Guest guest Posted May 12, 2003 Report Share Posted May 12, 2003 I had a lateral release in 1995 and it worked. I could even run afterwards (though I'm not a runner, so abuse from running never got tested). However, in 1999 I began to have pain again. I attribute this to my having gotten a very sedentary job & stopped mountain climbing. OTOH, it was probably mtn climbing that gave me the pain in the first place. What I have now is CP & torn meniscii. The pain SEEMS to be coming from the CP, and CP damage does show up on MRI. I'm curious how they know you don't have any cartilage damage. Ann In need of advice Hi all, Ive been having knee pain in both knees for 5 months. I have been diagnosed with patellofemoral pain syndrome, meaning I dont have any cartilage damage yet. I have been stationary biking and doing leg lifts to no avail. is strengthening my quads really going to pull my knee cap into alighnment enough? Are weak quads always why the knee cap moves laterally? has anyone had a lateral release? Do they work? What's the recovery time like? Can somebody please answer my questions, Farah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 ... You should definately talk to your cousin. Ask her if she felt uncomfortable and suggest to her how she should deal with any children who may have been laughing about it. You could take it to the extreme and invite her, with a bunch of friends out somewhere, so they'll be having too much fun to notice your size, and then they'll be able to tell others what fun it was with you. I don't know...maybe that's too much, but just a suggestion. But you should talk to her no matter what. Did you feel uncomfortable being surrounded by all the children? Sometimes, the way the LP themself carries over their personality counts for everything. If you felt insecure and uncomfortable, the children would've picked up on that, and played on it. Whereas, sometimes just a smile to all near-by friends would let them see you're not worried about being where you are. Good luck, and let us know what happened Bye bye eeee Faye http://www.faye-missuk.com > > Hello all, > I need some advice I hope you all can help me with. Today my > grandma and I went to the movies. We found the best time is to go > during the weekday in the early afternoon since hardly any one is > there. Well today we went and guess what, a huge school group, > lovely. We had to wait for a stream of 8th graders, all 200 of them > to pass by before we could get to our theater. Well of course there > were some giggles and all of that good stuff but then I saw my > younger cousin. It was her school at the theater. I saw her and > called her over to say hi, she was shocked to see us but I think > honestly the whole thing was uncomfortable. No hugs nothing, she > came over but just gave a casual hi. > I guess my fear is that she's probably going to have to hear about > the " midget " at the movie theater. I know that is going to hurt her > and it makes me mad. I was an 8th grader from that school as well > and I know how ignorant kids are. It doesn't bother me because kids > are ignorant but it bothers me because she will have to hear about > it and it will bother her, she is sensitive about that. She is like > my younger sister and I don't want to see her get hurt over > something stupid. I don't know if I should say something to her or > not. What do you all think? > - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2004 Report Share Posted December 20, 2004 If you know for sure that this is going to bother her than you should definitely say something but if you aren't sure if it will bother her and don't want to bring it up you might casually say " It was neat seeing you at the theatre " and maybe ask her why the school was there and how it related to school. She might then tell you something of how it affected her. I think taking her and her friends out to do something is a great idea. Then they would have a chance to get to know you as a person. The kids are ignorant so take this chance to educate them. I love doing things with kids You probably will have a great time with them. Danette Baker Spokane, WA scraps-of-joy@... Scrapbook pages completed in 2004: 10 April 2004 pages: 2 March 2004 pages: 6 http://www.geocities.com/hotsprings/villa/9405 My disability is not a handicap @ @\ @ @ @ ---\------ @ @ / / I'll be standing in the gap for you Just remember someone, somewhere Is praying for you Calling out your name Praying for your strength I'll be standing in the gap for you ~ Babbie Mason ~ -- In need of advice Hello all, I need some advice I hope you all can help me with. Today my grandma and I went to the movies. We found the best time is to go during the weekday in the early afternoon since hardly any one is there. Well today we went and guess what, a huge school group, lovely. We had to wait for a stream of 8th graders, all 200 of them to pass by before we could get to our theater. Well of course there were some giggles and all of that good stuff but then I saw my younger cousin. It was her school at the theater. I saw her and called her over to say hi, she was shocked to see us but I think honestly the whole thing was uncomfortable. No hugs nothing, she came over but just gave a casual hi. I guess my fear is that she's probably going to have to hear about the " midget " at the movie theater. I know that is going to hurt her and it makes me mad. I was an 8th grader from that school as well and I know how ignorant kids are. It doesn't bother me because kids are ignorant but it bothers me because she will have to hear about it and it will bother her, she is sensitive about that. She is like my younger sister and I don't want to see her get hurt over something stupid. I don't know if I should say something to her or not. What do you all think? - === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2004 Report Share Posted December 21, 2004 It could just be an age thing too. When Tasha was 14 to about 17, she didn't want to be caught dead with any older adult she was related to. I think she told all her friends that her parents were Clooney and . -Bill -------------- Original message -------------- Hello all, I need some advice I hope you all can help me with. Today my grandma and I went to the movies. We found the best time is to go during the weekday in the early afternoon since hardly any one is there. Well today we went and guess what, a huge school group, lovely. We had to wait for a stream of 8th graders, all 200 of them to pass by before we could get to our theater. Well of course there were some giggles and all of that good stuff but then I saw my younger cousin. It was her school at the theater. I saw her and called her over to say hi, she was shocked to see us but I think honestly the whole thing was uncomfortable. No hugs