Guest guest Posted June 20, 2007 Report Share Posted June 20, 2007 Thanks for responding - I was beginning to think my post didn't go through as no one was responding to me. Yes, Dr. Hey will be there for my next followup. I don't mind the brace. I wore a corset with metal bars in the back for almost a year when I was first diagnosed with flatback 7 years ago. But I had to take literature with me to show that back surgeon what flatback was and he also told me I didn't need surgery. I never went back to him, needless to say. I kept up to date in this forum and went to a different back surgeon (Dr. Reeg) last year and finally ended up with Dr. Hey as he was mentioned in this forum and also a member of SRS. But back to the question - I like the brace for support and it squeezes my stomach enough that I don't eat as much! They want me to build up my leg strength by walking, recumbent bike, or elliptical machine (which I started yesterday going 1/2 mile on my machine). I will also use my Total Gym to do leg push-offs (squats laying on the board) and other exercises. They said I can do lateral pull downs with my arms as long as I keep control of it and don't let the weights jerk down and pull my back. I'm curious what they can teach me for core strengthening because I doubt I can do crunches. I will let you know what I learn once I start going. Peggy [ ] Re: 6 week follow-up Peggy,Will Dr. Hey be there for your next checkup? Did you end up driving by yourself? How do you like your brace? I hear some people say that they absolutely hate it, while others love it and feel more comfortable with it on than off.Congrats on already seeing the fusion healing That's great to hear!You said what types of PT they warned you to stay away from, but could you describe what they DO want you to work on there with lower extremity strengthening?Congrats on another great update >> Dr. Hey is in Italy so I saw the 2 physician assistants today. Jaclyn said I was in perfect alignment when I stood up and she viewed me from the side - head over the shoulders and aligned with the hips. My x-rays showed that the bone graft is starting to fuse over the instrumentation - it looks like a cloud in the x-rays next to the rods. My notes say that the fusion mass looks excellent. She removed the large plastic pad from the front of my brace. I am to continue wearing the brace until my next appt on August 17. Now the brace is more like wearing a velcro corset. My restrictions are NO deep bending, NO severe twisting, and NO lifting greater than 15 pounds. She said the way I squat to pick things up off the floor is fine. I can start physical therapy but she specified they were not to work on hamstring flexibility or anything else that pulls on the hips - it should focus on lower extremity strengthening and walking. She gave me a Rx for 20 mg OxyContin so I can get off the 40s and then we will taper to the 10s and off completely. She said the numbness in my leg was a good thing as it shows the nerves are healing. I am very pleased with my report!!! > > Peggy> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 I knew you were going to Denmark but I didn't realize you were moving there! Wow! Good luck with the move! Peggy [ ] Re: 6 week follow-up Peggy,I am sorry I haven't had a chance to write much lately. I am barely keeping up with reading the board to see how everyone is doing. I am in the final throws of packing up to move to Denmark and it is challenging. So to you (and everyone) I apologize if I don't get much time "on the board". When I get moved in and reconnected to the internet I hope I will be here as much as ever.Please know how happy I am to hear that you are progressing well. It is good to know that things are starting to grow over. Please remember that starting to grow in is a long way from solid fusion and you really won't lose anything by waiting until you have a solid fusion to push the limits of your new spine. Really. I speak from experience!I know you felt that you had to drive to this appointment. I also know that my surgeon specifically cautioned against highway driving until after 12 weeks because he feels the risks of needing to twist in the drivers seat to verify traffic is great....and because the risk of being involved in a high speed collision is too high. I say this now not because I expect it to change your mind about driving...but to remind others reading here that they should not assume that your rcovery experience should be extrapolated to their own....expecially if it is in contrast to the advice of their own doctors.Please be careful. You are still plenty fragile!Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 My surgeon definitely seems "more relaxed" than the others. Maybe he adds super glue and is more confident his work will stay in place! Or maybe it's just his experience with this surgery and his patient's outcomes. Or possibly the other surgeons are overly cautious just to be super safe. If I had gone to Dr. Reeg I would have been put in a TLSO and still housebound at 8 weeks. I wouldn't have been able to drive or go to NY for my daughter's graduation. But he recommended a 5-hour surgery with more extensive instrumentation than Dr. Hey did and that threw up a red flag. Each surgeon has their own reasons for things. I think some are overly cautious because they have no confidence in us to use common sense regarding what we can and cannot do. I sometimes get the feeling that people are waiting to see if my fusion collapses because my surgeon is so relaxed with his restrictions. Peggy Peggy [ ] Re: 6 week follow-up Hi again Peggy,So glad that your appt. went so well! Wasn't it great when they pointed out where the fusion masses are! I loved seeing that. Likea big 