Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 HI , I feel for you. What a horrible experience you're having. Maybe we can be of some help, but I think we need more information. What kind of hardware/metal do you have? There are different kinds in use. Is your doctor a scoliosis specialist? Have you sought a second opinion? Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 , I have no idea what to say to at this time. I personally have never heard of anything like this before. I do know that if you had not had surgery, you spine would have continued to crush your internal organs and kill you. I did an Internet search awhile back on " Flatback Syndrome " and it brought up many websites. There are a few very good specialists in the field - maybe one of them is near you. They may know of alternatives to use that would not cause such an extreme allergic reaction. Others on the list may have more information to offer. I feel for you and I certainly would not want chemotherapy or radiation either - not for an extreme allergic reaction. I will put you into my prayers. By the way, I am 37 and had surgery when I was 12. Peggy Greene JPG Unlimited Antiques & Collectibles jpgreene@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 , Thank you for replying. I am in Boston. I don't have much hope in a second opinion because the surgeon who did my surgery is the one who " invented " this particular surgery, and he is just about the only one in the country who does it this way. I'm not sure any other surgeon would even touch the surgery. I have gotten tons of second opinions from allergy doctors as well as doctors who specialize in surgical rejection and none of them know what to say or do. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2000 Report Share Posted October 15, 2000 Hi ... I think it might be a good idea to get a second opinion from a scoliosis specialist. Your surgeon might be telling you the truth, but it would good to know that for sure. Where are you located? Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 In a message dated 10/16/2000 10:50:48 AM Eastern Daylight Time, emmareedd@... writes: << I'm not sure any other surgeon would even touch the surgery. >> You can't know that until yoou actually get a second/third opinion. <> But you apparently haven't gotten a second opinion from a scoliosis specialist. It seems to me that you need the opinion of a scoli doc who is not your original surgeon or anyone at his hospital, as to whether the hardware can be removed. There are scoli specialists in the Boston area. Check out www.srs.org. Or, if you are willing to come to NYC, try my doc, Dr. Boachie at Hospital for Special Surgery, 212-606-1948. He gets a lot of complicated cases. Good luck. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Bonnie, Thank you for replying. Yes my doctor is a scoliosis specialist. He's supposed to be very good. We looked for referals all over the country and everyone referred us back to him, and told us if anyone was to do the surgery, we would want him to do it. I was in such denial about what the surgery involved that I did everything possible to ignore it and not pay attention to the details. I will try to find out more information, but for now all I know is that the fusion was in my lower back (T something to L something - I don't remember anymore). I know they were not Harrington rods. The rods do not go up my entire back, just the lower portion. There are 2 rods on either side of my lower spine, and there are metal cages around the lower vertebrae with hooks that attach to the two rods. It was an anterior fusion(???). >From: gimasu@... >Reply-Scoliosis Treatmentegroups >Scoliosis Treatmentegroups >Subject: Re: new here-introduction >Date: Sun, 15 Oct 2000 14:50:23 EDT > >HI , > >I feel for you. What a horrible experience you're having. > >Maybe we can be of some help, but I think we need more information. What >kind of hardware/metal do you have? There are different kinds in use. Is >your doctor a scoliosis specialist? Have you sought a second opinion? >Bonnie _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Dear , Your story is just incredibly awful - I think you should definitely see some scoliosis revision specialists - I don't live in America but people on the list have been to Dr. Boachie in NY, to Dr. Kostuik in Baltimore, to Drs. Bradford and Hu in California and to Dr. La Grone in Texas. I'm pretty sure that any of these doctors would be willing to see you at least: your case is unique and at the worst I'm sure they'd be curious about it. And once they see you I think they will also try to help you. Then you can take it from there. But do SEE someone good before letting them do anything else to you. You are in the thoughts of all of us on the list. Please take care of yourself and don't let any doctor bully or frighten you anymore. All the best, from Italy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2000 Report Share Posted October 16, 2000 Hi ... You don't say who your surgeon was, but if you have access, you might want to consider an appointment with Rand. