Re: Re: Todays appointment

[Guest guest]

Dear ,

Thanks for the encouragement. I actually think this dr. is quite competent, just without compassion. She is supposed to be a specialist in difficult cases. She just seems to have a chip on her shoulder. Defensive.

I only went to her as a jumping off point, honestly, since I knew she was not an expert in Harr. Rodders. I am going through the hoops for insurance, plus, I knew they would do x-rays, and I wanted to know fairly quickly if it was all in my head or if I am dealing with something. I figured it would be a while to get in to a specialist that dealt with Harr. Rod. Dr. Kasten was one of the drs. recommended to me by Bridwell's office when I called them. (Dr. Lee, whom they recommended, even trained under him, but from what has been mentioned here on line about him, I decided not to go to him right away. Not surprisingly, Dr. Kane-Smart thought he was good.)

My Primary Care Physician took down the names of the Chicago and Missouri Drs I gave her. If I am not happy with what goes on at Kasten, I will go from there in regards to contacting these guys. If not for insurance issues, I'd have gone to one of those offices first.

I am also going to see how physical therapy goes...that also has to first be approved through insurance. I decided against taking advantage of my best friend's PT. (I have a relative who does my hair...and that can cause problems when I don't like how my hair turns out, so I don't want anything to come between my girlfriend and I).

As for the curve being 32 & 35 and not 20, I am looking forward to getting my surgical records. I cannot imagine we would have been happy with even a 30 degree curve coming out of the surgery. I remember they were very excited by how flexible I was, and I just think that is a number I would remember, as I have told people that number throughout the years. I think the lower curve is worse now because of compensation below the fusion. Not sure on the upper.

One thing I thought funny that showed her lack of knowledge was when we were trying to count vertebrae where there was fusion. She was going to the top of the rod instead of stopping at the hook. Correct me if I'm wrong, but I thought the only part they fused was the part between the hooks. I mentioned it and she just said, "Well, the rod goes higher than that." I didn't argue anymore, but I think she didn't count those higher vertebrae after that.

Well, I need to get back to my dishwasher...you wouldn't believe what I did. I was in a hurry when I was adding "rinse aid" and accidentally put in Ultra Concentrated Dawn dish soap! Eeek! So I have been using a turkey baster and hot water to try diluting it most of the morning. That and a little bit of cooking oil. Can you imagine!! Crazy. The appliance guys I called said we could take off the door and pull out the dispenser and rinse it out a bit if I didn't feel like doing this. This seemed easier...until I sat doing it for 3 hours on and off! Well, now the word is out...I'm a ditz! Anyway, maybe it can give you all a little laugh! My husband sure did laugh! (And that was BEFORE he found out that the fix wasn't going to cost him anything). I guess I am paying the price of my time: Haste makes waste!!!

Thanks, again, . It is so encouraging to hear stories from others who've been there, done that.

Diane VDW

Michigan

Diane,

I'm sure this all was disappointing, frustrating, but there is lessons in this. A doc who is threatened by an informed patient isn't worth your time. Plainly she was inexperienced with post Harrington Rod fusion patients, as some of the things said to you were just plain dismissive, and no patients should ever be made to feel that way. Before I knew what Flatback was, and the various maladies that can befall us post Harrington Rodders, I got told an amazing aray of junk from doctors that plain had no clue about us, and what goes on with us. I would describe pain, they would look at my x-rays, and say based on that, that I couldn't be possibly feeling pain there, because at this level of my spine looked fine and my fusions were good. One plainly told me that he thought I was mental. I'd go to each new doc with hopes of finding the magic cure, or even a diagnosis, and get my hopes dashed, and yet another prescription for some pills to cover the pain of something, just what the something was, they didn't know. So know many of us feel for you, we have been there, and boy it gets my dander up that all these years later, and all the excellent work that has been done, researched, and written about in medical papers, you have come accross this doc that plainly hasn't read or done her homework about post Harrington Rod Spines. For goodness sakes my PCP knows more, and had an indepth conversation with me as a new patient when he found that I had had revision. To have your pain dismissed, and that comment about she know Harrington Rod patients that have no pain, plainly she hasn't read the vast amounts of works written by the best doc's in this field. Amazing, and it always makes me shake my head when I read stories like this.

