Many people have written and asked how they can be put in contact with someone with scoliosis; or someone with scoliosis would like to share experiences. So, if you wish to be listed so someone else can contact you; provide a little information about yourself and your e-mail address and I'll do my best to relay your name via this page. But Im trying to keep this as positive as possible and as educational as possible - so I may edit...
Your name and e-mail address will stay for 6-8 months or so...and I'll try to remove your name if you request.
The usual cautions are needed. I have no personal knowledge of thosee-mail to: email@example.com
HI, My name is Jennifer and I am 27 years old. I had the Harrington Rod surgery when I was 11 years old. I now have a son that is 4 years old. He has was diagnosed with Ideopathic Infantile Scoliosis when he was 1 1/2 years old. We found it through an X-ray that was taken for pneumonia. We did start out with TLSO brace, but it was very hard for me to watch him wear it, because I wore the Milwaukee Brace for one year. His Scoliosis has progressed. He has a 100 and something degree curve. We have scheduled his surgery for May 2000 at Shriner's Hospital In Utah. I am concerned about his childhood after the surgery. I am wondering if there is anyone out there that has a child as young as mine that has had the surgery. I understand that he needs to be very careful because the rod can break very easily, especially because they will not be able to fuse the spine until he is eight years old. I am also concerned about the surgeries he will need to have every 6 months to increase the length of the rod to fit his growth. Are these surgeries extensive? Are they just as hard as the initial surgery? Will he really need to have surgery every 6 months after the initial procedure? As you can tell, I have a lot of questions. Please contact me at firstname.lastname@example.org . I cant wait to talk to someone! ________________________________________________________________________
hi, Im steff. Im 15yr old from gold coast, australia and in jan99 my doctor told me i had severe scoliosis. i was really upset and wouldnt ring any of the people my doctor referred me to because i was still hoping it wasnt true.now, a year later, after i had 2 rods placed in my back im doing fine. I am captain of my basketball team and in the vschool cross country team aswell. Id be happy to share my ups and downs with people who are looking for a little extra info.
"steff is_cool" e-mail address email@example.com
Hi, My name is Carol and I am 44 years old. I was diagnosed with thoracic scoliosis at age 11 and wore a Milwaukee brace until the age of 18. At that time I had a spinal fusion with placement of a Harrington rod. Parents, be empathetic and supportive to your teen children who wear a brace-it can be a very traumatic experience for them. I have had very little back pain and three children since my surgery. I stay physically active and just can't bend the way most people do. I'm grateful there is such a technique to correct scoliosis but would have preferred a less invasive procedure with a shorter recovery period. I was forced to give up atheletics for college but am grateful for my surgery just the same. Thanks.
Editors note: While we , in general, no longer use either the Milwaukee brace nor Harrington rods - each having been supplanted by newer devices...still a brace is still a brace! and rods and hooks now give even better correction albeit not Harrington. But surgery is still surgery!
Hi, My name is Susan and I have 3 years old son, Andrew who has scoliosis. We found out when he was 6 months old. We were told to have him wear any braces yet. His curve started with 18 degrees to 35 now after 2 1/2 years. Doctors are saying that since the curves is progressing that we should think about surgery. I know it's not such a rare disease and the surgery is somewhat common, but, still I am so nervous since he's just too young. Everyone is saying that if surgery is require at any point, we should just do it before he grows up. If there is anyone who has gone through surgery for little kids, please let me know anything and everything about it.
May 23, 2000
Hi! I am Monica, a thirteen year old with scoliosis. I have known about my scoliosis since i was about nine. I have had a Boston Brace since November, seven months. My scoliosis has two curves, one at the top, and one at the bottom. They are both about twenty-five degrees. It took me about three weeks to get used to the brace. You can email me at firstname.lastname@example.org
My name is Darlene. I am 38 years old. When I was 15, I had a 78 degree curve to the left and had surgery with a Harrington Rod inserted. I am now fused at 50 degrees. I have alot of muscle pain from the fusion and the 50 degree curve and believe some of the pain is from the rod. I am interested in hearing stories of others like me. Did anyone have the rod taken out? Did anyone have the surgeries to cut the old fusion and redo the fusion in a better position with new instrumentation. If so, what was the outcome and the details of the experience?
Hello, our 3 year old son has scoliosis and was at 18 degrees about a month ago. I would love to hear from anyone who has sought cranial sacral therapy for themselves or their child with scoliosis.
