Terri,
I would love to share our experience with you! Ian has had no surgeries to date. I have lots of thoughts to share with you. Some I will go into there. If you would like to hear the details of our journey would you please e-mail me kristie@jesusway.org
I think you need more information to make a decision!
I echo the idea of getting a third opinion. Try to speak with the doctor ahead of time and see if they can do an MRI and shoulder x-ray series a head of time to see how that joint is actually forming.
Also ask the current docs you have seen some questions.
Ask why you should wait... ask that particular doctor about the joint deformity issue... talk to him about your concerns about dislocation and the need for (sometimes) repeat Caps surgeries. If I am not mistaken Dr. Waters is also he Anterior Capsule Release instead of the Caps which from my understanding is doing a better job of holding (but I know there is debate about this situation).
Ask the other doc what are the ramifications of waiting. Find out how big of an issue it is since your daughter has good range. Find out if there is anything you can do before surgery is done to change the need to have it (e-stim, botox, splinting, casting). One of the TCH docs I heard did a SOL type splint for the child to wear to see if the stretching alone would help eliminate the need for surgery.
Has your daughter had any surgery? What kind of therapy are you involved with?
I understand your concerns! Please feel free to e-mail me! Maybe we can exchange phone numbers and actually have a chat in real time with voices!
Blessings,
Kristie
2nd Opinion Results
-
marymom
- Posts: 692
- Joined: Mon Nov 05, 2001 5:05 pm
- Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
- Location: Fort Pierce, FL
Re: 2nd Opinion Results
Max has had no surgery to date,
I think a major part of joint formation is constant movement -ideally in a relatively natural setting.
therefor it seems to me having surgery, particularly at a yonger age, would impede healthy joint formation.
I can tell you there are people who have declined surgery and are quite happy they did.
The opinion that is most helpful to me, is my own, even those professionals whom I disagree with offer me valuable information, a range of variability, do not underestimate the value of your own opinion, your gut already knows what is best, right now, it may take hearing other parents or professionals to bring it out, but the answer is there, go with it and feel strong.
I think a major part of joint formation is constant movement -ideally in a relatively natural setting.
therefor it seems to me having surgery, particularly at a yonger age, would impede healthy joint formation.
I can tell you there are people who have declined surgery and are quite happy they did.
The opinion that is most helpful to me, is my own, even those professionals whom I disagree with offer me valuable information, a range of variability, do not underestimate the value of your own opinion, your gut already knows what is best, right now, it may take hearing other parents or professionals to bring it out, but the answer is there, go with it and feel strong.
Re: 2nd Opinion Results
Hello Bugsntazz,
I am sorry, I don't know your name. My name is Renee. I am new to this site, sad to say. I feel I could have helped my son more had I known about it earlier.
Anyway, I am working on a ModQuad at TCH right now. He is 1&1/2 years old. I don't quite get all the talk about caps and shoulders, etc. My only communication with Dr. Nath has been a video and short e-mails and the doctors where I am don't know a thing.
My son had primary sugery at 9 months at Shiner's in Sacramento. When they opened him, they said in their opinion and from the results of the test with the electric whatever, he had enough reaction so they closed him up without doing any grafting, only cleaning scar area, neurolysis.
My son is great but his arm has made little progress but a little. Now I am reading on shoulder and dislocations, things I was not really aware of and seeing the picture of how the socket doesn't grow. Is that what Mod Quad is for? To help the shoulder to grow right? Or to help the arm to move better so that the bone grows more normally?
What do they actually do during Mod Quad that makes the difference to the shoulder? Is that main purpose for Mod Quad?
Does anyone else but Dr. Nath do Mod Quad? If not, why not?
And after Mod Quad, if done early enough, it's possible that you won't need caps? What is caps? Is my son young enough still?
I have been working on this operation since he was 9 months. Okay, this makes me more desperate so I will shout louder. Thanks for your help and answering my questions. I appreciate it very much!
By the way, I am not up on all the medical terms so keep it simple for me, please. Thanks! Sincerely, Renee, Mom of Michael age 1&1/2 years.