'whew'!Glad your not having any problems brace wise too. Hated mine, got it tweaked to make it better, made it worse. I ditched the thing after 3 mo. Just was extra careful.Was just so surprised to see the exercises they say you can do! WOW!! I think your the first I have seen who has been allowed todo so much so soon. Wishing you continued success with such a good recovery. And your leg will get stronger, just give it a little time. > >> > Dr. Hey is in Italy so I saw the 2 physician assistants today. > Jaclyn said I was in perfect alignment when I stood up and she > viewed me from the side - head over the shoulders and aligned with > the hips. My x-rays showed that the bone graft is starting to fuse > over the instrumentation - it looks like a cloud in the x-rays next > to the rods. My notes say that the fusion mass looks excellent. > She removed the large plastic pad from the front of my brace. I am > to continue wearing the brace until my next appt on August 17. Now > the brace is more like wearing a velcro corset. My restrictions are > NO deep bending, NO severe twisting, and NO lifting greater than 15 > pounds. She said the way I squat to pick things up off the floor is > fine. I can start physical therapy but she specified they were not > to work on hamstring flexibility or anything else that pulls on the > hips - it should focus on lower extremity strengthening and > walking. She gave me a Rx for 20 mg OxyContin so I can get off the > 40s and then we will taper to the 10s and off completely. She said > the numbness in my leg was a good thing as it shows the nerves are > healing. I am very pleased with my report!!! > > > > Peggy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2007 Report Share Posted June 21, 2007 HI Peggy, I don't think anyone is waiting to see if your fusion collapses because your surgeon is so relaxed with his restrictions, as you put it. First, some of us have been around here a very long time and have seen people do real damage by doing too much too soon. So, they only speak out of concern for you. Sometimes, it seems that you do things even beyond what your doc has specifically said you could do. Like driving for 8 hours in one day. The only reason some of us have suggested you hold back a bit, is out of concern for you. Bonnie [ ] Re: 6 week follow-up Hi again Peggy,So glad that your appt. went so well! Wasn't it great when they pointed out where the fusion masses are! I loved seeing that. Likea big 'whew'!Glad your not having any problems brace wise too. Hated mine, got it tweaked to make it better, made it worse. I ditched the thing after 3 mo. Just was extra careful.Was just so surprised to see the exercises they say you can do! WOW!! I think your the first I have seen who has been allowed todo so much so soon. Wishing you continued success with such a good recovery. And your leg will get stronger, just give it a little time. > >> > Dr. Hey is in Italy so I saw the 2 physician assistants today. > Jaclyn said I was in perfect alignment when I stood up and she > viewed me from the side - head over the shoulders and aligned with > the hips. My x-rays showed that the bone graft is starting to fuse > over the instrumentation - it looks like a cloud in the x-rays next > to the rods. My notes say that the fusion mass looks excellent. > She removed the large plastic pad from the front of my brace. I am > to continue wearing the brace until my next appt on August 17. Now > the brace is more like wearing a velcro corset. My restrictions are > NO deep bending, NO severe twisting, and NO lifting greater than 15 > pounds. She said the way I squat to pick things up off the floor is > fine. I can start physical therapy but she specified they were not > to work on hamstring flexibility or anything else that pulls on the > hips - it should focus on lower extremity strengthening and > walking. She gave me a Rx for 20 mg OxyContin so I can get off the > 40s and then we will taper to the 10s and off completely. She said > the numbness in my leg was a good thing as it shows the nerves are > healing. I am very pleased with my report!!! > > > > Peggy> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Sorry, it must be that time of the month which I never know when it's coming because I had a hysterectomy. I have felt that since I didn't go to Rand or Bridwell and went to someone no one is familiar with, I'm held in a different light and I'm watched carefully. I guess I should expect that because you are wondering if Dr. Hey knows what he doing, and I feel he is just as good as the others, his name just isn't well known yet. But 3 of us have gone to him so maybe Dr. Hey will become mentioned as much as the others. I follow my instructions but I haven't been given as many as y'all have. I was given no restrictions whatsoever on driving - just to start when I was off narcotics but that is because they knock most people out. I was operating on narcotics before surgery - driving and working a full-time job - so it has been nothing for me to drive. Before surgery they told me I could drive at 2 weeks if I felt up to it. I waited until 4 weeks before I drove. My only restrictions right now are to wear the brace for the next 6 weeks, no severe bending, no twisting, and no lifting over 15 pounds. I know this is extremely different from everyone else but it is all I have to go by. Sometimes the concerns shown come off as being judgmental instead of caring. It is so hard to tell how a person means something when you can't hear their voice. Do you know what mean? Peggy [ ] Re: 6 week follow-up Peggy,I am sure no one is expecting your fusion to collapse. The whole point of this group is to share information. Since the information you have seems somewhat different from what most of us have for restrictions it is noteworthy and thus contrasted and commented upon.We each have our own unique healing timelines and challenges. 