Thank you, Janet. e-mail to
I am a 48 year old female that was diagnosed with scoliosis when I was 10. The doctors decided to monitor this over a period of years, hoping that when I stopped growing that so would the scoliosis. I wore a plaster cast for a year when I was 13 and was put into a Milwaukee Brace when I was 15 to see what type of correction might be achieved by surgery. By age 22, the curve still was increasing and the doctors then said the continuing progression was due to the fact that I had polio when I was 13 months old, that damaged muscles on my right side.
Finally in 1975, when I was 23, the doctors said because of the continuing progression, I would be totally paralyzed by the time I was 30. I had the spinal fusion with a Herrington Rod placed approx between T3 and L4 as a result of impending paralysis.
The surgery was successful and minimum back pain until about 6 months ago. I now am suffering extreme lower back pain located just below the waistline and towards the right hip. The doctors xrayed and said my spine is full of arthritis and that the lower lumbar area, that was not fused, has taken all the movement over years and the disks are serverly worn. The pain now is so extreme and I am unable to stand up completely straight Walking or standing for more than 20 minutes is now so painful that it has become debilitating. The doctors now say that the only thing that can be done is to fuse the remaining lower lumbar area. They have no results from anyone having this history or this surgery at this age. They also have discussed removing the Herrington Rod and refusing the whole spine.
I just wonder if anyone has experienced any of these problems or had this secondary surgery of the lower lumbar area.
email to: Partish@aol.com 07/16/00
My 10 year old daughter needs surgery for scoliosis. She has a 40 degree Thoratic curve on top and 30 degree lumbar. She may qualify for a new type of surgery using a telescope to insert the metal rods. This is a new surgery and I wanted to know if any one else has had it. Do you think you did the right thing? Are you happy with the surgery? It's only been around since 1997 so I know there aren't many people who have had it. If someone can tell me their experience I would surely appreciate it.
reply to WALSH444@aol.com
Hi, my name is Cheryl and I'm 23. If you live in Canada, you may have seen me on the CBC in '89 when they did a special about me. I was diagnosed with Infantile Scoliosis at around five months of age. It was a very severe form with a curve of around 98 degrees. I had to have surgery as my heart and lungs were being crushed from the malformation. I had yearly surgeries to lengthen the rod until I was eleven and pretty much full grown. I had to be very careful of physical activity during my days before my final operations. I did break rods twice and unhooked it once. I had my last two operations in 1989 at the Children's Hospital of Eastern Ontario in Ottawa (actually, they all were done there). My doctor was originally Dr. Gordon Armstrong but in his later years, he passed me onto Dr. James G Jarvis, an excellent surgeon! I don't know if the same procedure is used anymore as what I had. The second last operation involved taking our the rod. Then I put in traction for two weeks, on a slanted bed to try and straighten my back as best could be achieved before my fusion surgery. Then for the last operation, I had two rods inserted and fused to my spine (Herrington rods). I had around a week in bed after that and then I was put into a fibreglass bodycast for six months. The surgeries weren't pleasan experiences, but the after effect is worth it. I had a checkup in '93 and have been fine since then.
I'm interested in hearing from those who've had similar experiences. Also, if anyone has any questions, feel free to ask me. I'm really interested in learning if there are many instances where rods have broken after the fusion has been done. Is so, what is done. Reason is that I've just started having some back pain high up in my back. I'm going to get to a doctor so I can find out if it's related to my Scoliosis. It's just taking awhile to get in to the doctor and I'd like to know if there's anyone out there that's had this happen.
Cheryl- my e-mail address is at email@example.com
Please help, need some feed back,
My son who is 13 now and 14 in March, is @ a 45% angle. Doctor wants to crack open his front and back, from their he'll be in body cast for atleast 8 months. My son seizures on a daily basis, His G.I. doctors didn't even want to put him under anesthesia, due to the fact he might not wake up.
I feel like I'm in a catch 22 position, I'm really afraid to have this done. My son cannot walk, talk, tell me if he's in pain. And then to be put in a body cast for 8 months, there's only 2 things he can do in life and one is eat and the other is roll all over. Everything else has been taken away from him because of a pediatrician who misdiagnosed him w/ colic @ 3 wks. of age. No, I really don't want to have it done I feel like let God take it's course, but then am I being selfish.
