Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 Diane, Sounds like you were well prepared to talk to your doctor and directly affect how your care will work going forward....and thats a great thing! You may already know this, but early or accelerated degeneration of the discs ( and other joints ) below long fusion is now identified as a common problem in our population. I guess its really taken until a lot of us " aged up " and it was recognized as a common late outcome. I have seen it identified as " transition syndrome " or just plain old vanilla " degenerative disc disease " . Let me know if you want me to point you to some of the research in Pubmed. You can have an MRI or a CT scan...and probably will eventually have both. I started with an MRI when they were trying to figure out what was first going on. The metal implants can make the images hard to see....but we all seem to have them, so they must be useful. Let us know when you get your next appointment scheduled. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2008 Report Share Posted December 16, 2008 Hi Cam, My next appointment is at the local Orthopaedic Clinic with Dr. Sara Kane-Smart. It is this Thursday, Dec. 18, (they had a cancellation, so could fit me in). My husband had a really good experience there when he had a herniated disc. He says they will probably do x-rays on site, and they seemed very competent. His herniated disc healed itself without surgery...they gave meds and suggested he wait as surgeries aren't always the best option since success rates were 50/50. So I am optimistic that they will get things going in the right direction and will work with my PCP to give me some good options for working with insurance on a specialist if necessary. I would love it if you would point me to the research on degenerative disc disease/transition syndrome in Pubmed. I really want to understand what is going on so that I am not in the dark when the dr. starts talking. By the way, I attached our family's Christmas photo so you can see who you're talking to. I'm the one in black. With your trained eye you can probably tell that all 3 girls have scoliosis, too. As you can see, the original surgery got me quite straight; I just have the lower back pain. Thanks again for all the support! Diane VDW Diane,Sounds like you were well prepared to talk to your doctor and directly affect how your care will work going forward....and thats a great thing!You may already know this, but early or accelerated degeneration of the discs ( and other joints ) below long fusion is now identified as a common problem in our population. I guess its really taken until a lot of us "aged up" and it was recognized as a common late outcome. I have seen it identified as "transition syndrome" or just plain old vanilla "degenerative disc disease". Let me know if you want me to point you to some of the research in Pubmed.You can have an MRI or a CT scan...and probably will eventually have both. I started with an MRI when they were trying to figure out what was first going on. The metal implants can make the images hard to see....but we all seem to have them, so they must be useful.Let us know when you get your next appointment scheduled.Take Care, Cam ____________________________________________________________ Click here to find the satellite television package that meets your needs. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hi again, The appointment with the local orthopedic special cases Dr. was today (my physical therapist friend said she wasn't a sports medicine dr. as I'd thought since it was the sports medicine clinic). Anyway, it did not go as I'd hoped it would. Perhaps I am too much of a people person and just can't handle brusque treatment (that is how my PT friend described her when I reported how awful the appointment was. She knows her through the medical community). Anyway, I would describe her as someone who feels threatened when you come with information about your situation. The beginning of the appointment was the typical history stuff. She said, " so you're having back pain. " I wanted to cut to the chase, so I said I was, but that it was probably because I'd had a Harrington Rod and Fusion as a teen. I told her that from what I'd learned on-line, many with the HR & F have issues with degenerative disc and stenosis, which sound like some of my symptoms. She cut me off and said we were talking about me not people on line. I said that though it was state of the art at the time, there were a lot of issues that it brought on. She said she saw a lot of people with Harr. Rod and they didn't have pain (I wondered how many, and why they were seeing her if they didn't have pain!). SO I said I had only recently found out about our issues because of what my daughters' scoliosis dr. had said about the problems Harring. patients have. And he is a scoliosis dr., so I'd think he'd know what he was talking about. (at this point I couldn't believe how argumentative she was being, it was so unprofessional!) Then her response was to throw her arms up and say that they I should go have him do surgery on me. I paused. Reached over toward her and patted her desk as though I were soothing a child. " You don't need to be offended, " I told her. I said I was only trying to find out how to deal with my pain. I explained the my kids' dr. was only worked with juvenile scoliosis. Anyway, she got after me for taking naproxen and also ibuprofin. She says, " Why would you do that?! " I said, " Because