Deciding on "elective" surgery for children- (CP)

[Paige]

My DD7s new doctor wants her to have surgery right away. I am not surprised but it doesn't make the decision easy. I'd love to hear from other people who have had to make similar decisions. Or anyone, really...I have some many choices of how to deal with this and no idea what is best or what we'll choose. I'm mostly thinking out loud.

 

Background: DD7 has CP. She is very mild and very functional. Most people would never notice. The Dr wants to do tendon lengthening procedure because the tendon in her leg has become so tight it has shortened. In the past, we have done serial casting to address this and she responded extremely well to that and enabled us to put surgery or other interventions off for about 3yrs both times. At the time of her last casting, her Dr thought it wouldn't work because she was so tight but allowed us to try. He was amazed that she improved so much with it. She is not as bad today as she was before the last casting. We have just moved and the Dr who wants to do surgery has only seen her once. I told the new Dr about how well she responded to the casts the last two times and he nodded and smiled and said he would not try it again. Surgery was his only solution and the kicker is that this surgery is different than what her previous doctors had planned with a longer recovery but the new Dr claims it has lower risks of future problems.

 

So.....what to choose...We are obviously seeking a 2nd opinion first but I'm afraid the 2nd opinion will leave us with a different dr with a totally different plan, making the choice harder. This surgery is considered elective because she won't die without it although without it they claim she will eventually become more disabled. There are many types of this kind of surgery, lengthening different muscles/tendons, cutting in different ways, and other procedures that aren't exactly cutting but more poking. With my research, the success rate for the surgery is not great-I'm talking less than half- but who knows how much worse the kids would have been without it? There is not a large control population of kids who haven't had the surgery because it is the standard treatment. There is a high percentage of people who feel it has made them worse, but again, who knows how much worse they would have been if they didn't do it? But, I've heard of kids who could walk before going in who come out completely unable to walk for months. The Dr swears this won't happen.

 

Ughhhh!!!! On top of this, DD is terrified.

 

So- We can see DD is getting worse and needs intervention ASAP.

1- We could insist on casting again first and find someone to do it. The problem is this is very painful, takes a long time, and now we live in a podunk town where I'd have to drive a min. 1 hr each way a week to do it. Even though she had great results, I told myself last time that I wouldn't put her through that again. Once it is done, she may still have to have surgery and she will be much weaker going into the surgery making her recovery more difficult. Doing this first is not completely risk free but the risk of it permanently disabling her or reducing her mobility are almost zero. If it works, we'd be able to delay the surgery for hopefully another 2-3yrs. The older the children are when the surgery happens the first time, the better the results and the less likely they will have to do it again.

 

2- Surgery 1 with Dr 1. Easiest and closest choice as far as logistics but I am skeptical about his methods being better for her. I, who am not an orthopedic surgeon, think that she won't have as good results with this procedure because of the muscles involved. Dr 1 says he does surgery 1 for all patients because of risks of surgery 2, but DDs issues seem to be more in line with surgery 2. I would feel better about it if Dr had said that he's choosing surgery 1 because it is best for her and not because it is "what he does" for everyone. The recovery for this as described by Dr 1 is very painful and difficult and DD will not be cooperative.

 

3- Find a Dr who does surgery 2 or go back to our old doctors 7hrs away. Even if we don't go back to our old drs for this, we'd have to do it a minimum of 2hrs from home. Drs 2 said the recovery for this is not bad and said DD will not be in much pain. Maybe he was being very optimistic, however? The people on the computer still say it is rough.

 

4- See if the Shriners will treat her. They do more involved evaluations and I completely trust them. We have a hospital nearby (1.5-2hrs away) that could do it. We'd go with what they suggest but I'm not sure if they would take her. I'd feel a little guilty using free care when we have insurance.