Can somebody give me help me out with some words of wisdom or something!! Please e-mail mail me Sabd412@aol.com
my name is Rachel, I am a 20 year old female that has already been through the whole process of surgery. I was diagnosed at around grade 3. Since then I have worn a brace, not played sports, felt sorry for myself, etc. Then I finally decided (as well as my parents) that surgery was the only option left. My curve before the operation was shaped like an "s" and was measured at 90 degrees. on the top and a few less on the bottom. I wasn't really sure what I was getting into. i didn't really understand that I would never be able to bend my back again. I was told that i would be in a wheel chair by the time I was 22 if I didn't have the operation.I had the surgery which took 15 hours. i was in the Hospital for sick kids in Toronto, ON for about 2 weeks. My recovery was fairly rapid i guess but now I feel like a normal straight spined person!!! I do anything and everything. If anyone needs to talk I would be more than willing if I can help out in any way.
I was diagnosed with idiopathic scoliosis when I was in 7th grade; I wore several different braces, but not as often as I should have. In June of 1999 I had posterior spinal fusion;(corrective surgery) in Syracuse, NY. The doctor fused 2 rods to my spine from top to bottom. ( to put it simply) I went from a 52 degree curve to about 29-32 degree; I was 22 when I got the surgery done. Like others who have written in, I agree that friends don't really understand what an impact scoliosis has on your life and your self esteem. If anyone has any questions about the surgery or anything, feel free to email me. I had a lot of questions too.
I had surgery for an 88degree curve in 1976, at the age of 13. At my first doctor's appointment my curve was 42 degrees but that particular ortho. didn't recognize the scoliosis. 6 months later my curve was 68 degrees. By the time I had my surgery it had moved another 20 degrees. My surgeon had me go for a week of traction at a local hospital,, in the hope that it would make the curve easier top move. I feel am very fortunate. My curve is now 25 degrees! Although the surgery was tough, I believe that the whole experience has helped mold me into the adult that I am. (I am glad to see that casting is not typical procedure anymore. I had to wear a cast for 10 months!)
My 9 year old daughter is being monitored for scoliosis now. We go to the doctor next month.. She often asks if she'll have to go through what I did? I just tell her that I'm sure changes have been made. She worries that she'll have pain as an adult because I do. I assure that her curve will never be as bad as mine, therefore her pain shouldn't be as bad. I don't know if it's true but it works for her!
If I can help anyone with their experience let me know.
e-mail fonda firstname.lastname@example.org
Hello, my name is Emily and Iam 15 years old. I was diagnosed with Scoliosis at the age of 13. I underwent a fairly new Scoliosis surgery. (Thorascopic Anterior Approach) The surgery went GREAT! I was feeling back to normal in 2 weeks and my curve went from 43 down to 7! My question is: Has anyone had this surgery long enough to know the long term out come? With the harrington rods and the traditional surgery, rod removal was not uncommon. Iam very please with this new type of surgery. Infact if I had to do it again I would in a second. I have full flexibility with no restrictions. This is my only concern.
You can E-mail me at: Scoliosis99@Aol.com
V My name is Marie. I am the mother of a 13 year old girl who suffered from neuromuscular scoliosis (she is in a wheelchair because of a spinal problem) Emma was diagnosed with the complaint at around 9 years old and this summer gone had her operation for Harrington Rods and spinal fusion. Her treatment was excellent and she suffered no pain because management of it was so good. She was very scared understandably beforehand but she hasnt looked back and is so glad she had it done. If you are unsure about anything please write to me and I will try to put your mind at rest.
My name is Laurel and I had spinal surgery in 1991. I had late-in-life diagnosed scoliosis, but the curve was progressing very rapidly. I now have Edwards Rods, L3 to T4. Aside from slight bouts of minor arthritis pain, I am fine. I would be more than willing to speak/email with any woman seeking information about the surgical approach to scoliosis. I am going to be 55 years old this year and was told ten years ago (when I had the surgery) that if I did not have surgery I would be in a wheelchair at age 55. Please feel free to contact me with any questions about any phase of the process. Good luck and the best advice is get yourself the best surgeon you can and go for it. You only live once, and you want to be able to do it right!!
"Wehler, Laurel" e-mail to
My 16 year old daughter is a candidate for surgery with an 80 degree kyphosis curve and 18 degree scoliosis curve. After 10 months in a TLSO 22hours a day, her curve continued to increase. Doctors are taking a long time to investigate renal function, anomalies of the spine, ligament looseness, hamstring tightness and other presentations to determine how all this could be contributing to her condition. 3 doctors each recommend different things: new brace, no brace - just physical therapy and surgery. After reading about long term problems in fusing, rods, building pain, etc. we are concerned about the approach we should take. There also seem to be several ways the surgery is done, opening front and back, slitting at side between ribs and then opening back. Anyone with any experience with surgery for KYPHOSCOLIOSIS responding would be appreciated.
Thank you, Nancy