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ed1claudia
01-19-2004, 08:25 PM
My 12 year old daughter has been recommended a new procedure called Vertebral Stapling. This is a fairly new procedure pioneered out of Shriner's Hospital in Philadelphia. Do any of you have personal experience or knowledge of this procedure? If so please contact me. Our pediatric orthopedist would like to perform this procedure on my daughter, but he has never done this exact procedure before.

Thank-you

Sharon
( Ed1Claudia@yahoo.com )

Kimber
01-20-2004, 12:38 PM
Hi Sharon,

My daughter is being treated for scoliosis 35/31 with a TLSO. She is 12. I researched for hours upon hours after her initial diagnosis in August 2003. I still continue to look for new info. I did find the web sight for Shriners in Philadelphia which talks about the procedure Dr Betz is doing there. He also has trained some other physicians. There is also a reknowned scoliosis physician and researcher in St Louis named Dr L Lenke. Supposedly he is either doing the procedure or going to start doing it. It sounds really great but when I mentioned it to the orthopedic we are seeing , he was not impressed. He thought it to be risky and stated that he wouldn't even have his child have it. He also said that he thought it "would never be the standard of care" for scoliosis. Anyway, the only reason I share this is to say "get lots of opinions." We also have a friend who is an orthopedic who does spinal surgery and he said "don't do any surgery" and if we ever are told to have it then "get lots of opinions."

I did call Dr Lenke's office in the fall and was told by his assistant that he had not actually done any yet . She said that the patient has to meet the right criteria. She did say that if I wanted to send all the info, xrays ,and pictures that they would look at them.( we live cross country so a trip there would be very involved) Of course, if you live near St Louis, you could actually see Dr Lenke. Also I spoke with a nurse manager at Shriners in St Louis and she tole me that Dr Lenke and Dr Betz were good friends.

I don't know if you are aware but you could also see Dr Betz in Philadelphia if you want to pursure vertebral stapling. Since he has done many of these , it would seem that he is the most qualified. In the begining of my own research I made an appointment to see him but then changed my mind.

My daughter has been very good about wearing her brace and we are beginning to work with a certified pilates trainer in private sessions. My hope is that she is able to strengthen and stretch all those cores muscles that get weak from wearing the brace for so many hours. If the brace controls her curve she will still have the curve lifelong and I think it is important to make a habit of safe and effective conditioning now so that as an adult she will be strong and hopefully have no pain or limitations. Right now, if you did not know she had the scoliosis and were looking at it, you would never notice anything.

Our goal is to be proactive with brace compliance, good physical fitness and a positive attitude. I have read so many stories of surgery on this message board and am more convinced than ever that we want to avoid it whatever it takes. Of course, everyone has to do what is right for them and I wish everyone good health and success.

I hope you get great care and would love to hear what you decide about the vertebral stapling. In theory it sounds like very good. God bless.

Kim

ed1claudia
01-20-2004, 08:26 PM
Hi Kim,

Thank-you for your thoughtful reply. I appreciate you sharing your own experience. I am also doing tons of research and I do have a call into Dr. Betz's office. My daughter does not want to wear her brace to school and we are not making her, though she has to wear it to sleep in and while at home. She got her brace in September and hates it. She is willing to spend a few days in the hospital to prevent up to 3 more years of wearing the brace, since she has a lot more potential growth.
Our current orthopedist feels that this new procedure is another tool in the treatment of scoliosis and is very excited about it. He believes it may even be able to be done on an outpatient basis in the years to come.
I work with physicians on a regular basis and the medical director at my facility recommended that I consult with Dr. Betz and even have the surgery in Philadelphia. His advice to me was to go with the person who is doing the surgery the most, if that is what we decide to do. He said that is what he would do if it were his daughter,which is pretty powerful coming from a physiatrist( MD with rehab specialty) and loving dad. Meanwhile the verdict is still out as I try to gather and sort through all of the information. I live in the Atlanta, Georgia area, so Philly is not close by, but that won't be a factor if that is the direction we decide to go.