nothing, she came over but just gave a casual hi. I guess my fear is that she's probably going to have to hear about the " midget " at the movie theater. I know that is going to hurt her and it makes me mad. I was an 8th grader from that school as well and I know how ignorant kids are. It doesn't bother me because kids are ignorant but it bothers me because she will have to hear about it and it will bother her, she is sensitive about that. She is like my younger sister and I don't want to see her get hurt over something stupid. I don't know if I should say something to her or not. What do you all think? - === Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Tom, I have had carticel behind the knee cap. I am getting ready to have the other one done. I will tell you that carticel behind the knee cap there is not a lot of long term in formation about that. I think the studies are only at about 5 years. The damage behind the knee cap is the hardest to heal. I am a year out this month of the first carticel procedure. The doctor said if I was 50% better than I was then go ahead and do the other. The one thing I was told that carticel behind the knee cap does not necessarily mean you will be pain free. I still have a lot of pain most days. I will also tell you to make sure you physical therapist has experience in dealing with carticel patients. Just like most ortho doctors can perform carticel your physical therapist needs that experience because the pt is very strict doing that time. It takes two years for the carticel to take. It is really hard to say what you will be able to do or not do mainly because it is behind the knee cap. I still have trouble with steps and some days getting up out of a chair. I have been through a lot with my knee caps I have not been to work in 5 years. I hope to able to return after these last two procedures I will be having this month and then about 6 to 8 weeks later. I would also say stay in therapy if you can up until you have the operation. It helps being in shape. I also did not have the procedure done through workman comp but I will tell you because the cost is about 70,000 you might have to fight for it. If you have any other questions you can email me directly. Hope this helps Tara In a message dated 8/7/2008 7:25:49 P.M. Eastern Daylight Time, tom70177@... writes: I am 28 years old. I have a very active career as a firefighter. My injury occurred at work from crawling, lifting, falls, etc, etc. Anything one person can subject a knee to, I did. At first the doctors believed that I had a torn meniscus, but the scope revealed much more damage. The back of my kneecap looked like crab meat, just like I have seen in some of the pictures here. The surgeon repaired my meniscus, which had minimal damage, but could do little for my kneecap. He is now recommending Carticel. I'm inclined to have some sort of surgery done - even after the initial shaving during arthroscopic surgery my kneecap still looks very, very rough. I do not want arthritis and a knee replacement in the future. And I cannot work with the pain and muscle atrophy (PT is helping the atrophy, but not the pain). I have a few questions for everyone here. Are there other options that I should explore first? Has anyone had the Carticel procedure through workers comp? If so, any problems getting it approved? What are my chances of returning to normal firefighter activities? (i.e. eating, sleeping, watching television) Just kidding. But will I be able to work again? Or, should I plan on a " light duty " desk job? How much PT should I do before Carticel? Do my muscles need to be strong before Carticel to make recovery easier? Should I have any more questions? I'll keep you posted on my progress. Thank you, Tom **************Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Tom, First of all sorry for your problem at such a young age. I have had the Carticel procedure (although not on the knee cap) and I am doing very well. I know another guy here in Houston that had Carticel and is now actively pralying sports such as softball one year later. Like you he is realtively young and very fit. If I was to have the procedure again, I would want to go in as strong as possible. I know you are hurt now and that is the problem most of us have. It is very hard to build up strength when you can;t get past the pain. Do what the PT says, but do not do exercises that cause more pain. My carticel was not a workmans comp. It was straight insurance and I had no problems getting approval. I did have two procedures trying to solve the problem before the Carticel. Now a total of 5 procedure later, I am doing very well. I am 51 so you should bounce back much faster than an old dude like myself. Ask any questions and we will try to help you out. Don On Thu, Aug 7, 2008 at 6:25 PM, Tom70177 <tom70177@...> wrote: > I am 28 years old. I have a very active career as a firefighter. My > injury occurred at work from crawling, lifting, falls, etc, etc. > Anything one person can subject a knee to, I did. At first the > doctors believed that I had a torn meniscus, but the scope revealed > much more damage. The back of my kneecap looked like crab meat, just > like I have seen in some of the pictures here. The surgeon repaired > my meniscus, which had minimal damage, but could do little for my > kneecap. He is now recommending Carticel. I'm inclined to have some > sort of surgery done - even after the initial shaving during > arthroscopic surgery my kneecap still looks very, very rough. I do > not want arthritis and a knee replacement in the future. And I cannot > work with the pain and muscle atrophy (PT is helping the atrophy, but > not the pain). I have a few questions for everyone here. > > Are there other options that I should explore first? > > Has anyone had the Carticel procedure through workers comp? If so, > any problems getting it approved? > > What are my chances of returning to normal firefighter activities? > (i.e. eating, sleeping, watching television) Just kidding. But will I > be able to work again? Or, should I plan on a " light duty " desk job? > > How much PT should I do before Carticel? Do my muscles need to be > strong before Carticel to make recovery easier? > > Should I have any more questions? I'll keep you posted on my progress. > > Thank you, > > Tom > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hey, Tom. I'm 38, so I'm not as young as you but not too old either. ;-) I used to be a paramedic (some 15 years ago) so I have an idea what you're looking at for an activity level. (I'm a computer geek now, so my activity level before the knee pain got too bad was outside of work.) I had patellar ACI (Carticel) with a TTT (Fulkersons) in February of this year, so I'm not even back to a regular activity level, much less a demanding one (I'm not allowed steps