I am in a good deal of pain. " She wondered why I only took 1 naproxen instead of just taking two. I said I'd heard that it caused liver trouble, so I took one dose of that then supplemented with the Ibuprofin and Tylenol. She said she'd give me an Rx for Mobic. Finally, to the exam. My hamstrings are way too tight. She berated me for not exercising. I said until a couple of months ago I did, but then pain stopped me. Anyway. The X-rays showed that my curve is from L3-T4 or T5. My L3/4 is collapsing on the right side (words like compression and narrowing were said). But she said from the exam that is not where the pain is from. It's lower. I also have sacral torsion. She thinks that and the hamstrings are causing the pain. She doesn't want to do anything about the L3/4 since it is not where the pain is. Also she acted like she thought I was lying or not remembering correctly my curves post surgery. I'd told her around 20 degrees, but my curves now were 32 and 35 degrees. Not even sure I believe her, probably because of my emotions right now. She wants me to go to Physical Therapy 3X /week for 4 weeks. She also said she could see I was " bent on having surgery " so she would give me a referral to Kasten after checking with Priority Health. I told her I wasn't, but want to get the problem fixed. Anyway, my girlfriend PT said that I should do the Ph.Therapy first. She said because often surgeries can cause more problems that it's always last resort. Well, I have to go. I have a 3 hour Christmas practice in shortly. I just wanted to hear from you all if you have any encouragement. I cried so much today, I could really use it! Thanks, Diane VDW Michigan ____________________________________________________________ Save $15 on Flowers and Gifts from FTD! Shop now at http://offers.juno.com/TGL1141/?u=http://www.ftd.com/17007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Diane, OMG! How in the world did you keep your composure in her office. She sounds like a "classic" of those to avoid - God complex, extra super ID, Ilium and Ego, oh I am furious...I've had similar appointments but none with the doc being THAT bad. Hamstrings? That's your problem? Well, I'm over-simplifying her diagnosis, but geesh. I do believe that some of us, we go to a doctor knowing much more about our condition than they do, some of them even never hearing of it and instead of listening or at least being open minded, they choose to wave their supreme White Jacket and scour us hoping they'll never see us again. I wish there was a different term we could use for our pain other than the generic "back pain". Until my problems started, my idea/concept of low back pain was that of a pulled muscle from over-doing it in sports or picking beans in my garden. This issue we have is so not on that level. I wish I knew the right words to say to you to ease the let-down you're probablly feeling. Like so many of us have learned, or are learning, keep searching. I believe if we could sometimes even find a doc who has no prior knowledge or experience with all of this, it would be extremely nice if they'd at least listen, believe what we say, and confer with other professionals and help us get on the right track with someone who can help, you know? We don't have that privelege. Hang in there, G Re: [ ] Re: Todays appointment Hi again,The appointment with the local orthopedic special cases Dr. was today (myphysical therapist friend said she wasn't a sports medicine dr. as I'dthought since it was the sports medicine clinic). Anyway, it did not goas I'd hoped it would. Perhaps I am too much of a people person and justcan't handle brusque treatment (that is how my PT friend described herwhen I reported how awful the appointment was. She knows her through themedical community). Anyway, I would describe her as someone who feelsthreatened when you come with information about your situation. The beginning of the appointment was the typical history stuff. Shesaid, "so you're having back pain." I wanted to cut to the chase, so Isaid I was, but that it was probably because I'd had a Harrington Rod andFusion as a teen. I told her that from what I'd learned on-line, manywith the HR & F have issues with degenerative disc and stenosis, whichsound like some of my symptoms. She cut me off and said we were talkingabout me not people on line. I said that though it was state of the artat the time, there were a lot of issues that it brought on. She said shesaw a lot of people with Harr. Rod and they didn't have pain (I wonderedhow many, and why they were seeing her if they didn't have pain!). SO Isaid I had only recently found out about our issues because of what mydaughters' scoliosis dr. had said about the problems Harring. patientshave. And he is a scoliosis dr., so I'd think he'd know what he wastalking about. (at this point I couldn't believe how argumentative shewas being, it was so unprofessional!) Then her response was to throw herarms up and say that they I should go have him do surgery on me. Ipaused. Reached over toward her and patted her desk as though I weresoothing a child. "You don't need to be offended," I told her. I saidI was only trying to find out how to deal with my pain. I explained themy kids' dr. was only worked with juvenile scoliosis. Anyway, she got after me for taking naproxen and also ibuprofin. Shesays, "Why would you do that?!" I said, "Because I am in a good deal ofpain." She wondered why I only took 1 naproxen instead of just takingtwo. I said I'd heard that it