 

5- Go see hyped up special Dr in NJ or TX who does specialized much less invasive surgery that nobody else does. We'd have to pay out of pocket for the travel and all the logistics of doing an outpatient surgery far, far from home. Recovery for this is supposed to be the easiest because it is the least invasive. They also claim to have much better results with a higher success rate, and if they need to do it again, the 2nd surgery has better results because of the lack of scar tissue. With surgery 1 and 2, you usually have to redo it 10yrs later and the results are not as good the 2nd time because of all the scar tissue. Negative- some people say this procedure is quackery. This choice seems to offer her the best success but I think we could be disappointed with not miraculous results and out a ton of money.

 

We have to move quickly because she is getting worse every day. The Dr wanted to do it this month but I put it down for Dec. I can cancel it if we decide to do something else. Thanks for reading and I'm sorry if it is so long. My DH always leaves these decisions to me so I know that whatever I decide to do will be what we go with. It's such a hard decision because I'm afraid the wrong decision will cause her to permanently lose or decrease her mobility. I think it would be easier if DDs issues were worse. Right now she can do everything. She has problems sometimes but she can still walk, run, jump, do taekwondo and gymnastics, and is not in any significant pain. She will not see any surgery or casting as benefiting her. We are doing it more to prevent future problems before they start rather than to make things better for her now.

Edited October 8, 2011 by Paige

[Laurie4b]

I would get a second opinion from another physician.

[jenn-]

Okay, I will start of saying I really don't know much about CP. That said going by your descriptions, I would lean towards casting again. I only say that because you said she has responded well to it before and that the surgery is more successful on older patients. Even if you only get another 2 years after casting, she will be older for the surgery. You will also have a couple more years to figure out which is the best way to proceed surgery wise. I am sorry she is going to have to be in pain with any of the decisions.

[KungFuPanda]

My experience is only with muscular dystrophy, but I see a huge geographical difference with consistency of care. I would hit the bulletin boards and find out about the typical course of treatment in areas of the country that are a little more progressive and treat more cases successfully. You'll probably find that options that are phased out in one part of the country are still in use in some areas. You don't want to settle for outdated methods just because your local doctors are comfortable with them.

[QueenCat]

My older son has very mild cp. You would probably notice since you have a child with mild cp but most people would not. I wish we had done tendon lengthening when he was younger. The afos helped a lot but not completely, and now, at 21, tightening has resumed. Surgery a few years ago would have helped but now, I doubt I could talk him in to it.

[momma aimee]

Okay, I will start of saying I really don't know much about CP. That said going by your descriptions, I would lean towards casting again. I only say that because you said she has responded well to it before and that the surgery is more successful on older patients. Even if you only get another 2 years after casting, she will be older for the surgery. You will also have a couple more years to figure out which is the best way to proceed surgery wise. I am sorry she is going to have to be in pain with any of the decisions.

 

:iagree:

 

If the casting has been successful 2x, once When the doc did not expect it to be, I'd try that first.

 

I do not trust a doc that says 'this is just What I do" -- makes me feel he is out to make himself at ease and happy and not care abut DD as a special person rather than just another case -- too ' by the book' imo

[Scuff]

Okay, I will start of saying I really don't know much about CP. That said going by your descriptions, I would lean towards casting again. I only say that because you said she has responded well to it before and that the surgery is more successful on older patients. Even if you only get another 2 years after casting, she will be older for the surgery. You will also have a couple more years to figure out which is the best way to proceed surgery wise. I am sorry she is going to have to be in pain with any of the decisions.

 

:iagree: I also don't really trust current doc much from your description.

[Starr]

I agree with reading on line and finding doctors well known for treating this problem and look into what treatments they are doing. I know how you feel as I have a health problem that can be treated in several miserable ways in many different parts of the country. You want what is best for you child even if it's away from home. That is one of the difficulties we face living in small communities. Give Shriners a call and if they won't take you maybe they can give you a referral. :grouphug:

[littlebug42]

I do not have a child that has CP but I do have a child with clubfoot and have dealt with many tendon tightening issues. From all that I have read, despite what your doc says, I would not consent to one of the more involved, invasive tendon lengthening surgeries unless I knew in my heart of hearts that she had no other options. I have not heard good things about these surgeries and have heard many negative stories.