or leg presses yet) and won't be for some time. From what I've experienced so far, looking at my rehab plan, and talking to other ACI'rs on Knee Geeks (another online bulletin board) who are looking for high activity life styles, you should plan on the recovery time for the kind of activity you're looking at to be 2 years after the transplant. And of course you've got all the stuff in between here and there... harvesting the cartilage, getting all the approvals, etc. Mine wasn't work comp, so I had a long insurance fight. I don't know what you'll be up against, but they try to consider the patellar ACI as experimental and investigational, so you may or may not have a similar fight to mine, depending on who the insurance carrier is. You'll definitely want to go in as strong as you can, but be careful not to grate the kneecap further. My surgeon says that weighted leg extensions are the worst thing possible for the kneecap, and when my knee problems started ages ago, they had me do them constantly for the knee. Go figure. In the interim, my OS had me doing all the straight leg raises, a lot of stationary bicycling, and if I'd been able to get access to a pool, water aerobics and deep water jogging. I'm happy to answer any questions I can. Good luck! Meg. Tom70177 wrote: > > I am 28 years old. I have a very active career as a firefighter. My > injury occurred at work from crawling, lifting, falls, etc, etc. > Anything one person can subject a knee to, I did. At first the > doctors believed that I had a torn meniscus, but the scope revealed > much more damage. The back of my kneecap looked like crab meat, just > like I have seen in some of the pictures here. The surgeon repaired > my meniscus, which had minimal damage, but could do little for my > kneecap. He is now recommending Carticel. I'm inclined to have some > sort of surgery done - even after the initial shaving during > arthroscopic surgery my kneecap still looks very, very rough. I do > not want arthritis and a knee replacement in the future. And I cannot > work with the pain and muscle atrophy (PT is helping the atrophy, but > not the pain). I have a few questions for everyone here. > > Are there other options that I should explore first? > > Has anyone had the Carticel procedure through workers comp? If so, > any problems getting it approved? > > What are my chances of returning to normal firefighter activities? > (i.e. eating, sleeping, watching television) Just kidding. But will I > be able to work again? Or, should I plan on a " light duty " desk job? > > How much PT should I do before Carticel? Do my muscles need to be > strong before Carticel to make recovery easier? > > Should I have any more questions? I'll keep you posted on my progress. > > Thank you, > > Tom > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Jen,I'm so sorry, I would be very upset. I would not give up hope, though. I would talk to on the phone if you can, she has a "big picture" and the most info. You can also get the best billing codes for casting in the U.S. for insurance here from Jenn L. And in our opinion, I'm weathered right now, but we would keep going. Your in cast number is excellent. A lot of older kids- over 3- have had great results when going the distance with casting, but at the very least, you avoid the surgery for as long as possible.Assuming the MRI showed no tethered cord, etc. I am just a parent, so this is only based on what I've learned so far. I just think growing rods can only be lengthened so many times- around 6 times every 6 months over about 3 years. If I'm wrong someone please correct me- hopefully there will me more medical advances very soon. For me, I would rather start older if possible, to allow for as much growth as possible. Hope this helps. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Jen Parlante <jenparlante@...>infantile scoliosis treatment Sent: Wed, December 29, 2010 4:10:47 PMSubject: In need of advice Here is my issue.....I originally was going to go to Shriner's in Philadelphia for casting. However, when I met with the Dr. that does the casting he informed me that he doesn't use "shoulder straps" when he cast. I had asked all of you your thoughts and most of you suggested that we go to Shriner's in Chicago. We ended up taking your advice and it will be a year of casting in Chicago this February. As most of you know Dr. S left Shriner's to go to Cincinnati children's. So, for 's 4th cast he was casted by a different Dr. To be honest I wasn't as comfortable with him. Here's why....I had asked him what the game plan was for 's ortho care. And he blurted out that its inevitable that he will need spinal surgery. He also told me that was 10 degrees in cast and 44 degrees out. When the lump in my throat cleared, I told him was 0 degrees in cast and 40 degrees the last visit. I had asked him what the likely hood was that the x-ray during his 3rd casting wasn't accurate. He said regardless he needs surgery. So for 's 5th cast I decided to take him to see Dr. S in Cincinnati. I had everything ready to go for his next apt. And today I found out our health insurance policy is changing and doesn't cover casting. What should I do? If we're just holding the curve should we just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd appreciate any suggestions/advice you have for me. As always Thank You!!!! Jen Parlante~mom to 3yrs old(52*down to 44*) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Hi Jen, I don't know much about the various types of casts - I defer to on that. What I do know, however, is that the team at Shriners Philly, led by Dr. B (who I would guess knows as much about IIS and JIS as anyone)has been awesome the past 7 years they have been caring for my son - and during that time I've met so many families who were helped in Philly when nobody else knew what to do with complex, usually early onset, scoliosis cases (patients with multiple issues, etc.). Did you ask the doctor there why he doesn't use shoulder straps? I am curious and most importantly, if they are doing it 'wrong' I would like to see them correct it because the care there is excellent and if they could tweak their casting method (assuming they are doing it wrong) it could help countless children. If you wish to get in touch with the PA who works with the spine team there, please e-mail me (mariaf305@...). She's great - very knowledgeable and definitely open to a parent's views, concerns, etc. (as I have also found the doctors there to be - right up to the Chief of Staff). Hopefully they would be open to hearing the reasons (from perhaps?) why the shoulder straps are needed. As I said, I really don't know much about the various casting methods but I do know they want to do what is best for the patient - and I have found that, unlike some surgeons, they don't have any big egos that stand in the way of this. Best of luck to you and please keep us posted on your son. > > Here is my issue.....I originally was going to go to Shriner's in Philadelphia for casting. However, when I met with the Dr. that does the casting he informed me that he doesn't use " shoulder straps " when he cast. I had asked all of you your thoughts and most of you suggested that we go to Shriner's in Chicago.  