge. So training docs to be detached for the reason of applying sound medical judgment begs the question.

Fortunately, the opinion does seem to be changing--many younger doctors seem to be trained somewhat differently now, and there are those older gems we occassionaly find. But, given the likelihood that we'll hit somebody who either purposely or inadvertantly won't interact well, it's still a good idea, especially in serious situations, to have that advocate or "wingperson" there to add perspective and dimension, and to push for more info and question-answering.

Today I went to the surgeon who operated on me, armed with my CT scan from December and my scan from April. In April I had had 4 months of no fosamax, steroids, and 3 months of a bone growth stimulator.

My surgeon was astonished. Basically, I'm the worst outcome he's ever seen. There is zero bone growth. All screws are very loose, and there is no bone growing where it's supposed to to fuse.

He said it's all about my pain, and how I am doing. My nerves are not in danger, he says. (I'm not sure, and I will ask my neuro about another NCS to be sure) So, whenever I feel I can no longer tolerate the pain, or my quality of life, he'd re-do me, or support me fully in being re-done by whatever spine surgeon I feel most comfortable with. (really!).

But, he said, it would have to be a 360, anterior and posterior surgery, where they fuse from behind and remove the disks to fuse from the belly.

When I balked at this and asked about somethign more minimal, he said absolutely no. There would be no point. My fear of the 360 is misplaced, he said. It's only about 20 minutes longer than the postrior only, and the recovery is not terribly different. I was out of work 4 weeks with the original surgery; he said maybe 6 with the 360.

But, he said, he's never seen a failure like this. Usually, when a spine doesn't fuse, you see bone growth, just not enough. Or you see one level didn't fuse, while the others did. You don't see this, he said, where all screws are now quite loose, and every level has zero bone growth at all. He's totally puzzled.

So, I asked him, if he does a 360, what makes him think I will grow new bone then? Wouldn't you expect that whatever is preventing my bone from healing would still be doing that?

Good point, he said, we dont know. He said he honestly doesn't know why it happened. Maybe the Fosamax, maybe the steroids, maybe my body rejectd the bone matrix protein. No way to know.

I'm seeing a bone metabolism specialist at the end of the month; he's hoping he has somethign to add.

I asked him to report me. I asked him to notify the FDA and the manufacturers of the drugs I was on and write a case report, so other doctors would know. Afterall, who knows how many women who took fosamax are having failed spinal surgery if no one reports it? He didn't respond. My take was he didn't want the bother.

The test the bone specialist has ordered are all tests to see if bone is being destroyed: bone alkaline phosphatase, a bone density scan, and urine cross-linked collagen. All these show if bone is being broken down.

But I have no idea what he can do to see if my body is capable of growing bone. It's 3 weeks away.

Not happy here. Not depressed, thank goodness, but definitely not happy. I HATE being an interesting patient.

Doctor Ilizerov who developed the ilizerov spatial frame for non union fractures of the arm, tibia, wrist etc. and whose daughter is currently an orthopedist at HSS in Manhattan, recommended that his patients grind up egg shells for the calcium present in egg shells. My wife had a non union fracture of the tibia for three years until she started to take this type of calcium, she told another patient who's x rays i saw and his tibia was shattered into shards and had not healed in 2 years and his healed. It has also been used successfully on horses that I have am familiar with. its your decision but if the type of calcium you are taking is not doing the job, I dont see what you have to lose, but again of course its up to you.

I Googled various combinations of "egg shell calcium", "egg shell calcium bone density", "egg shell supplement", etc. on Google scholar. There are many studies out there supporting what you posted, if the egg shell calcium supplementation includes vitamin D3.

LizaJane's concern is that she may not have living osteoblasts and osteoclasts to utilize supplemental calcium. I'd expect that if that were the case she would have been experiencing multiple stress fractures in the highly stressed bones of the feet, hips, and jaw over the past few years. That hasn't been the case, which to me is cause for optimism. It will be clearer with further testing.

Not to beat a dead horse, but long term use of any drug should be only in case of dire need and approached with caution. Even with well established drugs like those to lower blood pressure, I ask my physician to prescribe drugs with different modes of action every year at my annual checkup. I recently switched from Lisinopril to Cozaar. Both seem to work equally well to control hypertension, but my hair is still migrating from the top of my head to the insides of my ears, nostrils, and my back. Life is so unfair.