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 Dear , You said: " We looked for referals all over the country and >everyone referred us back to him, and told us if anyone was to do the >surgery, we would want him to do it. " Was that before or after your problems? If it was before, there's no reason why you shouldn't go to another person. If it was after, there still isn't any reason why you shouldn't ask for a second opinion before having your immune system tampered with. As you know, surgeons are not very happy about criticizing their colleagues' work, so they may not say anything negative about what has been done. However, they should be very up front about what there is to do now, or what they would do. Yous also said " I will try to find out more information, but for now all I know is that the fusion was in >my lower back (T something to L something - I don't remember anymore). I >know they were not Harrington rods. " You have every right in the world to see your own records. I don't know what the process is in the USA - in Italy there's a special office you go to and you make an official request for a photocopy of the records they kept during your surgery. I did that and it was interesting to read - even the handwritten day-to-day comments were there. I'm sure there is something like that in the States. Also over here by law doctors have to write a report on exactly what they did during surgery - I'm sure that if anything, this type of rule is stricter and the task probably better carried out in the USA. So find out how to get your records and then see some doctors. And once again, good luck and we are thinking of you. Best, from Italy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2000 Report Share Posted October 17, 2000 HI , What is your surgeon's name? Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2000 Report Share Posted October 18, 2000 , Please continue to seek care from some other doctor. From what you wrote, it would seem that too many things went wrong under this doctors care. As someone wrote yesterday, they are a number of experts that you need to seek opinions from...Hu, Bradford, Boachie, Kostuik, LaGrone. You need someone better trained to handle your medical condition than your surgeon. To suggest chemo to address your current condition seems extreme to me. Who was your doctor? Have you listed him on the http://www.spinerep.com list? Please do! Jolene in Central Calif Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2000 Report Share Posted October 18, 2000 , Thank you for all of your advice. I have written down all of the doctor's names suggested by all of you and will look into it. My biggest concern is that right now, I don't know of any other " material " besides metal that is used for spinal fusion, and just about every kind of surgical metal has some amount of nickel in it. That is the problem right now. Honestly, I have been so frustrated with all of the doctors lately, that I have just stopped going. I'm sick of people telling me they don't know what to do, so I've been discouraged and not moving very much on this whole issue lately. I've been fighting this and looking for answers for over a year, and I'm only getting worse. Yes, I can get a copy of my medical records. I had requested them after the surgery because I was suspicious of so much going wrong. They only sent me a partial listing of them. From what I did receive, I got more info than I wanted and have been slow to request the rest. I don't know...guess I'm pathetically apathetic these days with all of this...or sick of feeling defeated. I've got a lot of other " stuff " to worry about now too, so it's been kind of easy to push " me " aside for awhile. Thanks, >From: Birch <nabirch@...> >Reply-Scoliosis Treatmentegroups >Scoliosis Treatmentegroups >Subject: Re: new here-introduction >Date: Tue, 17 Oct 2000 08:58:54 +0200 > >Dear , > >You said: > " We looked for referals all over the country and > >everyone referred us back to him, and told us if anyone was to do the > >surgery, we would want him to do it. " > >Was that before or after your problems? If it was before, there's no reason >why you shouldn't go to another person. If it was after, there still isn't >any reason why you shouldn't ask for a second opinion before having your >immune system tampered with. As you know, surgeons are not very happy about >criticizing their colleagues' work, so they may not say anything negative >about what has been done. However, they should be very up front about what >there is to do now, or what they would do. > > Yous also said > " I will try to find out more information, but for now all I know is that >the fusion was in > >my lower back (T something to L something - I don't remember anymore). I > >know they were not Harrington rods. " > >You have every right in the world to see your own records. I don't know >what the process is in the USA - in Italy there's a special office you go >to and you make an official request for a photocopy of the records they >kept during your surgery. I did that and it was interesting to read - even >the handwritten day-to-day comments were there. I'm sure there is something >like that in the States. Also over here by law doctors have to write a >report on exactly what they did during surgery - I'm sure that if anything, >this type of rule is stricter and the task probably better carried out in >the USA. So find out how to get your records and then see some doctors. > >And once again, good luck and we are thinking of you. >Best, > from Italy > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 , I live in Boston. Let me know if you know of anyone here, but I'm willing to go to someone in New York also. >From: Racine <lindaracine@...