We ended up taking your advice and it will be a year of casting in Chicago this February. As most of you know Dr. S left Shriner's to go to Cincinnati children's. So, for 's 4th cast he was casted by a different Dr. To be honest I wasn't as comfortable with him. Here's why....I had asked him what the game plan was for 's ortho care. And he blurted out that its inevitable that he will need spinal surgery. He also told me that was 10 degrees in cast and 44 degrees out. >  When the lump in my throat cleared, I told him was 0 degrees in cast and 40 degrees the last visit. I had asked him what the likely hood was that the x-ray during his 3rd casting wasn't accurate. He said regardless he needs surgery. > So for 's 5th cast I decided to take him to see Dr. S in Cincinnati. I had everything ready to go for his next apt. And today I found out our health insurance policy is changing and doesn't cover casting. What should I do? If we're just holding the curve should we just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd appreciate any suggestions/advice you have for me. As always Thank You!!!! >  > Jen Parlante~mom to 3yrs old(52*down to 44*) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 I say go with your gut. I will tell you, that after a year of casting, our doctor said they usually know (that is usually) if the child is going to correct in the cast. We were told that our daughter is going to eventually need surgery too but he will do whatever he can to keep correcting her until she is old enough to go through the surgery which he said he wouldn't like to do until she is between 7 & 9. Patty, mom of Isabella, 3 years old, in 8th scoli cast (Rochester) & mom to (9) & Evan(6)From: Jen Parlante <jenparlante@...>infantile scoliosis treatment Sent: Wed, December 29, 2010 7:10:47 PMSubject: In need of advice Here is my issue.....I originally was going to go to Shriner's in Philadelphia for casting. However, when I met with the Dr. that does the casting he informed me that he doesn't use "shoulder straps" when he cast. I had asked all of you your thoughts and most of you suggested that we go to Shriner's in Chicago. We ended up taking your advice and it will be a year of casting in Chicago this February. As most of you know Dr. S left Shriner's to go to Cincinnati children's. So, for 's 4th cast he was casted by a different Dr. To be honest I wasn't as comfortable with him. Here's why....I had asked him what the game plan was for 's ortho care. And he blurted out that its inevitable that he will need spinal surgery. He also told me that was 10 degrees in cast and 44 degrees out. When the lump in my throat cleared, I told him was 0 degrees in cast and 40 degrees the last visit. I had asked him what the likely hood was that the x-ray during his 3rd casting wasn't accurate. He said regardless he needs surgery. So for 's 5th cast I decided to take him to see Dr. S in Cincinnati. I had everything ready to go for his next apt. And today I found out our health insurance policy is changing and doesn't cover casting. What should I do? If we're just holding the curve should we just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd appreciate any suggestions/advice you have for me. As always Thank You!!!! Jen Parlante~mom to 3yrs old(52*down to 44*) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Jen, I am still relatively new to this world of casting. We go to Shriner's Chicago and our inital appt was with Dr. S. We found out he was leaving and we unsure and upset. After talking with , about Dr. H, we felt reassured. Our daughter had her first cast on Sept. 14th in which both Dr. S and Dr. H were present and involved. We spoke with Dr. H after the surgery and found him to be gentle and straight forward. We then saw Dr. H about 1 month later for a follow up since it was Kiya's first cast and he was very supportive and encouraging. I felt confident that my daughter was getting the best care possible. We have faced a setback due to a pressure sore and my daughter has been out of cast since Nov. 23rd and we are waiting for a second cast date. This whole process is such a roller coaster. We are definitely staying at Shriner's Chicago and are hoping for good results in the long run. I would echo others and go with your gut but just wanted to share our experience with Dr. H. I wish you all the best and hope you find peace in your decision. Mom, to Kiya, 2yrs old started at 52* out of cast and was down to 15 in cast, waiting on cast #2 at Chicago Shriner's and praying we haven't lost any correction. > > Here is my issue.....I originally was going to go to Shriner's in Philadelphia for casting. However, when I met with the Dr. that does the casting he informed me that he doesn't use " shoulder straps " when he cast. I had asked all of you your thoughts and most of you suggested that we go to Shriner's in Chicago.  We ended up taking your advice and it will be a year of casting in Chicago this February. As most of you know Dr. S left Shriner's to go to Cincinnati children's. So, for 's 4th cast he was casted by a different Dr. To be honest I wasn't as comfortable with him. Here's why....I had asked him what the game plan was for 's ortho care. And he blurted out that its inevitable that he will need spinal surgery. He also told me that was 10 degrees in cast and 44 degrees out. >  When the lump in my throat cleared, I told him was 0 degrees in cast and 40 degrees the last visit. I had asked him what the likely hood was that the x-ray during his 3rd casting wasn't accurate. He said regardless he needs surgery. > So for 's 5th cast I decided to take him to see Dr. S in Cincinnati. I had everything ready to go for his next apt. And today I found out our health insurance policy is changing and doesn't cover casting. What should I do? If we're just holding the curve should we just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd appreciate any suggestions/advice you have for me. As always Thank You!!!! >  > Jen Parlante~mom to 3yrs old(52*down to 44*) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Hi Jen, My daugther Giana, see's Dr. H. We met him at RUSH and he sent us over to Shriners to start casting. My daughter has congential scoliosis and kyphosis. She will need surgery eventually. We are now almost done with cast 3 and so far we are gaining correction. Dr. H will cast her as long as he can to hold off surgery. He was very adament