 

I would do what I had to do to get my child to a top notch doc. We drive 6 hours one way to see my daughter's ortho because that is what we had to do to get her the kind of care she needed. Where are you located? PM me if you would feel more comfortable. The top of the line clubfoot docs have plenty of experience with these tendon issues and do not tend to jump to surgical intervention. Some of these docs also practice at Shriner's facilities. The Shriner's will see any pediatric cases where the child needs orthopedic care and it is not at all income dependent. I would highly encourage you to explore all of your options before consenting to this surgery.

[JFSinIL]

Could you ask the Shriners for an evaluation, just to get another expert opinion, even if you do not use them? And then if you do use them, and they won't take payment...make a donation to them of as much as your co-pay would have been anyway.

[texasmama]

I do not have a child that has CP but I do have a child with clubfoot and have dealt with many tendon tightening issues. From all that I have read, despite what your doc says, I would not consent to one of the more involved, invasive tendon lengthening surgeries unless I knew in my heart of hearts that she had no other options. I have not heard good things about these surgeries and have heard many negative stories.

 

I would do what I had to do to get my child to a top notch doc. We drive 6 hours one way to see my daughter's ortho because that is what we had to do to get her the kind of care she needed. Where are you located? PM me if you would feel more comfortable. The top of the line clubfoot docs have plenty of experience with these tendon issues and do not tend to jump to surgical intervention. Some of these docs also practice at Shriner's facilities. The Shriner's will see any pediatric cases where the child needs orthopedic care and it is not at all income dependent. I would highly encourage you to explore all of your options before consenting to this surgery.

 

:iagree:

 

Child with clubfoot here, too. She will eventually need some surgeries on her toes, but we are putting them off until it is a functional issue and until she is old enough to be involved in the decision making process. The surgeries would permanently fuse joints in some of her toes so she will live with this for a lifetime.

 

In your situation, I would do whatever I had to do, travel wherever I needed to, etc. in order to get all the opinions I needed and exhaust all other options besides surgery. What doc in TX are you thinking of? (Maybe I know him...)

 

When my dd was 3 months old, I used Angel Flight to take her from TX to Iowa for three days to see the world reknown clubfoot expert, Dr. Ponseti. She received casts which corrected her feet fully, something that had not been achieved by her doctor in Texas. After this, we switched doctors to another clubfoot doctor, who still follows her today. No regrets. I know we did everything we could to help her.

Edited October 8, 2011 by texasmama

[iamrachelle]

Could you ask the Shriners for an evaluation, just to get another expert opinion, even if you do not use them? And then if you do use them, and they won't take payment...make a donation to them of as much as your co-pay would have been anyway.

 

:iagree: I am a registered nurse and love the doctors and nurses at Shriners. It sounds like you have a lot of different options... too many to explore given the time constraints of needing the surgery done sooner rather than later. I would seek an evaluation at Shriners and go with whatever their recommendation is. You can let the physician know there that you do have insurance... believe it or not most of the shriner's hospital accept insurance now (actually I can't think of any that don't) so you should be okay to go there even with insurance. IMHO, they're the best at what they do and I wouldn't hesitate to go there for a second opinion. You can discuss the less invasive surgery offered in Texas and see what their thoughts are on that procedure as well. Good luck with whatever you decide... and let us know too!!:001_smile:

[sassenach]

My son has severe CP, and we have done 1 tendon relocation surgery. My answers are below in blue, and completely based on how this all looks through the lens of my personal experience, so feel free to throw out whatever should be thrown out.

 

 

So- We can see DD is getting worse and needs intervention ASAP.

1- We could insist on casting again first and find someone to do it. The problem is this is very painful, takes a long time, and now we live in a podunk town where I'd have to drive a min. 1 hr each way a week to do it. Even though she had great results, I told myself last time that I wouldn't put her through that again. Once it is done, she may still have to have surgery and she will be much weaker going into the surgery making her recovery more difficult. Doing this first is not completely risk free but the risk of it permanently disabling her or reducing her mobility are almost zero. If it works, we'd be able to delay the surgery for hopefully another 2-3yrs. The older the children are when the surgery happens the first time, the better the results and the less likely they will have to do it again.