If anyone else has had experience with vertebral stapling, I would love to hear from you.

Kimber
01-21-2004, 02:04 AM
Sharon,

I hope you will post again with your findings and outcome with Dr Betz. I really hope to hear good news from you. The possibility of the stapling actually stopping the curve progression with out having to be braced seems like a miracle. God bless you all.

Kim


PS An afterthought. I was wondering if our daughters are in about the same age and growth. My daughter will be 12 soon. She has not started her period but has all the other signs that it is close. Also she has grown about 2-3 inches in the last 8 months and is just under 5ft 5 in tall. She has a 35/31 curve(diagnosed August 2003) Going to a second orthopedic in Feb and due for next xray. She has worn her brace for the 18 hours/day since August and I think maybe 1-2 of her inches of growth has been since August. Therefore we are eager to see if the bracing has controlled the curve progression in light of her getting taller.

mariaf
08-12-2004, 04:15 PM
I sent you an email - but thought I'd post here too. My son had vertebral stapling done at Shriners in Philadelphia by Dr. D'Andrea, one of Dr. Betz' colleagues, who has also done many of these procedures. The surgery is not for everyone, but as you say, some patients would prefer a week in the hospital to several years of brace wear. One also has to meet certain medical criteria in order to be a candidate. I would definitely recommend a consultation visit to Shriners - they will answer any questions you have and, of course, leave the final decision to you. They do not pressure you in any way - perhaps because there is no money to be made - they don't charge for their services! Good luck and let me know how it turns out.

Celia
08-23-2004, 10:14 AM
Hi Maria,

I posted a reply to your private message on "user cp". I was wondering how old your son is ? What was his curve before and after the surgery ? Not many children have had this procedure so it is difficult to assess the results. I know of one child whose curve was 25 degrees before the procedure and 15 degrees after - fast forward two years and his curve is now 35 degrees. His parents are looking into fusion as a possibilty since the child is very much against wearing a brace.

I hope your son is one of the success stories. Please keep us posted.




Celia :)

mariaf
08-23-2004, 04:23 PM
Hi Cecilia -

Much like brace wear, the outcomes of stapling patients will surely vary. I know of a few cases where the stapling did not work. I also personally know of a few patients whose curves have decreased significantly and held there for 2+ years (the procedure has only been done the past 3 - 3 1/2 years). There are so many factors to consider and as we all know, each scoliosis case will turn out differently. Perhaps that's why vertebral stapling is often referred to as "an alternative to bracing" or an "internal brace" - both have similar success rates from what I understand as well.

Take care,

Maria

Celia
08-24-2004, 08:58 AM
Hi Maria,

Worst case scenario, if your son's curve did progress, would the combined bracing and vertebral stapling be enough to control the curve or perhaps even reverse it with growth ?




Celia

mariaf
08-24-2004, 05:52 PM
Hi Cecilia -

If his curve did worsen, then bracing - in addition to the staples - would likely be tried to maintain the curve. I don't know if it would reduce the curve (bracing normally does not do that) but since it hasn't been used in the past together with stapling, who knows. The stapling, as Dr. Betz told us, basically did not burn any bridges.

Even a child like the one you mentioned whose curve initially was reduced and then increased to 35 and would probably require fusion, is arguably no worse off than he would be if he had not been stapled. Agreed, I would not knowingly put my child through the surgery just to buy him 2 years out of a brace, but some people are willing to take a chance that they could get more lasting results (all cases turn out differently as you know).

I say this as someone whose child wore a brace full time for nearly 4 years - and when you have to weigh the options you are basically trying to choose the lesser of the evils. Scoliosis can be sooo frustrating in that sense!!

Thanks for your replies and good luck!!! I hope I have answered some of your questions.

dshan20
03-31-2005, 09:23 PM
My daughter is nine years old and has a 30 degree thoracic curve. Our doctor referred us to Dr. Lubicky in Chicago. Our options are many years of the Milwaukee brace or the vertebral stapling procedure. Our daughter is very active and invloved with sports and I cannot imagine her enduiring that brace for so long. She will have the procedure next week. Would love to hear from anyone who's children have undergone the procedure and am interested in the results thus far with curve retention and possible correction.