> >Reply-Scoliosis Treatmentegroups >Scoliosis Treatmentegroups >Subject: Re: new here-introduction >Date: Thu, 19 Oct 2000 15:55:05 -0700 > >... > >It's entirely possible that there are other doctors in your area who >might be of help to you. If you tell us where you live, we might be >able to help. > >-- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 ... It's entirely possible that there are other doctors in your area who might be of help to you. If you tell us where you live, we might be able to help. -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 ... You might consider seeing Dr. Rand. Regards, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2000 Report Share Posted October 20, 2000 A somewhat unconventional suggestion would be to consult a good rheumatologist. They are the specialists who deal with deal with the diseases coused by an over-active immune system, such as rheumatoid arthritis and lupus. Part of the way they treat these diseases is by damping down the immune system, so they are used to helping people live with purposely suppressed immune systems. (We are living at the intersection of these two worlds, since my thirteen year-old daughter has had both juvenile rheumatoid arthritis and scoliosis for several years). on 10/15/00 11:36 AM, Emma at emmareedd@... wrote: > I've been on strong > immunosuppressants to try to stop the rejection, but you can't stay > on > those long term. The only other thing they can think of is radiation > and chemotherapy just to cut down my immune system. But how am I > suppose to live a normal life with a purposely suppressed immune > system, and for how long? Janis -- jlbo@... The Ossmann Family Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2000 Report Share Posted October 21, 2000 Janis, This post caught my eye because my son Dillon was on prednisone for nearly a year for vasculitis and the kidney disease that resulted from the vasculitis. It was awful, but it saved his life. My sister who also has an autoimmune disorder can't take prednisone so she takes Imuran. As bad as prednisone is, Imuran is so much worse. I hope you recover quickly and don't have to change to stronger meds. Hang in there! Sissi nitetrax@... Kids' Page http://home.isoa.net/~nitetrax/dillon.htm Re: new here-introduction > A somewhat unconventional suggestion would be to consult a good > rheumatologist. They are the specialists who deal with deal with the > diseases coused by an over-active immune system, such as rheumatoid > arthritis and lupus. Part of the way they treat these diseases is by > damping down the immune system, so they are used to helping people live with > purposely suppressed immune systems. > > (We are living at the intersection of these two worlds, since my thirteen > year-old daughter has had both juvenile rheumatoid arthritis and scoliosis > for several years). > > on 10/15/00 11:36 AM, Emma at emmareedd@... wrote: > > > I've been on strong > > immunosuppressants to try to stop the rejection, but you can't stay > > on > > those long term. The only other thing they can think of is radiation > > and chemotherapy just to cut down my immune system. But how am I > > suppose to live a normal life with a purposely suppressed immune > > system, and for how long? > > Janis > -- > jlbo@... > The Ossmann Family > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Welcome Ravi and family. We're glad you're here. Jodi mom to Kellen 17 and Heidi 20 jodireimer.blogspot.com > > Hi, > > My name is Ravi and my husband and I have a 6 ½ yr old son w/ DS. We > joined this group to " meet " other parents of children w/ DS. We hope to > hear your experiences and share some of our own as well. > > Thanks, > Ravi- > > www.raisingdowns.com > " Raising our son with Down Syndrome " > > Art by Yahya: <http://www.raisingdowns.com/art> > http://www.raisingdowns.com/art > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2008 Report Share Posted February 28, 2008 Ravi, Welcome to the group Kym...mom to 5 including (10ds) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Life may not be the party we hoped for, but while we are here we might as well dance New Here-Introduction Hi, My name is Ravi and my husband and I have a 6 ½ yr old son w/ DS. We joined this group to " meet " other parents of children w/ DS. We hope to hear your experiences and share some of our own as well. Thanks, Ravi- www.raisingdowns.com " Raising our son with Down Syndrome " Art by Yahya: <http://www.raisingdowns.com/art> http://www.raisingdowns.com/art Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Yes, we have 4 children: 3 boys- 9yrs, 6 1/2 yrs-DS, 5 yrs and 1 girl- 3 1/2 yrs. We live in the suburbs of Chicago. Nice to know you incorporate the entire family in this list. Hope to have some great discussions. Ravi- www.raisingdowns.com " Raising our son with Down Syndrome " Art by Yahya: http://www.raisingdowns.com/art Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 29, 2008 Report Share Posted February 29, 2008 Wow! you have your hands full! Kym...mom to 5 including (10ds) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Life may not be the party we hoped for, but while we are here we might as well dance RE: New Here-Introduction > Yes, we have 4 children: 3 boys- 9yrs, 6 1/2 yrs-DS, 5 yrs and 1 girl- 3 > 1/2 yrs. > > We live in the suburbs of Chicago. Nice to know you incorporate the > entire family in this list. Hope to have some great discussions. > > Ravi- > > www.raisingdowns.com > " Raising our son with Down Syndrome " > > Art by Yahya: http://www.raisingdowns.com/art > > > > > > > Click reply to all for messages to go to the list. Just hit reply for > messages to go to the sender of the message. > Quote Link to comment Share on other sites More sharing options...
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