6 weeks out is way too soon to draw any conclusions about anything. We all want nothing but the best for each member and wish not one of us ever had to go through this again. It is complete anguish for all of us when one of us faces a re-revision. So as good as you feel, I have to say it again, be careful and take it slow and easy!Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Dear Peggy, Choosing a surgeon is a personal decision. I went with a local doc, that didn't get any play on the boards, but did have a good reputation locally for big scoliosis surgeries, and consulted Bridwell and Lenke on my case. I have never regreted my decision to go with him, Dr. Kumar. I do know that people do follow my progress, as they will yours, because we went with unheard of names in the Flatback field on the boards. Know there are a lot of doc's doing this work that don't get the " rep" online as the big names, and there could be many reasons for that. Who knows the percentage of patients that go online when facing a major medical decision, probably a lot fewer than you would think. Maybe the population of a particular doc is older, as with mine, and they just don't get online to have a conversation with others about medical stuff. The doc's names we see most often are connected with major medical centers that have done a ton of these surgeries, names and faces of these members we have gotten to know, as we have supported them through their recoveries. A Few of us have been around these boards for years now, me about seven, and while there are a few surgeons that are mentioned for one or two patients having surgery with them, I believe that most members when looking for a surgeon look for experience, and a number of pateints they can talk to in conversation here. I can't fault anyone for going with the big names talked about here, they have a great deal of patients you can talk to, with varifiable results, and tons of experience, all good things when going through a surgery of this gravity. So when you and I post how we are doing, it will be looked at as" maybe here is another doc to look at, closer to home, but lets see how they do". Know you are early in the healing process, and I doubt many would jump at going to Dr. Hey just because you are so early in your recovery, but his name will be held in peoples thoughts. You can't judge a recovery, and the results of it, for probably years, and I'm about to hit five years, and I can truly probably say as of now I have had an excellent recovery. Even with the biggest names in this field of surgery complication do come up, sometimes through missteps done by patients, and sometimes they just happen, things don't fuse, hardware comes loose. I had it happen to me, and I have held the hands of more than one member over the phone as they have gone into a second revision, no one, and I mean NO ONE would wish that upon another member, so get that out of your head. Restrictions are for your safety and the safety of those precious fusions that you are developing. My doc had few restrictions too, I was driving much earlier than most members here. I didn't drive as far as you just did though, mine was all local for a good long time. I feel for you, I believe some of these decisions you have made in recovery are due to less than optimum support, like driving so far to your appointment. I wish that for you support would be more free flowing, I was lucky that way, people wouldn't let me do too much, even when I would try. Since I have done this twice, I'm very protective of my good outcome, it's the most amazing gift I ever been given. Baby myself, sure in tons of ways, since I want this to be my last surgery, and I want to be as good as I am now til I'm an old lady. I have the perspective you don't have yet, a gift time has given me, you just want to get back to life a quickly as you can, but believe me, take your time and heal well, it's the best gift you can give yourself! [ ] Re: 6 week follow-up Peggy,I am sure no one is expecting your fusion to collapse. The whole point of this group is to share information. Since the information you have seems somewhat different from what most of us have for restrictions it is noteworthy and thus contrasted and commented upon.We each have our own unique healing timelines and challenges. 6 weeks out is way too soon to draw any conclusions about anything. We all want nothing but the best for each member and wish not one of us ever had to go through this again. It is complete anguish for all of us when one of us faces a re-revision. So as good as you feel, I have to say it again, be careful and take it slow and easy!Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Thank you, . Everyone has to choose who is best for them, and who they trust and have confidence in. I didn't have confidence with Dr. Reeg so I moved on. I did have confidence in Dr. Hey, and the reputation of Duke around here is astounding. I was able to go to his website and read about similar surgeries, etc. But I do think there are many people on this forum reluctant to speak about their surgeon. If you watch the newbies that come on they are immediately challenged about their surgeon as to whether or not he can possibly know what he is doing and the top guns are pushed as the only ones with experience. Not that they shouldn't be mentioned, but I think we need to focus on the newbies and give them the questions they need to ask their surgeon to determine if he is qualified for revision surgery, and not come across that their surgeon is unqualified just because we've never heard of him/her. There