caused liver trouble, so I took one doseof that then supplemented with the Ibuprofin and Tylenol. She said she'dgive me an Rx for Mobic.Finally, to the exam. My hamstrings are way too tight. She berated mefor not exercising. I said until a couple of months ago I did, but thenpain stopped me. Anyway. The X-rays showed that my curve is from L3-T4or T5. My L3/4 is collapsing on the right side (words like compressionand narrowing were said). But she said from the exam that is not wherethe pain is from. It's lower. I also have sacral torsion. She thinksthat and the hamstrings are causing the pain. She doesn't want to doanything about the L3/4 since it is not where the pain is. Also sheacted like she thought I was lying or not remembering correctly my curvespost surgery. I'd told her around 20 degrees, but my curves now were 32and 35 degrees. Not even sure I believe her, probably because of myemotions right now. She wants me to go to Physical Therapy 3X /week for 4 weeks. She alsosaid she could see I was "bent on having surgery" so she would give me areferral to Kasten after checking with Priority Health. I told her Iwasn't, but want to get the problem fixed. Anyway, my girlfriend PT saidthat I should do the Ph.Therapy first. She said because often surgeriescan cause more problems that it's always last resort. Well, I have to go. I have a 3 hour Christmas practice in shortly. Ijust wanted to hear from you all if you have any encouragement. I criedso much today, I could really use it!Thanks,Diane VDWMichigan__________________________________________________________Save $15 on Flowers and Gifts from FTD!Shop now at http://offers.juno.com/TGL1141/?u=http://www.ftd.com/17007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Hello,Therapy is a good start. When my primary care physician got the report about my x-rays, he thought they might recommend surgery right away. But when I visited the Ortho, he wanted me to try therapy and exercise first. (I had also been a good exerciser until the pain started). The therapy has been wonderful. We started with exercises to lengthen my hamstrings and strengthen my core muscles without stressing the lower back. Then we worked up to alternatives to my old weight lifting and cardio routines. I had to stop my favorites like barbell class, step and kickboxing. He also has me temporarily on an NSAID. After about 6 weeks the pain seems to have lessened enormously. I can go almost a whole day feeling pretty decent as long as I do my exercises first thing in the morning. If I feel a twinge during the day, I lay down and do some stretching exercises. My back is pretty tired by the end of the evening, but I no longer have too much pain to sleep. My real problem is when I have to pick-up my two year old on a super cranky day.... like when he refuses to get in the car seat. Sitting in the car and at the dinner table too long seems to be the most uncomfortable times. The Doctor says eventually I will have to fuse the rest of my spine at the bottom, but we are trying to put that off as long as possible. Sometimes I wonder if it would be better to go ahead and have surgery, to get it over with. But the thought of going through all that again, plus recovery, really freaks me out. In two weeks he takes me off the NSAIDs, then we'll see. Try the therapy, you may be surprised at the relief even if it is only temporary. I was. I don't think either of us has time for surgery and recovery right now. Think about slowing down a little as well, you sound so overextended. We need our health to take care of everyone else, don't we - Dyann DiamondFrom: Diane B Van Der Werff <sdvdw@...> Sent: Thursday, December 18, 2008 2:47:19 PMSubject: Re: [ ] Re: Todays appointment Hi again, The appointment with the local orthopedic special cases Dr. was today (my physical therapist friend said she wasn't a sports medicine dr. as I'd thought since it was the sports medicine clinic). Anyway, it did not go as I'd hoped it would. Perhaps I am too much of a people person and just can't handle brusque treatment (that is how my PT friend described her when I reported how awful the appointment was. She knows her through the medical community). Anyway, I would describe her as someone who feels threatened when you come with information about your situation. The beginning of the appointment was the typical history stuff. She said, "so you're having back pain." I wanted to cut to the chase, so I said I was, but that it was probably because I'd had a Harrington Rod and Fusion as a teen. I told her that from what I'd learned on-line, many with the HR & F have issues with degenerative disc and stenosis, which sound like some of my symptoms. She cut me off and said we were talking about me not people on line. I said that though it was state of the art at the time, there were a lot of issues that it brought on. She said she saw a lot of people with Harr. Rod and they didn't have pain (I wondered how many, and why they were seeing her if they didn't have pain!). SO I said I had only recently found out about our issues because of what my daughters' scoliosis dr. had said about the problems Harring. patients have. And he is a scoliosis dr., so I'd think he'd know what he was talking about. (at this point I couldn't believe how argumentative she was being, it was so unprofessional! ) Then her response was to throw her arms up and say that they I should go have him do surgery on me. I paused. Reached over toward her and patted her desk as though I were soothing