 

With some of my son's surgeries, we have hit the moment where we knew we could piece together another treatment, but we would be right back in that same place in a year or 2. It sounds like that's where you are at. Personally, I would move on from castings. She has some major growth coming down the pike and while the casting might buy you a little time, it really seems like you are going to have to face doing something more sooner rather than later. Would putting her through the casting really be worth it? From my perspective, no.

 

2- Surgery 1 with Dr 1. Easiest and closest choice as far as logistics but I am skeptical about his methods being better for her. I, who am not an orthopedic surgeon, think that she won't have as good results with this procedure because of the muscles involved. Dr 1 says he does surgery 1 for all patients because of risks of surgery 2, but DDs issues seem to be more in line with surgery 2. I would feel better about it if Dr had said that he's choosing surgery 1 because it is best for her and not because it is "what he does" for everyone. The recovery for this as described by Dr 1 is very painful and difficult and DD will not be cooperative.

It just doesn't seem like you trust this guy. I would not do surgery with a doctor that you don't trust. Keep looking. Traveling a little further would be worth it for a doctor that you trusted more. Even if you eventually decide on this procedure.

3- Find a Dr who does surgery 2 or go back to our old doctors 7hrs away. Even if we don't go back to our old drs for this, we'd have to do it a minimum of 2hrs from home. Drs 2 said the recovery for this is not bad and said DD will not be in much pain. Maybe he was being very optimistic, however? The people on the computer still say it is rough.

In my experience, orthopedic surgeries are rough. I think you will find people who had painful recoveries, no matter what procedure you choose.

4- See if the Shriners will treat her. They do more involved evaluations and I completely trust them. We have a hospital nearby (1.5-2hrs away) that could do it. We'd go with what they suggest but I'm not sure if they would take her. I'd feel a little guilty using free care when we have insurance.

I love Shriners! I would at the very least get her in for an eval. Is she a current patient? It might be hard to get her in in your time frame. Don't worry about the insurance issue. They will take your insurance card and file against your insurance. You definitely shouldn't let that keep you away. Even if you didn't do the surgery through them, you could at least get their opinion on your options.

5- Go see hyped up special Dr in NJ or TX who does specialized much less invasive surgery that nobody else does. We'd have to pay out of pocket for the travel and all the logistics of doing an outpatient surgery far, far from home. Recovery for this is supposed to be the easiest because it is the least invasive. They also claim to have much better results with a higher success rate, and if they need to do it again, the 2nd surgery has better results because of the lack of scar tissue. With surgery 1 and 2, you usually have to redo it 10yrs later and the results are not as good the 2nd time because of all the scar tissue. Negative- some people say this procedure is quackery. This choice seems to offer her the best success but I think we could be disappointed with not miraculous results and out a ton of money.

I am skeptical. This is not where I would personally put my energy and money.

We have to move quickly because she is getting worse every day. The Dr wanted to do it this month but I put it down for Dec. I can cancel it if we decide to do something else. Thanks for reading and I'm sorry if it is so long. My DH always leaves these decisions to me so I know that whatever I decide to do will be what we go with.My DH is the same. I love his confidence, but PRESSURE! It's such a hard decision because I'm afraid the wrong decision will cause her to permanently lose or decrease her mobility. I think it would be easier if DDs issues were worse. Right now she can do everything. She has problems sometimes but she can still walk, run, jump, do taekwondo and gymnastics, and is not in any significant pain. She will not see any surgery or casting as benefiting her. We are doing it more to prevent future problems before they start rather than to make things better for her now.

 

Have you gone the botox route (is that part of casting?)? FWIW, ds had fantastic results from his tendon relocation. It was a really hard recovery, but worth it. I feel your pain. These are such hard choices and there really isn't one right answer. Do your best to let go of some of that mom guilt!

 

My ds is 11. In the last 3-4 years, growth has been a major factor in our lives. He has had a lot of negative changes because of the combo of his tone and rapid growth. We've just spent the last 6 months agonizing over whether or not to pursue placement of a baclofen pump (we decided to go for it). My advice to you is to stay ahead of the growth.