I am sorry, I don't know your name. My name is Renee. I am new to this site, sad to say. I feel I could have helped my son more had I known about it earlier.
Anyway, I am working on a ModQuad at TCH right now. He is 1&1/2 years old. I don't quite get all the talk about caps and shoulders, etc. My only communication with Dr. Nath has been a video and short e-mails and the doctors where I am don't know a thing.
My son had primary sugery at 9 months at Shiner's in Sacramento. When they opened him, they said in their opinion and from the results of the test with the electric whatever, he had enough reaction so they closed him up without doing any grafting, only cleaning scar area, neurolysis.
My son is great but his arm has made little progress but a little. Now I am reading on shoulder and dislocations, things I was not really aware of and seeing the picture of how the socket doesn't grow. Is that what Mod Quad is for? To help the shoulder to grow right? Or to help the arm to move better so that the bone grows more normally?
What do they actually do during Mod Quad that makes the difference to the shoulder? Is that main purpose for Mod Quad?
Does anyone else but Dr. Nath do Mod Quad? If not, why not?
And after Mod Quad, if done early enough, it's possible that you won't need caps? What is caps? Is my son young enough still?
I have been working on this operation since he was 9 months. Okay, this makes me more desperate so I will shout louder. Thanks for your help and answering my questions. I appreciate it very much!
By the way, I am not up on all the medical terms so keep it simple for me, please. Thanks! Sincerely, Renee, Mom of Michael age 1&1/2 years.
Re: 2nd Opinion Results
Hello MMom, Can you please explain to me why you wish you did not have the pec released? That is what Mod Quad did, right?
Is this because you feel after having them released it didn't accomplish anything? Are there more complications as a result of having them released or did it just not work? What is the bad thing about having them released?
Also, you said Matthew had less function? You mean he had more and then started to do less? How does that work? Does anything cause that? Sorry, I hoestly don't know any of this? Thank you for answering my questions.
What is anterior capsule release? What does that do as opposed to Mod Quad?
Do any of these operations help them not to be internally rotated? What are the pecs? When does the shoulder begin to dislocate? What can we do to help prevent or at least try to make a difference. Pray, yes but what type of exercise?
Thanks so much for answering. Renee
My son can lift his arm up to his chest, is internally rotated, bends at the elbow, cannot straighten on his own without his brace. When that is on, he can lift higher. His shoulder is very weak. Hope that helps to understand my questions. He has been recommened for Mod Quad from a video.
Is this because you feel after having them released it didn't accomplish anything? Are there more complications as a result of having them released or did it just not work? What is the bad thing about having them released?
Also, you said Matthew had less function? You mean he had more and then started to do less? How does that work? Does anything cause that? Sorry, I hoestly don't know any of this? Thank you for answering my questions.
What is anterior capsule release? What does that do as opposed to Mod Quad?
Do any of these operations help them not to be internally rotated? What are the pecs? When does the shoulder begin to dislocate? What can we do to help prevent or at least try to make a difference. Pray, yes but what type of exercise?
Thanks so much for answering. Renee
My son can lift his arm up to his chest, is internally rotated, bends at the elbow, cannot straighten on his own without his brace. When that is on, he can lift higher. His shoulder is very weak. Hope that helps to understand my questions. He has been recommened for Mod Quad from a video.
Re: 2nd Opinion Results
Renee,
I'll try and answer all of your questions, if something I say doesn't make sense just let me know. Sometimes I tend to talk in circles this late.
Can you please explain to me why you wish you did not have the pec released? That is what Mod Quad did, right?
Yes, Matthew had his pec muscle released during mod quad. It was explained that his internal rotation was caused by his pecs being tight, so if they were released the internal rotation should be corrected. This did not happen, it's still tight.
Is this because you feel after having them released it didn't accomplish anything? Are there more complications as a result of having them released or did it just not work? What is the bad thing about having them released?
If the pec release worked his pecs should not be tight and they are as a result of the anterior capsule being tight. Once the anterior capsule is released the pec tightness will resolve, it's a secondary issue that in my opinion wasn't handled correctly during the mod quad. I think the bad thing about having them released is that it weakend his muscle and it did not work the way it was supposed to. It is my understanding that many docs in Eurpoe and now a lot in the states are no longer cutting pecs because it is to no benefit.