This is why many of us here recommend that you get opinions from very qualified doc's in this field, saves time and energy and money, and frustration. I do feel that surgery should be a last resort, that if good PT can help, try it, epidural injections, and even medication, if they work for you, more power to you. I was far beyond that point by the time I got to my diagnosis, by that point I was surgical candidate. Just because a doc is a surgeon, and one of the experienced ones spoken about here, doesn't mean there is a rush to surgery. None of them want to cut on you just to be cutting, they will only do surgery if it proven to be whats best for you and your case. I guess for me, and knowing what I know now from my very long quest for answers concerning my developing flatback, go get an opinion from those qualified, I would have gone that route if I KNEW What flatback was, and I had a list of proven docs to seek opinions from. Know the amounts of info out there is vastly better then when I was in the thick of this, what you have at your fingertips is amazing, and just because you happened upon a uninformed doc, doesn't mean you have to again. For me, when I finally got to my doc, and my diagnosis, and validation that what I was feeling did have a name and a fix, was the biggest relief I ever felt. I drove home from that appointment in tears of relief, and that began my journey to get myself better and to educate myself on the post harrington Rod spine, a quest that continues for me despite my excellent outcome from my revisions, not only for myself but for those we help here.

I would say to be really careful with the over the counters, I took them for years for pain( 15 or so) and the ibuprophen type meds can complicate things surgically, as you can incounter more bleeding due to them in surgery. I was worked up extensively after huge blood loss during my decompression, and they could find no other clotting problems other than my years of taking ibuprophen. Might just have been me, but I do know you have to stop these meds prior to surgery. Over the counters can and do help, but they are medication and do have side affects too, and med's should be watched and you too by a doc, a lesson I learned.

Okay, it's easy to say you have tightened hamstrings, and to fault you for not exercising. I got that too. If you can't walk because of pain, how on earth are you going to exercise. My hamstrings were a developement of the flatback stance, shortened by my inability to pull my body upright anymore. It took time after surgery for them to come around, and some PT.

Also we were mostly kids when our Harrington Rods were placed, I wish I remembered all the details perfectly, like I don't remember, or my Mom for that matter, the doc who did my surgery. He was a guy brought in by our doc, doing the newest best stuff at UCSF, and we only met with him twice, once before surgery, and at a six month post op appointment, he was gone right after my surgery to Europe, so in the hospital I never saw him. You also maybe remembering your curves right, if you didn't obtain a complete fusion, you could be progressing, or have progressed. Afterall we were kids and depended on our parents, and some of us got very complete information, and some of us didn't, our parents took that on. Most of us have elderly parents now, and their memory of it all can be faded. And if you are like me, trying to get reports from that time period can be impossible, I tried with UCSF and my Doc in Santa CA, and he was retired and everything was archived and impossible to get. So for her to chastize you for that seems sad and cruel.

So to make a long story short, and if it were me, I'd go see an experienced doc, it will save you tears and frustration, and then you will know just what is up with you, and then you can make decisions. I wish, and boy do I wish, that everyone in every state could have a somewhat local doc to see, those days may come, but right now, it's just not so. If I were you, I'd go see Ondra in Chicago, and maybe Bridwell in St. Louis. We have no reason to say go see these doc's other than they have proven track records with us Flatbackers, but also we have seen and read comments like yours more often than not, and would love you not to go through what many of us did in our quest to find our doc's/surgeons. Selecting a doc is personal work, and it's good to get more than one opinion, and luckily you are here, and have heard the names of doc's that do this work often. I only wish I had known that, when I was going through it, would have saved time and energy and gotten me diagnosised earlier, and with less drama to my soul. These doc's that do this work, are amazing souls, this is tough hard work, and we are gifted by their diligence to gettting us improved. My doc, Anant Kumar, Denver, gave me back a quality of life through his skills and partnership in my care. It takes a team to become better, for me a terrific surgeon, but also myself, I never gave up that it was possible for me to get better, and did the work to make that possible. You have to SEE YOURSELF WELL, selecting a good doc is a good portion of it, but also having a body where healing can take place is key too. My doc loves I'm informed, that I read like crazy, even now six years out from my revision, loves that I have reams of questions each time I see him. I speak to patients of his when they have questions of just what this surgery entails and the recovery. For me, and all the doc's in my life, they love informed patients, and ones who didn't would make me suspect.

Have faith, answers are out there, and one bad apple, is just that, one. I wish you luck in your quest, it tough, but when you find your doc and partner in care you will know it, I sure did.

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