about not wanting to do suregery until we absolutley had to. I know that Dr. H comes off a little harsh sometimes. When I first met him he pretty much laid it all on the line for us. However he wants the very best for Giana. He insists we are monitered by a pulmonologist due to the kyphosis even tho at this point there are no pulmonary issues. When we first started our journey, the dr we had before, who monitered Giana for a year, was ready to do surgery. He had never even heard of casting. Dr. H was a blessing to us. He is a very blunt and truthful dr and beleive me I walked out of there feeling the same was as you. But I am now very glad to know the honest truth. And also very hopeful because she is gaining correction. I am very confident that he will not do survery until its absolutly necessary. I hope that this helps you! You have to follow your gut. But I thought our experience might help you. In need of advice Here is my issue.....I originally was going to go to Shriner's in Philadelphia for casting. However, when I met with the Dr. that does the casting he informed me that he doesn't use "shoulder straps" when he cast. I had asked all of you your thoughts and most of you suggested that we go to Shriner's in Chicago. We ended up taking your advice and it will be a year of casting in Chicago this February. As most of you know Dr. S left Shriner's to go to Cincinnati children's. So, for 's 4th cast he was casted by a different Dr. To be honest I wasn't as comfortable with him. Here's why....I had asked him what the game plan was for 's ortho care. And he blurted out that its inevitable that he will need spinal surgery. He also told me that was 10 degrees in cast and 44 degrees out. When the lump in my throat cleared, I told him was 0 degrees in cast and 40 degrees the last visit. I had asked him what the likely hood was that the x-ray during his 3rd casting wasn't accurate. He said regardless he needs surgery. So for 's 5th cast I decided to take him to see Dr. S in Cincinnati. I had everything ready to go for his next apt. And today I found out our health insurance policy is changing and doesn't cover casting. What should I do? If we're just holding the curve should we just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd appreciate any suggestions/advice you have for me. As always Thank You!!!! Jen Parlante~mom to 3yrs old(52*down to 44*) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2010 Report Share Posted December 30, 2010 Hi , Would you mind telling me a bit about your daughters congenital scoliosis? My daughter (16 months) was just diagnosed yesterday and I am trying to find out more about it. I have only seen the pediatrician about it and he said that surgery was the only option for her hemi vertebrae, and that casting/bracing was for idiopathic curves, or after surgery. Thanks, Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2010 Report Share Posted December 31, 2010 I hope it's not rude, but just wanted to say that based on everything we've learned- of course we will do surgery if or when it is necessary- but in my humble opinion, your doctor is so right. Surgery is- thank God we have it- and I am pro- medicine and surgery, believe me! But in the world of our children's spinal growth...right now, casting allows the most normal chest cavity growth, for as long as possible. Hope this helps. Heidi, Bexon's Mommy, (3 years old, in 8th cast from Salt Lake City Shriners, currently down from 62 degrees to 20 in cast. You can read Bexon's Story on www.GirltoMom.com)From: Bancsy <bancsy@...>infantile scoliosis treatment Sent: Thu, December 30, 2010 2:56:57 PMSubject: Re: In need of advice Hi Jen, My daugther Giana, see's Dr. H. We met him at RUSH and he sent us over to Shriners to start casting. My daughter has congential scoliosis and kyphosis. She will need surgery eventually. We are now almost done with cast 3 and so far we are gaining correction. Dr. H will cast her as long as he can to hold off surgery. He was very adament about not wanting to do suregery until we absolutley had to. I know that Dr. H comes off a little harsh sometimes. When I first met him he pretty much laid it all on the line for us. However he wants the very best for Giana. He insists we are monitered by a pulmonologist due to the kyphosis even tho at this point there are no pulmonary issues. When we first started our journey, the dr we had before, who monitered Giana for a year, was ready to do surgery. He had never even heard of casting. Dr. H was a blessing to us. He is a very blunt and truthful dr and beleive me I walked out of there feeling the same was as you. But I am now very glad to know the honest truth. And also very hopeful because she is gaining correction. I am very confident that he will not do survery until its absolutly necessary. I hope that this helps you! You have to follow your gut. But I thought our experience might help you. In need of advice Here is my issue.....I originally was going to go to Shriner's in Philadelphia for casting. However, when I met with the Dr. that does the casting he informed me that he doesn't use "shoulder straps" when he cast. I had asked all of you your thoughts and most of you suggested that we go to Shriner's in Chicago. We ended up taking your advice and it will be a year of casting in Chicago this February. As most of you know Dr. S left Shriner's to go to Cincinnati children's. So, for 's 4th cast he was casted by a different Dr. To be honest I wasn't as comfortable with him. Here's why....I had asked him what the game plan was for 's ortho care. And he blurted out that its inevitable that he will need spinal surgery. He also told me that was 10 degrees in cast and 44 degrees out. When the lump in my throat cleared, I told him was 0 degrees in cast and 40 degrees the last visit. I had asked him what the likely hood was that the x-ray during his 3rd casting wasn't accurate. He said regardless he needs surgery. So for 's 5th cast I decided to take him to see Dr. S in Cincinnati. I had everything ready to go for his next apt. And today I found out our health insurance policy is changing and doesn't cover casting. What should I do? If we're just holding the curve should we just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd appreciate any suggestions/advice you have for me. As always Thank You!!!! Jen Parlante~mom to 3yrs old(52*down to 44*) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Hi Jenn, I would contact both places and request to communicate at length with both treating docs, so you have the info needed to make the best decision possible. I think dialogue w/ these docs is necessary at this point, to ensure that everyone is on the same page. If has not yet been seen in Philly, I would recommend getting a packet together w/ his most recent x-rays, photos, a brief medical bio, and a list of real pointed questions...If you would like a little help on questions, let me know. Sincerely, HRH > Here is my issue.....I originally was going to go to Shriner's in > Philadelphia for casting. However, when I met with the Dr. that does the > casting he informed me that he doesn't use " shoulder straps " when he cast. > I had asked all of you your thoughts and most of you suggested that we go > to Shriner's in Chicago.  