 

(((HUGS))) Best wishes to you in the decision.

[celticmom]

I would lean toward the casting as the least invasive. From what you say I would not trust the "one size fits all" doctor.

 

I knew a girl in college who had multiple surgeries at Shriner's when she was very young. I would not say that her long term results were very good. She could use braces and crutches but generally used a wheelchair. However, she was born in the early seventies and I don't think that nearly as many babies with issues such as prematurity survived then. She also did not have an effective family advocate and felt like she was treated like a guinea pig. I don't know how much impact the surgery had versus the relative lack of effective physical therapy available at the time. I also don't know how much imact her efforts or lack thereof at physical therapy might have had. The sad thing is I strongly suspect that if she were born today her disability would be virtually undetectable with proper treatment.

 

I would definitely look into all options and try to wait on anything permanent until your dd could be involed in the decision making or at least understand the reasons better.

[Paige]

My son has severe CP, and we have done 1 tendon relocation surgery. My answers are below in blue, and completely based on how this all looks through the lens of my personal experience, so feel free to throw out whatever should be thrown out.

 

 

 

Have you gone the botox route (is that part of casting?)?

 

She does not respond to botox and I'm not very comfortable with it anymore. She had 2 rounds as a toddler and with the first 1, she improved for about 3 days, max. With the 2nd, we never noticed any difference. A few years ago, I read a study about cp children dying from botox injections. Maybe they were more severe than her but I was told it was impossible for the botox to migrate out of the muscle and cause harm and apparently it is possible. Her new Dr wants to do botox during surgery even though I said it didn't work. I think that's another reason I'm not feeling good about going with him. I know I could refuse botox in surgery, but the fact that he still wants to use it bothers me. IMO, botox should not be used casually.

[sassenach]

She does not respond to botox and I'm not very comfortable with it anymore. She had 2 rounds as a toddler and with the first 1, she improved for about 3 days, max. With the 2nd, we never noticed any difference. A few years ago, I read a study about cp children dying from botox injections. Maybe they were more severe than her but I was told it was impossible for the botox to migrate out of the muscle and cause harm and apparently it is possible. Her new Dr wants to do botox during surgery even though I said it didn't work. I think that's another reason I'm not feeling good about going with him. I know I could refuse botox in surgery, but the fact that he still wants to use it bothers me. IMO, botox should not be used casually.

 

I am familiar with the botox death cases. In those cases, botox was injected very close to the lungs (into the pectorals) and/or over protocol amounts. There is no documented cases of botox, when used at protocol doses, migrating from the lower extremities into the respiratory system.

 

THAT SAID, if it doesn't work for her, there's no reason to use it. Some kids just rapidly build the botox antibodies, rendering it useless.

 

It sounds like that doctor is just not the right guy for the job.

[Jan in SC]

My ds has very mild cp and has done casting in the past. His casting has never been painful, though. His casts only stay on a week at a time. The PTs trench him and then casted him and after the casts come off, we have a week of intense stretching- at least five times a day. The next week is normal twice a day stretching, with his other exercises and then they repeat the casting for another week. He hasn't been casted in over a year, but I've noticed that he is starting to walk on his toes a little more, lately.

 

What would I do? - If I was really confident with the surgeon and the procedure, I would go for it, but that doesn't sound like your case.

 

I would probably try the Shriners and cast while waiting. I would not cast if was an eight week procedure.

[speedmom4]

My son has what I consider moderate CP. He has right sided hemiplegia. My son hasn't had casting or a tendon transfer. We tried botox and it didn't do much good.

 

I would go to the Shriner's hospital. They are experts at what they do. Since you have one so close I would give that a shot first. It sounds like your daughter needs the surgery. I have known several children with CP who had the surgery. I would want the surgery to correct the issue for as long as possible. I would be willing to have a longer recovery time if the issue was fixed permanently.

 

Hope you get this resolved soon. Ultimately you need to find someone you can put your trust in and stop questioning the decision. I know that is very easy to say and much harder to do.

 

Good luck,

 

Elise in NC