a child. "You don't need to be offended," I told her. I said I was only trying to find out how to deal with my pain. I explained the my kids' dr. was only worked with juvenile scoliosis. Anyway, she got after me for taking naproxen and also ibuprofin. She says, "Why would you do that?!" I said, "Because I am in a good deal of pain." She wondered why I only took 1 naproxen instead of just taking two. I said I'd heard that it caused liver trouble, so I took one dose of that then supplemented with the Ibuprofin and Tylenol. She said she'd give me an Rx for Mobic. Finally, to the exam. My hamstrings are way too tight. She berated me for not exercising. I said until a couple of months ago I did, but then pain stopped me. Anyway. The X-rays showed that my curve is from L3-T4 or T5. My L3/4 is collapsing on the right side (words like compression and narrowing were said). But she said from the exam that is not where the pain is from. It's lower. I also have sacral torsion. She thinks that and the hamstrings are causing the pain. She doesn't want to do anything about the L3/4 since it is not where the pain is. Also she acted like she thought I was lying or not remembering correctly my curves post surgery. I'd told her around 20 degrees, but my curves now were 32 and 35 degrees. Not even sure I believe her, probably because of my emotions right now. She wants me to go to Physical Therapy 3X /week for 4 weeks. She also said she could see I was "bent on having surgery" so she would give me a referral to Kasten after checking with Priority Health. I told her I wasn't, but want to get the problem fixed. Anyway, my girlfriend PT said that I should do the Ph.Therapy first. She said because often surgeries can cause more problems that it's always last resort. Well, I have to go. I have a 3 hour Christmas practice in shortly. I just wanted to hear from you all if you have any encouragement. I cried so much today, I could really use it! Thanks, Diane VDW Michigan ____________ _________ _________ _________ _________ _________ _ Save $15 on Flowers and Gifts from FTD! Shop now at http://offers. juno.com/ TGL1141/? u=http:// www.ftd.com/ 17007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 18, 2008 Report Share Posted December 18, 2008 Diane, In my opinion, people with personalities like that ought to never be allowed to practice medicine. I like doctors who work WITH me and discuss things with respect versus those with a god complex. I think you did a fantastic job of keeping your cool with her, and I hope that you never go see her again Hang in there! > > Hi again, > > The appointment with the local orthopedic special cases Dr. was today (my > physical therapist friend said she wasn't a sports medicine dr. as I'd > thought since it was the sports medicine clinic). Anyway, it did not go > as I'd hoped it would. Perhaps I am too much of a people person and just > can't handle brusque treatment (that is how my PT friend described her > when I reported how awful the appointment was. She knows her through the > medical community). Anyway, I would describe her as someone who feels > threatened when you come with information about your situation. > > The beginning of the appointment was the typical history stuff. She > said, " so you're having back pain. " I wanted to cut to the chase, so I > said I was, but that it was probably because I'd had a Harrington Rod and > Fusion as a teen. I told her that from what I'd learned on-line, many > with the HR & F have issues with degenerative disc and stenosis, which > sound like some of my symptoms. She cut me off and said we were talking > about me not people on line. I said that though it was state of the art > at the time, there were a lot of issues that it brought on. She said she > saw a lot of people with Harr. Rod and they didn't have pain (I wondered > how many, and why they were seeing her if they didn't have pain!). SO I > said I had only recently found out about our issues because of what my > daughters' scoliosis dr. had said about the problems Harring. patients > have. And he is a scoliosis dr., so I'd think he'd know what he was > talking about. (at this point I couldn't believe how argumentative she > was being, it was so unprofessional!) Then her response was to throw her > arms up and say that they I should go have him do surgery on me. I > paused. Reached over toward her and patted her desk as though I were > soothing a child. " You don't need to be offended, " I told her. I said > I was only trying to find out how to deal with my pain. I explained the > my kids' dr. was only worked with juvenile scoliosis. > > Anyway, she got after me for taking naproxen and also ibuprofin. She > says, " Why would you do that?! " I said, " Because I am in a good deal of > pain. " She wondered why I only took 1 naproxen instead of just taking > two. I said I'd heard that it caused liver trouble, so I took one dose > of that then supplemented with the Ibuprofin and Tylenol. She said she'd > give me an Rx for Mobic. > > Finally, to the exam. My hamstrings are way too tight. She berated me > for not exercising. I said until a couple of months ago I did, but then > pain stopped me. Anyway. The X-rays showed that my curve is from L3-T4 > or T5. My L3/4 is collapsing on the right side (words like compression > and narrowing were said). But she said from the exam that is not where > the pain is from. It's lower. I also have sacral torsion. She thinks > that and the hamstrings are causing the pain. She doesn't want