We ended up taking your advice and it will be a > year of casting in Chicago this February. As most of you know Dr. S left > Shriner's to go to Cincinnati children's. So, for 's 4th cast he > was casted by a different Dr. To be honest I wasn't as comfortable with > him. Here's why....I had asked him what the game plan was for 's > ortho care. And he blurted out that its inevitable that he will need > spinal surgery. He also told me that was 10 degrees in cast and 44 > degrees out. >  When the lump in my throat cleared, I told him was 0 degrees in > cast and 40 degrees the last visit. I had asked him what the likely hood > was that the x-ray during his 3rd casting wasn't accurate. He said > regardless he needs surgery. > So for 's 5th cast I decided to take him to see Dr. S in > Cincinnati. I had everything ready to go for his next apt. And today I > found out our health insurance policy is changing and doesn't cover > casting. What should I do? If we're just holding the curve should we just > go to Philadelphia Shriner's? Do I give Chicago another shot? I'd > appreciate any suggestions/advice you have for me. As always Thank You!!!! >  > Jen Parlante~mom to 3yrs old(52*down to 44*) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2011 Report Share Posted January 3, 2011 Great post, ! An FYI- the pioneer of ET and most docs currently applying ET feel that a curve w/ an apex under T-8/9 may be treated effectively w/ an under arm cast. Curves at or above T-8/9 would be best addressed by an over the shoulder type of EDF cast. HTH's HRH > Hi Jen, > > I don't know much about the various types of casts - I defer to on > that. > > What I do know, however, is that the team at Shriners Philly, led by Dr. B > (who I would guess knows as much about IIS and JIS as anyone)has been > awesome the past 7 years they have been caring for my son - and during > that time I've met so many families who were helped in Philly when nobody > else knew what to do with complex, usually early onset, scoliosis cases > (patients with multiple issues, etc.). > > Did you ask the doctor there why he doesn't use shoulder straps? I am > curious and most importantly, if they are doing it 'wrong' I would like to > see them correct it because the care there is excellent and if they could > tweak their casting method (assuming they are doing it wrong) it could > help countless children. > > If you wish to get in touch with the PA who works with the spine team > there, please e-mail me (mariaf305@...). She's great - very > knowledgeable and definitely open to a parent's views, concerns, etc. (as > I have also found the doctors there to be - right up to the Chief of > Staff). Hopefully they would be open to hearing the reasons (from > perhaps?) why the shoulder straps are needed. > > As I said, I really don't know much about the various casting methods but > I do know they want to do what is best for the patient - and I have found > that, unlike some surgeons, they don't have any big egos that stand in the > way of this. > > Best of luck to you and please keep us posted on your son. > > > >> >> Here is my issue.....I originally was going to go to Shriner's in >> Philadelphia for casting. However, when I met with the Dr. that does the >> casting he informed me that he doesn't use " shoulder straps " when he >> cast. I had asked all of you your thoughts and most of you suggested >> that we go to Shriner's in Chicago.  We ended up taking your advice and >> it will be a year of casting in Chicago this February. As most of you >> know Dr. S left Shriner's to go to Cincinnati children's. So, for >> 's 4th cast he was casted by a different Dr. To be honest I >> wasn't as comfortable with him. Here's why....I had asked him what the >> game plan was for 's ortho care. And he blurted out that its >> inevitable that he will need spinal surgery. He also told me that >> was 10 degrees in cast and 44 degrees out. >>  When the lump in my throat cleared, I told him was 0 degrees in >> cast and 40 degrees the last visit. I had asked him what the likely hood >> was that the x-ray during his 3rd casting wasn't accurate. He said >> regardless he needs surgery. >> So for 's 5th cast I decided to take him to see Dr. S in >> Cincinnati. I had everything ready to go for his next apt. And today I >> found out our health insurance policy is changing and doesn't cover >> casting. What should I do? If we're just holding the curve should we >> just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd >> appreciate any suggestions/advice you have for me. As always Thank >> You!!!! >>  >> Jen Parlante~mom to 3yrs old(52*down to 44*) >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Got it, thanks so much, ! As I am always happy to try to expedite things between parents and the team in Philly (who have probably, affectionately, named me 'the pest' by now!), if you have any additional literature that describes in more detail underarm vs. over shoulder casting, please e-mail it to me. I'll be in Philly on 1/17 and if time allows, I'd like to discuss this with them since it is becoming more of an issue with certain doctors leaving the Shriners system or moving - and since casting (I'm guessing) isn't always covered by insurnace, parents need as many options of where to go as possible!! > >> > >> Here is my issue.....I originally was going to go to Shriner's in > >> Philadelphia for casting. However, when I met with the Dr. that does the > >> casting he informed me that he doesn't use " shoulder straps " when he > >> cast. I had asked all of you your thoughts and most of you suggested > >> that we go to Shriner's in Chicago.  