Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Hi Jordan, Welcome to the group. Are you still in the Boston area? I am wondering who you plan to see for a follow up? Luckily there are several choices of fine surgeons who deal with adults. I live down on Nantucket and had my revision with Dr Rand who is at New England Baptist (was at Childrens in his early career) and I think his typical reply with regard to having revision is that it is " owner driven " ...in other words unless there is a specific medical reason to hurry (and they are usually fairly easy to rule out) you can wait until you are ready. For each of us that means a different thing. Some people use pain as their only yardstick. Others use quality of life or other family issues (wishing to bear children or having young children in the home, or even care giving other family members)as part of their measure. Other considerations certainly would include finances or access to health insurance. So...really it is not possible to lay your circumstance against anyone elses and be able to measure a true end point. The first step in the journey is always finding and obtaining several good opinions about your spines state of affairs. Assuming there is no emergency you may very well choose to work in some of the helpful modalities and see if you might make modifications or other adjustments that work for you. If nothing else, I suspect you might benefit from modifying your work environment and include lots of adequate movement and stretching. If you have significant nerve pain you may not be able to do much to help short of surgery...but it will still help you long term to strengthen yourself and take the necessary time to approach a surgery in a good state of readiness. Just take things one step at a time. You are on the right track finding out about the array of possibilities and slowly you will work your way to what it right for you. Please be sure to go to the files and links section of the group and find additional information that might help. And of course everyone here stands ready to share their insights. Welcome. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2011 Report Share Posted May 4, 2011 Hi Jordan... When my leg pain got so bad that it affected everything I did, I knew it was time for surgery. While there's no rush, if you know you're going to need surgery, I think sooner is better than later. Radicular pain can become permanent if left for too long. What physician are you planning to see? Regards, > > Hi everyone, thank you for this wonderful forum. I am 35 years old and had two fusions in '89 and '90 for scoliosis, performed by Dr. Emans at Boston Children's Hospital, using a version of the Harrington rods that Dr. Emans came up with (I can't recall the exact name of the modified rods). Not sure of the exact vertebrae but I'm fused from the base of my neck to my waist. > > In the intervening years I always had some pain, usually if I was sitting for many hours as on a bus or plane... however, in the past 2-3 years the pain has increased to where I'm stooped over and hurting after a couple hours at my desk (bad thing too as I'm a computer programmer!) and it takes an hour or so of walking around to straighten up. I've also had lots of knee issues that have gotten worse over the years and I've long suspected that was somehow related. > > I finally called for a follow up appointment (after a couple years of putting it off out of fear); waiting for them to call back with a date. In the meantime, I'm trying to educate myself which brought me here. > > I'm wondering: if you had revision surgery, how did you decide it was 'bad enough' that you needed it? Is it better to put off revision surgery as long as possible or does putting it off cause further damage? From what I read, a lot of the determination for 'needing' surgery is based on pain, and I have a huge pain tolerance and I'm not sure I trust my own perception as an indicator (I walked around with two torn ACLs for about a year before I saw a doctor, as an example!) > > I realize I may be putting the cart ahead of the horse here but I'm trying to kill my fear with information prior to my appointment Thanks and I look forward to reading more of the great info presented here. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Hi Jordan, I used Dr Glazer at Beth Isreal Deaconess in Boston. He is a highly skilled surgeon in revision flatback. Good luck C > > Hi Jordan, > > Welcome to the group. > > Are you still in the Boston area? I am wondering who you plan to see for a follow up? Luckily there are several choices of fine surgeons who deal with adults. > > I live down on Nantucket and had my revision with Dr Rand who is at New England Baptist (was at Childrens in his early career) and I think his typical reply with regard to having revision is that it is " owner driven " ...in other words unless there is a specific medical reason to hurry (and they are usually fairly easy to rule out) you can wait until you are ready. For each of us that means a different thing. Some people use pain as their only yardstick. Others use quality of life or other family issues (wishing to bear children or having young children in the home, or even care giving other family members)as part of their measure. Other considerations certainly would include finances or access to health insurance. So...really it is not possible to lay your circumstance against anyone elses and be able to measure a true end point. > > The first step in the journey is always finding and obtaining several good opinions about your spines state of affairs. Assuming there is no emergency you may very well choose to work in some of the helpful modalities and see if you might make modifications or other adjustments that work for you. If nothing else, I suspect you might benefit from modifying your work environment and include lots of adequate movement and stretching. If you have significant nerve pain you may not be able to do much to help short of surgery...but it will still help you long term to strengthen yourself and take the necessary time to approach a surgery in a good state of readiness. > > Just take things one step at a time. You are on the right track finding out about the array of possibilities and slowly you will work your way to what it right for you. Please be sure to go to the files and links section of the group and find additional information that might help. And of course everyone here stands ready to share their insights. Welcome. > > Take Care, Cam > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2011 Report Share Posted May 5, 2011 Surgery is such a big decision for me too! I've been sometimes a contributor and most times a "lurker" on this list and I can tell you that you will always receive up to the minute info from the members! I have scripts for a CT scan and MRI for entire spine from Dr. Ludwig of Univ of MD Spine Ctr. I went to see him for my thoracic kyphosis. The kyphosis is a direct result of my third spine surgery which removed harringtons that had broken and replaced by "segmental" rods with pins. I had had radiation treatments in my mid back in 1981 so my case is not "usual" However, my pain levels have increased and some of the rods are poking out of my mid back due to the severe curve. I'm not able to sit, stand or walk for more than a few minutes and forget about sleeping in a bed....I sleep in a recliner! My NYC surgeon doesn't want to operate on my again but Dr. Ludwig seems to think that I can stand straight again. The decision to have another surgery ,especially far from home (I'm in NJ), is a hard one. I've decided to go thru with all the testing and make a final decision later when I have more information. I suggest that you too continue to get info....when everything falls in place you'll make the right decision! Not sure if this makes any sense after reading it again so please bear with me while I take this route! Also.....has anyone had a problem with having an MRI?....they say that its 30 minutes for each spine section and I can do a "sitting" MRI I think. June-NJ Quote Link to comment Share on other sites More sharing options...
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