to do > anything about the L3/4 since it is not where the pain is. Also she > acted like she thought I was lying or not remembering correctly my curves > post surgery. I'd told her around 20 degrees, but my curves now were 32 > and 35 degrees. Not even sure I believe her, probably because of my > emotions right now. > > She wants me to go to Physical Therapy 3X /week for 4 weeks. She also > said she could see I was " bent on having surgery " so she would give me a > referral to Kasten after checking with Priority Health. I told her I > wasn't, but want to get the problem fixed. Anyway, my girlfriend PT said > that I should do the Ph.Therapy first. She said because often surgeries > can cause more problems that it's always last resort. > > Well, I have to go. I have a 3 hour Christmas practice in shortly. I > just wanted to hear from you all if you have any encouragement. I cried > so much today, I could really use it! > > Thanks, > Diane VDW > Michigan > > > > ____________________________________________________________ > Save $15 on Flowers and Gifts from FTD! > Shop now at http://offers.juno.com/TGL1141/? u=http://www.ftd.com/17007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Hi Everyone, Thanks so much for the encouragement about yesterday's discouraging appointment. I was in a hurry to write last night, so I forgot to mention the most offensive part of the whole appointment. When I gave her the general issues facing post harrington patients, she responded vehemently that in her experience the reason harrington rod patients experience trouble later on was not faulty hardware, but rather that they were so " deformed " and in pain before. I felt like she'd slapped me in the face (I guess that's my pride there). I countered that I'd been at 30 degree curves and jumped in 1 month's time to 50 degree curves with no pain, but then had surgery. She leaned forward and said, " I'd call 50 degrees deformed. " You had to be there. I was appalled. I went to my music practice last night. An older dr. I know was there to drive his wife. He and I have discussed my issues before since he is also my Sunday school teacher. Anyway, he just shook his head and told me she was out of line. He said it was all her pride. He agreed that Physical Therapy was a good step, though. He had had some real success for back pain using PT. Oh, I thought my PT friends description of why Phys. Therapy works for some. She said it is like a " stuck drawer " . By manipulating things around, sometimes you can get the " drawer " unstuck. In the same way, manipulating all those little bones and joints can fix things up. Despite my friend's advice to the contrary, though, I am still going to go to Dr. Kasten if my insurance approves it. My friend thought I should just go the least invasive first. I'd like to see if Kasten says the same or if he thinks I still need more evaluation like a CAT scan or MRI to be sure of everything that is going on. Well, again, thanks to all of you. This journey is much easier because of you! Diane VDW Michigan ____________________________________________________________ Save $15 on Flowers and Gifts from FTD! Shop now at http://offers.juno.com/TGL1141/?u=http://www.ftd.com/17007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Hi Dyann, I copied part of your letter (below), so I could respond. Thanks for the rest of your letter as well. I think I will try the therapy. Maybe it will help for me like it did for you! "Think about slowing down a little as well, you sound so overextended. We need our health to take care of everyone else, don't we :)" - Dyann Diamond. You are absolutely right! I am notorious for taking on more than I can handle. Christmas Program? Sure I'd love to play keyboard! Oh, there are several 3 hour practices? Oh, I could handle that...RIGHT! Well, the program is nearly here...then, as I always do, I swear off any big commitments...until the next one comes. Actually, this season I did scale back my Christmas cards and said "no" to doing a devotional at a brunch...so I could be doing more, I guess. I also called today a "Snow Day" for school even before I heard all the area schools were cancelled. I was so drained from yesterday's appointment and the Christmas Practice that I knew I needed to sleep in. The kids were thrilled that their "slavedriver" mother would actually give them an extra day off. Thanks for caring for me, Dyann. Sometimes I forget that I need to take care of myself so I can help the family. I am blessed to have some very helpful kids, but they still need me to be on top of things. Blessings, Diane ____________________________________________________________ Save $15 on Flowers and Gifts from FTD!Shop now at www.ftd.com/17007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 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. Re: [ ] Re: Todays appointment Hi again,The appointment with the local orthopedic special cases Dr. was today (myphysical therapist friend said she wasn't a sports medicine dr. as I'dthought since it was the sports medicine clinic). Anyway, it did not goas I'd hoped it would. Perhaps I am too much of a people person and justcan't handle brusque treatment (that is how my PT friend described herwhen I reported how awful the appointment was. She knows her through themedical community). Anyway, I would describe her as someone who feelsthreatened when you come with information about your situation. The beginning of the appointment was the typical history stuff. Shesaid, "so