We ended up taking your advice and > >> it will be a year of casting in Chicago this February. As most of you > >> know Dr. S left Shriner's to go to Cincinnati children's. So, for > >> 's 4th cast he was casted by a different Dr. To be honest I > >> wasn't as comfortable with him. Here's why....I had asked him what the > >> game plan was for 's ortho care. And he blurted out that its > >> inevitable that he will need spinal surgery. He also told me that > >> was 10 degrees in cast and 44 degrees out. > >>  When the lump in my throat cleared, I told him was 0 degrees in > >> cast and 40 degrees the last visit. I had asked him what the likely hood > >> was that the x-ray during his 3rd casting wasn't accurate. He said > >> regardless he needs surgery. > >> So for 's 5th cast I decided to take him to see Dr. S in > >> Cincinnati. I had everything ready to go for his next apt. And today I > >> found out our health insurance policy is changing and doesn't cover > >> casting. What should I do? If we're just holding the curve should we > >> just go to Philadelphia Shriner's? Do I give Chicago another shot? I'd > >> appreciate any suggestions/advice you have for me. As always Thank > >> You!!!! > >>  > >> Jen Parlante~mom to 3yrs old(52*down to 44*) > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2011 Report Share Posted January 5, 2011 Funny, , I gave pretty much the very same advice about dialogue, etc. Funny or scary?? LOL!! > > Hi Jenn, > I would contact both places and request to communicate at length with both > treating docs, so you have the info needed to make the best decision > possible. I think dialogue w/ these docs is necessary at this point, to > ensure that everyone is on the same page. If has not yet been > seen in Philly, I would recommend getting a packet together w/ his most > recent x-rays, photos, a brief medical bio, and a list of real pointed > questions...If you would like a little help on questions, let me know. > Sincerely, > HRH > > > Here is my issue.....I originally was going to go to Shriner's in > > Philadelphia for casting. However, when I met with the Dr. that does the > > casting he informed me that he doesn't use " shoulder straps " when he cast. > > I had asked all of you your thoughts and most of you suggested that we go > > to Shriner's in Chicago.  We ended up taking your advice and it will be a > > year of casting in Chicago this February. As most of you know Dr. S left > > Shriner's to go to Cincinnati children's. So, for 's 4th cast he > > was casted by a different Dr. To be honest I wasn't as comfortable with > > him. Here's why....I had asked him what the game plan was for 's > > ortho care. And he blurted out that its inevitable that he will need > > spinal surgery. He also told me that was 10 degrees in cast and 44 > > degrees out. > >  When the lump in my throat cleared, I told him was 0 degrees in > > cast and 40 degrees the last visit. I had asked him what the likely hood > > was that the x-ray during his 3rd casting wasn't accurate. He said > > regardless he needs surgery. > > So for 's 5th cast I decided to take him to see Dr. S in > > Cincinnati. I had everything ready to go for his next apt. And today I > > found out our health insurance policy is changing and doesn't cover > > casting. What should I do? If we're just holding the curve should we just > > go to Philadelphia Shriner's? Do I give Chicago another shot? I'd > > appreciate any suggestions/advice you have for me. As always Thank You!!!! > >  > > Jen Parlante~mom to 3yrs old(52*down to 44*) > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 tHANKS SCOLI SISTA! Unfortunately, no studies have been done on this........yet. I just get my info directly from the pioneer and tend to go with her opinion, always. And, most of the docs that have been trained by her agree. Thanks for being such an advocate for children with scoli, . I connected the VBS site to ISOP, did you notice? I'll try and reach you soon! (hugs) HRH **BTW, I know they appreciate you girl! Please keep it up! > Got it, thanks so much, ! > > As I am always happy to try to expedite things between parents and the > team in Philly (who have probably, affectionately, named me 'the pest' by > now!), if you have any additional literature that describes in more detail > underarm vs. over shoulder casting, please e-mail it to me. > > I'll be in Philly on 1/17 and if time allows, I'd like to discuss this > with them since it is becoming more of an issue with certain doctors > leaving the Shriners system or moving - and since casting (I'm guessing) > isn't always covered by insurnace, parents need as many options of where > to go as possible!! > > > >> >> >> >> Here is my issue.....I originally was going to go to Shriner's in >> >> Philadelphia for casting. However, when I met with the Dr. that does >> the >> >> casting he informed me that he doesn't use " shoulder straps " when he >> >> cast. I had asked all of you your thoughts and most of you suggested >> >> that we go to Shriner's in Chicago.  We ended up taking your advice >> and >> >> it will be a year of casting in Chicago this February. As most of you >> >> know Dr. S left Shriner's to go to Cincinnati children's. So, for >> >> 's 4th cast he was casted by a different Dr. To be honest I >> >> wasn't as comfortable with him. Here's why....I had asked him what >> the >> >> game plan was for 's ortho care. And he blurted out that its >> >> inevitable that he will need spinal surgery. He also told me that >> >> was 10 degrees in cast and 44 degrees out. >> >>  When the lump in my throat cleared, I told him was 0 degrees >> in >> >> cast and 40 degrees the last visit. I had asked him what the likely >> hood >> >> was that the x-ray during his 3rd casting wasn't accurate. He said >> >> regardless he needs surgery. >> >> So for 's 5th cast I decided to take him to see Dr. S in >> >> Cincinnati. I had everything ready to go for his next apt. And today >> I >> >> found out our health insurance policy is changing and doesn't cover >> >> casting. What should I do? If we're just holding the curve should we >> >> just go to Philadelphia Shriner's? Do I give Chicago another shot? >> I'd >> >> appreciate any suggestions/advice you have for me. As always Thank >> >> You!!!! >> >>  >> >> Jen Parlante~mom to 3yrs old(52*down to 44*) >> >> >> > >> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2011 Report Share Posted January 6, 2011 AWESOME! > Funny, , I gave pretty much the very same advice. > > Funny or scary?? LOL!! > > >> >> Hi Jenn, >> I would contact both places and request to communicate at length with >> both >> treating docs, so you have the info needed to make the best decision >> possible. I think dialogue w/ these docs is necessary at this point, to >> ensure that everyone is on the same page. If has not yet been >> seen in Philly, I would recommend getting a packet together w/ his most >> recent x-rays, photos, a brief medical bio, and a list of real pointed >> questions...If you would like a little help on questions, let me know. >> Sincerely, >> HRH >> >> > Here is my issue.....I originally was going to go to Shriner's in >> > Philadelphia for casting. However, when I met with the Dr. that does >> the >> > casting he informed me that he doesn't use " shoulder straps " when he >> cast. >> > I had asked all of you your thoughts and most of you suggested that >> we go >> > to Shriner's in Chicago.  