are probably several experienced surgeons that we haven't heard of yet. I think Dr. Hey is one of the tops, unheard of, but not necessarily the best. It wouldn't be possible to choose just one surgeon as the absolute best. You are right that I have done things due to a lack of support and out of necessity. But there are still things I don't do. I called the neighbor yesterday and asked him to please come take my trash to the dump while my husband is not home. I'm not going to attempt to throw the trash bags up into the dumpster - that would be a big NO NO. Now that my husband is gone, the church has forgotten about me and the fact there are things I still cannot do. So I'll just have to keep calling people for help when I need it. Peggy [ ] Re: 6 week follow-up Peggy,I am sure no one is expecting your fusion to collapse. The whole point of this group is to share information. Since the information you have seems somewhat different from what most of us have for restrictions it is noteworthy and thus contrasted and commented upon.We each have our own unique healing timelines and challenges. 6 weeks out is way too soon to draw any conclusions about anything. We all want nothing but the best for each member and wish not one of us ever had to go through this again. It is complete anguish for all of us when one of us faces a re-revision. So as good as you feel, I have to say it again, be careful and take it slow and easy!Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2007 Report Share Posted June 22, 2007 Dear Peggy, I'm lucky, I live very near a major city, where big city medicine is available to me and my family. So when I say I went with local doc's, Kumar and O'Brien, both are well known, and in the case of O'Brien affiliated with University of Colorado. Many newbies don't have that level of care available to them locally, they are seeing the local Ortho, not always even one that specializes in the spine even. You must be careful to search out the best doc's possible for this complicated surgery. I was lucky to have these two doc's available to me in Denver, but I have met many members who aren't as fortunate, live in states where state of the art Scoliosis treatment isn't available, though doc's not qualified are willing to give it a go, I say to those members run. Care across the country can vary widely, I met a member who had surgery in Denver who came from a major city in Montana, in Montana she couldn't get long scoli films done, she had to travel three hours to get scoli films done. Doc's doing this type of surgery NEED to have a varifiable track record with this surgery. While we don't give out names of surgeons for surgery, we give them out for opinions. Surgeon choice is completely theirs. Most members here will have to travel to get to a qualified surgeon, just the way it is. Many newbies feel like their local( and I mean really local) doc will do. I think that if we didn't give them very sound advice about checking into their doc, asking all the hard questions, we would not be serving them well. Afterall this is your spine, not a tonsil removal, you need the very most qualified doc's, who has done this particular surgery often, has patients that are willing to talk to you, and is affiliated with a hospital that will give you excellent care. You wouldn't want to go into heart surgery with a ceneral surgeon, so Revision needs to be undertaken with the same respect and homework on your part. So when we tell new members that seeing a doc with a great track record, even if they have to travel, is best, it sure is. You want the odd's on your side! So suggesting they see a varifiable doc in their region is a good idea, unfortunately there is but a dozen or so names well known out there, for differing reasons. This is a physically demanding surgery, dealing with spines that have been worked on before, so complication rates are higher. My doc now does two of these a week, imagine how much that much surgical time cuts into a family life and how hard it is on them physically. Kumar says many surgeons just don't want to do revisions, much easier to do first time scoli surgeries. This wasn't an area of spinal surgeries he was looking to get into, just developed into what he does since there was such a need in this region, and no other doc's were interested in doing revisions. He says of all his patients, his revision patients are the most thankful, they find the greatest improvement in their lives. So when we recommend new members see very qualified surgeons for opinions, and the same names keep cropping up, Hu, Bridwell, Lenke, Rand, LaGrone, Boachie, it's because we have SEEN their patients do well, move on to productive lives. Advice for opinions needs to varifiable, or we would be wrong giving it. Sure there will be more doc's that will show themselves to be good doc's at this, but time and varifiable results will find their names among the others. [ ] Re: 6 week follow-up Peggy,I am sure no one is expecting your fusion to collapse. The whole point of this group is to share information. Since the information you have seems somewhat different from what most of us have for restrictions it is noteworthy and thus contrasted and commented upon.We each have our own unique healing timelines and challenges. 6 weeks out is way too soon to draw any conclusions about anything. We all want nothing but the best for each member and wish not one of us ever had to go through this again. It is complete anguish for all of us when one of us faces a re-revision. So as good as you feel, I have to say it again, be careful and take it slow and easy!Take Care, Cam Quote Link to comment Share on other sites More sharing options...
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