you're having back pain." I wanted to cut to the chase, so Isaid I was, but that it was probably because I'd had a Harrington Rod andFusion as a teen. I told her that from what I'd learned on-line, manywith the HR & F have issues with degenerative disc and stenosis, whichsound like some of my symptoms. She cut me off and said we were talkingabout me not people on line. I said that though it was state of the artat the time, there were a lot of issues that it brought on. She said shesaw a lot of people with Harr. Rod and they didn't have pain (I wonderedhow many, and why they were seeing her if they didn't have pain!). SO Isaid I had only recently found out about our issues because of what mydaughters' scoliosis dr. had said about the problems Harring. patientshave. And he is a scoliosis dr., so I'd think he'd know what he wastalking about. (at this point I couldn't believe how argumentative shewas being, it was so unprofessional!) Then her response was to throw herarms up and say that they I should go have him do surgery on me. Ipaused. Reached over toward her and patted her desk as though I weresoothing a child. "You don't need to be offended," I told her. I saidI was only trying to find out how to deal with my pain. I explained themy kids' dr. was only worked with juvenile scoliosis. Anyway, she got after me for taking naproxen and also ibuprofin. Shesays, "Why would you do that?!" I said, "Because I am in a good deal ofpain." She wondered why I only took 1 naproxen instead of just takingtwo. I said I'd heard that it caused liver trouble, so I took one doseof that then supplemented with the Ibuprofin and Tylenol. She said she'dgive me an Rx for Mobic.Finally, to the exam. My hamstrings are way too tight. She berated mefor not exercising. I said until a couple of months ago I did, but thenpain stopped me. Anyway. The X-rays showed that my curve is from L3-T4or T5. My L3/4 is collapsing on the right side (words like compressionand narrowing were said). But she said from the exam that is not wherethe pain is from. It's lower. I also have sacral torsion. She thinksthat and the hamstrings are causing the pain. She doesn't want to doanything about the L3/4 since it is not where the pain is. Also sheacted like she thought I was lying or not remembering correctly my curvespost surgery. I'd told her around 20 degrees, but my curves now were 32and 35 degrees. Not even sure I believe her, probably because of myemotions right now. She wants me to go to Physical Therapy 3X /week for 4 weeks. She alsosaid she could see I was "bent on having surgery" so she would give me areferral to Kasten after checking with Priority Health. I told her Iwasn't, but want to get the problem fixed. Anyway, my girlfriend PT saidthat I should do the Ph.Therapy first. She said because often surgeriescan cause more problems that it's always last resort. Well, I have to go. I have a 3 hour Christmas practice in shortly. Ijust wanted to hear from you all if you have any encouragement. I criedso much today, I could really use it!Thanks,Diane VDWMichigan__________________________________________________________Save $15 on Flowers and Gifts from FTD!Shop now at http://offers.juno.com/TGL1141/?u=http://www.ftd.com/17007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Hi Diane, Who was it that said, " pride cometh before the fall " . I think the doctor you saw was full of pride. Obviously, for whatever reason she treated you with disregard and as says, there is nothing more frustrating than trying to explain what is going on when a doc is shutting you down. Face it, it hurts our feelings. So now, then here we are in pain, in a difficult situation trying to explain our bodies, with our feelings hurt and probably madder than a hornet at that point for being shut down! Sound familiar? I don't believe many surgeons have good bedside manner. It is a learned trait. BUT I will say, PT is a tremendous help and can postpone surgery for as long as possible. Sometimes long enough for some but then not for others. What I am trying to say, is, it is worth a try. Would I still seek out an expert in flatback, revision? yes, I would, but in the meantime see if PT would help relieve some of your symptoms. Keep your chin up, you are on the road to discovery, what will work, what will not for you. > > 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. > > > Re: [ ] Re: Todays appointment > > > Hi again, > > The appointment with the local orthopedic special cases Dr. was today (my > physical therapist friend said she wasn't a sports medicine dr. as I'd > thought since it was the sports medicine clinic). Anyway, it did not go > as I'd hoped it would. Perhaps I am too much of a people person and just > can't handle brusque treatment (that is how my PT friend described her > when I reported how awful the appointment was. She knows her through the > medical community). Anyway, I would describe her as someone who feels > threatened when you come with information about your situation. > > The beginning of the appointment was the typical history stuff. She > said, " so you're having back pain. " I wanted to cut to the chase, so I > said I was, but that it was probably because I'd had a Harrington Rod and > Fusion as a teen. I told her that from what I'd learned on-line, many > with the HR & F have issues with degenerative disc and stenosis, which > sound like some of my symptoms. She cut me off and said we were talking > about me not people on line. I said that though it was state of the