We ended up taking your advice and it will >> be a >> > year of casting in Chicago this February. As most of you know Dr. S >> left >> > Shriner's to go to Cincinnati children's. So, for 's 4th cast >> he >> > was casted by a different Dr. To be honest I wasn't as comfortable >> with >> > him. Here's why....I had asked him what the game plan was for >> 's >> > ortho care. And he blurted out that its inevitable that he will need >> > spinal surgery. He also told me that was 10 degrees in cast >> and 44 >> > degrees out. >> >  When the lump in my throat cleared, I told him was 0 degrees >> in >> > cast and 40 degrees the last visit. I had asked him what the likely >> hood >> > was that the x-ray during his 3rd casting wasn't accurate. He said >> > regardless he needs surgery. >> > So for 's 5th cast I decided to take him to see Dr. S in >> > Cincinnati. I had everything ready to go for his next apt. And today I >> > found out our health insurance policy is changing and doesn't cover >> > casting. What should I do? If we're just holding the curve should we >> just >> > go to Philadelphia Shriner's? Do I give Chicago another shot? I'd >> > appreciate any suggestions/advice you have for me. As always Thank >> You!!!! >> >  >> > Jen Parlante~mom to 3yrs old(52*down to 44*) >> > >> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Hey , Yes, let's catch up soon. I'm sure we'll have much to talk about. It's been a little busier than usual around here with the holidays, and then the cold/sinus bug decided to take up residence at our house for a couple of weeks. But hopefully things will be settling down and returning to normal, whatever that is - LOL! Talk soon, > >> >> > >> >> Here is my issue.....I originally was going to go to Shriner's in > >> >> Philadelphia for casting. However, when I met with the Dr. that does > >> the > >> >> casting he informed me that he doesn't use " shoulder straps " when he > >> >> cast. I had asked all of you your thoughts and most of you suggested > >> >> that we go to Shriner's in Chicago.  We ended up taking your advice > >> and > >> >> it will be a year of casting in Chicago this February. As most of you > >> >> know Dr. S left Shriner's to go to Cincinnati children's. So, for > >> >> 's 4th cast he was casted by a different Dr. To be honest I > >> >> wasn't as comfortable with him. Here's why....I had asked him what > >> the > >> >> game plan was for 's ortho care. And he blurted out that its > >> >> inevitable that he will need spinal surgery. He also told me that > >> >> was 10 degrees in cast and 44 degrees out. > >> >>  When the lump in my throat cleared, I told him was 0 degrees > >> in > >> >> cast and 40 degrees the last visit. I had asked him what the likely > >> hood > >> >> was that the x-ray during his 3rd casting wasn't accurate. He said > >> >> regardless he needs surgery. > >> >> So for 's 5th cast I decided to take him to see Dr. S in > >> >> Cincinnati. I had everything ready to go for his next apt. And today > >> I > >> >> found out our health insurance policy is changing and doesn't cover > >> >> casting. What should I do? If we're just holding the curve should we > >> >> just go to Philadelphia Shriner's? Do I give Chicago another shot? > >> I'd > >> >> appreciate any suggestions/advice you have for me. As always Thank > >> >> You!!!! > >> >>  > >> >> Jen Parlante~mom to 3yrs old(52*down to 44*) > >> >> > >> > > >> > > >> > > >> > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 My daughter is starting kindergarten this fall and I just received notification of proof of shots required in less than a month. I stopped her shots right before her MMR so she has 6 shots now due. My husband is very strong about her receiving her shots, but I am still not wanting to get them. His mom was a RN and now works in a lawyer's office, so I'm trying to figure out our best option for my daughter. I've heard of doing one shot at a time and know of a naturopath that gives a " high quality " brand Sanofi Pasteur and also know of another naturopath that can do a vax detox after her shots. But I still just don't know much about either and still worry about her mental abilities being affected if I get the shots. Can anyone help me out? Thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 My daughter is starting kindergarten this fall and I just received notification of proof of shots required in less than a month. I stopped her shots right before her MMR so she has 6 shots now due. My husband is very strong about her receiving her shots, but I am still not wanting to get them. His mom was a RN and now works in a lawyer's office, so I'm trying to figure out our best option for my daughter. I've heard of doing one shot at a time and know of a naturopath that gives a " high quality " brand Sanofi Pasteur and also know of another naturopath that can do a vax detox after her shots. But I still just don't know much about either and still worry about her mental abilities being affected if I get the shots. Can anyone help me out? Thanks so much. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 What state are you in? t On Mar 28, 2011, at 12:25 PM, rksnielson wrote: > My daughter is starting kindergarten this fall and I just received notification of proof of shots required in less than a month. I stopped her shots right before her MMR so she has 6 shots now due. My husband is very strong about her receiving her shots, but I am still not wanting to get them. His mom was a RN and now works in a lawyer's office, so I'm trying to figure out our best option for my daughter. I've heard of doing one shot at a time and know of a naturopath that gives a " high quality " brand Sanofi Pasteur and also know of another naturopath that can do a vax detox after her shots. But I still just don't know much about either and still worry about her mental abilities being affected if I get the shots. Can anyone help me out? Thanks so much. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2011 Report Share Posted March 28, 2011 What state are you in? t On Mar 28, 2011, at 12:25 PM, rksnielson wrote: > My daughter is starting kindergarten this fall and I just received notification of proof of shots required in less than a month. I stopped her shots right before her MMR so she has 6 shots now due. My husband is very strong about her receiving her shots, but I am still not wanting to get them. His mom was a RN and now works in a lawyer's office, so I'm trying to figure out our best option for my daughter. I've heard of doing one shot at a time and know of a naturopath that gives a " high quality " brand Sanofi Pasteur and also know of another naturopath that can do a vax detox after her shots. But I still just don't know much about either and still worry about her mental abilities being affected if I get the shots. Can anyone help me out? Thanks so much. > > Quote Link to comment Share on other sites More sharing options...
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