Thanks,

dshan20

ed1claudia
06-21-2006, 09:23 PM
Hi Everyone,

My daughter had the vertebral stapling at Children's Healthcare of Atlanta. Her surgeon was Dr. Oswald. Daughter was the second patient in Atlanta to receive the procedure. Her outcome was wonderful. She had curves on both sides stapled. She did require chest tubes as her lungs had to be collapsed and reinflated for the procedure.
She spent 3 nights in the hospital and was out of school for 4 weeks (the 4th week was spring break). Initially her curves really straightened and gradually over the next year she went back to her previous curves, but has not advanced. This was the expected outcome. Her surgeon says if she doesn't progress any further then the surgery is considered a success. Her only restrictions are full contact sports like football (no worries there). I highly recommend her surgeon if you are located in the South. He was responsive to all of my questions and he is immensley qualified as well. He also has an excellent bedside manner. In the past couple of years I have responded to several parents queries about the procedure and will continue to reply to anyone who has specific questions. Let me ad that the decision to have the procedure was agonizing. As parents we do everything possible to protect our children and keep them from harm, then something like scoliosis comes along that is beyond our scope to fix. We have to rely on someone else to fix it, and we have to hope that we made the right decision, whether it be brace or surgery. I understand completely the agony you may be going thru in trying to determine what would be best course for your precious child. Remember, we make the best decision we can with the information that we have. Our kids don't come with manuals or crystal balls. We just do the very best we can.

kbw
08-12-2006, 12:43 PM
Wanting to connect with other families and their childrens regarding experience with the vertebral stapling procedure and outcome. Our dtr. is scheduled to have it done end of sept. and Shriners in Philly by Dr. R. Betz. What can we expect following the initial days after the procedure and what can we expect once back home. We have been told she needs to take it easy first 4 weeks out, no sports.

ed1claudia
08-12-2006, 09:14 PM
From my daughter's own experience, she won't want to do anything much for the first few weeks. My daughter took some pain medication for several weeks post-op, and just didn't have the strength or endurance to do anything like sports. Her first days back at school were exhausting, but she made it. It will depend on how extensive the surgery is and how long it takes. Anesthesia really takes a while to clear out of the system. My daughter was under about 8 hours, and had her lungs deflated and re-inflated. From personal surgery and work experience with adults recovering from surgery, 3-4 weeks is not an unreasonable recovery time. Basically the first week is the hardest. I had to help my daughter shower the first couple of times (completely embarrassing for her, but she also wanted me there). She set the pace for her recovery. She took naps every afternoon, and had to work on school work in order not to get behind. Watched some movies and just lazed around. Most kids don't need to be motivated to get up and move around as they recover, unlike some whiney adults I work with. :-) The incisions are really more like puncture wounds and heal quickly. I don't remember daughter even having any stitches.

mariaf
08-14-2006, 09:42 AM
kbw,

One thing I forgot to mention in my other post -

Typically (not always) it seems as though the younger ones bounce back faster than the older patients (teens).

After the first week, David really had no stamina issues (which seems very common with the teenagers - perhaps it is because they are in the midst of that growth spurt that they tire more easily). David basically was his old self at about 2 or 3 weeks post-op. Once he was discharged from the hospital I don't think he ever needed or asked for pain medication. I remember the worst part after we got home was changing the bandages - but other than that, after the first week or two he was fine. I'm sure that, regardless even of age, every child and every case is different so you should be ready for anything that can happen and hope none of it does :)

best of luck,

LindaRacine
09-26-2006, 12:48 AM
http://www.ksdk.com/news/news_article.aspx?storyid=104267

mariaf
09-26-2006, 08:56 AM
Linda,

Great article :)

IMHO it accurately describes the procedure and its benefits. And while stapling isn't for everyone, I'm glad to see it is becoming more widely used and accepted - and offered as an additional option (to bracing or fusion) to patients who could benefit from it.

Thanks for posting.