art > at the time, there were a lot of issues that it brought on. She said she > saw a lot of people with Harr. Rod and they didn't have pain (I wondered > how many, and why they were seeing her if they didn't have pain!). SO I > said I had only recently found out about our issues because of what my > daughters' scoliosis dr. had said about the problems Harring. patients > have. And he is a scoliosis dr., so I'd think he'd know what he was > talking about. (at this point I couldn't believe how argumentative she > was being, it was so unprofessional!) Then her response was to throw her > arms up and say that they I should go have him do surgery on me. I > paused. Reached over toward her and patted her desk as though I were > soothing a child. " You don't need to be offended, " I told her. I said > I was only trying to find out how to deal with my pain. I explained the > my kids' dr. was only worked with juvenile scoliosis. > > Anyway, she got after me for taking naproxen and also ibuprofin. She > says, " Why would you do that?! " I said, " Because I am in a good deal of > pain. " She wondered why I only took 1 naproxen instead of just taking > two. I said I'd heard that it caused liver trouble, so I took one dose > of that then supplemented with the Ibuprofin and Tylenol. She said she'd > give me an Rx for Mobic. > > Finally, to the exam. My hamstrings are way too tight. She berated me > for not exercising. I said until a couple of months ago I did, but then > pain stopped me. Anyway. The X-rays showed that my curve is from L3-T4 > or T5. My L3/4 is collapsing on the right side (words like compression > and narrowing were said). But she said from the exam that is not where > the pain is from. It's lower. I also have sacral torsion. She thinks > that and the hamstrings are causing the pain. She doesn't want to do > anything about the L3/4 since it is not where the pain is. Also she > acted like she thought I was lying or not remembering correctly my curves > post surgery. I'd told her around 20 degrees, but my curves now were 32 > and 35 degrees. Not even sure I believe her, probably because of my > emotions right now. > > She wants me to go to Physical Therapy 3X /week for 4 weeks. She also > said she could see I was " bent on having surgery " so she would give me a > referral to Kasten after checking with Priority Health. I told her I > wasn't, but want to get the problem fixed. Anyway, my girlfriend PT said > that I should do the Ph.Therapy first. She said because often surgeries > can cause more problems that it's always last resort. > > Well, I have to go. I have a 3 hour Christmas practice in shortly. I > just wanted to hear from you all if you have any encouragement. I cried > so much today, I could really use it! > > Thanks, > Diane VDW > Michigan > > __________________________________________________________ > Save $15 on Flowers and Gifts from FTD! > Shop now at http://offers.juno.com/TGL1141/? u=http://www.ftd.com/17007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Dear , Wow! After a day like you've had today you still took time to encourage me! You're a sweetheart! Thank you! I pray your insurance appeal will go well. Thank you again, Diane Hi Diane,Who was it that said, "pride cometh before the fall". I think the doctor you saw was full of pride. Obviously, for whatever reason she treated you with disregard and as says, there is nothing more frustrating than trying to explain what is going on when a doc is shutting you down. Face it, it hurts our feelings. So now, then here we are in pain, in a difficult situation trying to explain our bodies, with our feelings hurt and probably madder than a hornet at that point for being shut down! Sound familiar? I don't believe manysurgeons have good bedside manner. It is a learned trait. BUT I will say, PT is a tremendous help and can postpone surgery for as long as possible. Sometimes long enough for some but then not for others. What I am trying to say, is, it is worth a try. Would I still seek out an expert in flatback, revision? yes, I would, but in the meantime see if PT would help relieve some of your symptoms. Keep your chin up, you are on the road to discovery, what will work, what will not for you. ____________________________________________________________ Earn your associate's criminal justice degree and start your career training today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 Diane, your needs are just as important as anyone else’s. And we certainly don’t want to be belittled or berated when we go for help. This doctor’s attitude was unacceptable. I think we’re programmed to kowtow a bit to doctors given our view of them as professionals who have much more specialized learning than perhaps we have. Something similar occurred to me when I first went for help. This was several years ago. I didn’t know the doctor; I simply walked into the man’s office for my appointment. He seemed angry from the start. I tried several approaches with him thinking he was having a bad and day and maybe just needed a smile or some encouragement. Everyone has a bad day now and then so I thought maybe it was just his turn. Granted, he was way over the line but I was willing to cut him some slack. However as time went on, nothing I said helped. In fact, no matter what I said, he responded with sarcasm, irritation, or implied that I didn’t know what I was talking about. Similar to your experience with the doctor today. Finally, mid-way through the appointment, I held up my hand and said, “Stop.” After telling him that his behavior and comments to me were totally unacceptable and wholly unprofessional, there was no way that I’d ever have him for a doctor. I told him that I had sense enough to know my own body far better than he, and since he appeared to have so little control over his temper, behavior, his attitude or his mouth, then he definitely wouldn’t be doing surgery on my body. He needed to regard the trust of patients as a privilege, not send them away hurting more deeply than when they came to him for help. As I walked out of his office I looked back to see him wide-eyed and open-mouthed. It didn’t make me happy; I was hurting and worried and needed help. I left his office feeling hopeless and, absurdly, doubting myself. What I wished, however, is that he wouldn’t do that to anyone again. I don’t know what ever happened to him. And I would handle such a situation the same way again should a doctor—“professional” or not—one who is merely a fellow human being with only a different set of skills, behave so unkindly and unprofessionally. Of course we want to be kind, but there are times when someone may need to hear a truth they don’t want to hear. Later saw the doctor I ended up going with. What a blessing. You keep searching; you’ll find the doctor who will treat you with respect and listen to you. The one you saw today has no business being in the business—at least until or unless she has a change of heart. __________________________________ Hi again, > > The appointment with the local orthopedic special cases Dr. was today (my > physical therapist friend said she wasn't a sports medicine dr. as I'd > thought since it was the sports medicine clinic). Anyway, it did not go > as I'd hoped it would. Perhaps I am too much of a people person and just > can't handle brusque treatment (that is how my PT friend described her > when I reported how awful the appointment was. She knows her through the > medical community). Anyway, I would describe her as someone who feels > threatened when you come with information about your situation. > > The beginning of the appointment was the typical history stuff. She > said, " so you're having back pain. " I wanted to cut to the chase, so I > said I was, but that it was probably because I'd had a Harrington Rod and > Fusion as a teen. I told her that from what I'd learned on-line, many > with the HR & F have issues with degenerative disc and stenosis, which > sound like some of my symptoms. She cut me off and said we were talking > about me not people on line. I said that though it was state of the art > at the time, there were a lot of issues that it brought on. She said she > saw a lot of people with Harr. Rod and they didn't have pain (I wondered > how many, and why they were seeing her if they didn't have pain!). SO I > said I had only recently found out about our issues because of what my > daughters' scoliosis dr. had said about the problems Harring. patients > have. And he is a scoliosis dr., so I'd think he'd know what he was > talking about. (at this point I couldn't believe how argumentative she > was being, it was so unprofessional!) Then her response was to throw her > arms up and say that they I should go have him do surgery on me. I > paused. Reached over toward her and patted her desk as though I were > soothing a child. " You don't need to be offended, " I told her. I said > I was only trying to find out how to deal with my pain. I explained the > my kids' dr. was only worked with juvenile scoliosis. > > Anyway, she got after me for taking naproxen and also ibuprofin. She > says, " Why would you do that?! " I said, " Because I am in a good deal of > pain. " She wondered why I only took 1 naproxen instead of just taking > two. I said I'd heard that it caused liver trouble, so I took one dose > of that then supplemented with the Ibuprofin and Tylenol. She said she'd > give me an Rx for Mobic. > > Finally, to the exam. My hamstrings are way too tight. She berated me > for not exercising. I said until a couple of months ago I did, but then > pain stopped me. Anyway. The X-rays showed that my curve is from L3-T4 > or T5. My L3/4 is collapsing on the right side (words like compression > and narrowing were said). But she said from the exam that is not where > the pain is from. It's lower. I also have sacral torsion. She thinks > that and the hamstrings are causing the pain. She doesn't want to do > anything about the L3/4 since it is not where the pain is. Also she > acted like she thought I was lying or not remembering correctly my curves > post surgery. I'd told her around 20 degrees, but my curves now were 32 > and 35 degrees. Not even sure I believe her, probably because of my > emotions right now. > > She wants me to go to Physical Therapy 3X /week for 4 weeks. She also > said she could see I was " bent on having surgery " so she would give me a > referral to Kasten after checking with Priority Health. I told her I > wasn't, but want to get the problem fixed. Anyway, my girlfriend PT said > that I should do the Ph.Therapy first. She said because often surgeries > can cause more problems that it's always last resort. > > Well, I have to go. I have a 3 hour Christmas practice in shortly. I > just wanted to hear from you all if you have any encouragement. I cried > so much today, I could really use it! > > Thanks, > Diane VDW > Michigan Quote Link to comment Share on other sites More sharing options...
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