Also, you said Matthew had less function? You mean he had more and then started to do less? How does that work? Does anything cause that?
Yes exactly - Matthew had primary surgery at 6.5 months of age and was making good progress until about May or August. Then his arm started going further into internal rotation. He was losing function because his arm was so internally rotated. His shoulder was turning in which restricted his movement.
Sorry, I hoestly don't know any of this? Thank you for answering my questions.
Please don't ever apologize for asking questions - it's how we all learn.
What is anterior capsule release? What does that do as opposed to Mod Quad?
Anterior capsule release is where the tightness in the front of the shoulder is released. The procedure is done arthroscopically. This surgery is being used in place of mod quad at some facilities. In my opinion is addresses the root of the problem which is the shoulder tightness. By doing this it correctly addresses the problem instead of skirting around it. There is probably more detail behind how it can replace mod quad but I didn't get to into detail with the doc about that because Matthew already had that done.
Do any of these operations help them not to be internally rotated?
The interior capsule release addresses the internal rotation, the mod quad also does however in our case it did not work.
What are the pecs?
Pecs are the pectoralis muscle. There is the pectoralis minor and major.
When does the shoulder begin to dislocate?
The shoulder dislocated from the joint not forming properly due to weakness, etc. Matthew was not at risk for dislocation, it just happened, it could happen at any time. We also like the anterior capsule release because it can be done now. TCH wanted to wait until Matthew was 3 or until he dislocated completely.
What can we do to help prevent or at least try to make a difference.
As far a preventing dislocation I would suggest weight baring. We do range of motion several times a day and have Matthew involved in an aggressive therapy program. He goes/has gone to physical therapy, occupational therapy, acupuncture, chiropractic, reiki energy, reflexology, myo-fascial release, kinesio taping, threshold electrical stimulation.
My son can lift his arm up to his chest, is internally rotated, bends at the elbow, cannot straighten on his own without his brace. When that is on, he can lift higher. His shoulder is very weak. Hope that helps to understand my questions. He has been recommened for Mod Quad from a video.
Matthew used to life his arm to his chest using his back to do it.
Hope this helps.
Cindy
I'll try and answer all of your questions, if something I say doesn't make sense just let me know. Sometimes I tend to talk in circles this late.
Can you please explain to me why you wish you did not have the pec released? That is what Mod Quad did, right?
Yes, Matthew had his pec muscle released during mod quad. It was explained that his internal rotation was caused by his pecs being tight, so if they were released the internal rotation should be corrected. This did not happen, it's still tight.
Is this because you feel after having them released it didn't accomplish anything? Are there more complications as a result of having them released or did it just not work? What is the bad thing about having them released?
If the pec release worked his pecs should not be tight and they are as a result of the anterior capsule being tight. Once the anterior capsule is released the pec tightness will resolve, it's a secondary issue that in my opinion wasn't handled correctly during the mod quad. I think the bad thing about having them released is that it weakend his muscle and it did not work the way it was supposed to. It is my understanding that many docs in Eurpoe and now a lot in the states are no longer cutting pecs because it is to no benefit.
Also, you said Matthew had less function? You mean he had more and then started to do less? How does that work? Does anything cause that?
Yes exactly - Matthew had primary surgery at 6.5 months of age and was making good progress until about May or August. Then his arm started going further into internal rotation. He was losing function because his arm was so internally rotated. His shoulder was turning in which restricted his movement.
Sorry, I hoestly don't know any of this? Thank you for answering my questions.
Please don't ever apologize for asking questions - it's how we all learn.
What is anterior capsule release? What does that do as opposed to Mod Quad?
Anterior capsule release is where the tightness in the front of the shoulder is released. The procedure is done arthroscopically. This surgery is being used in place of mod quad at some facilities. In my opinion is addresses the root of the problem which is the shoulder tightness. By doing this it correctly addresses the problem instead of skirting around it. There is probably more detail behind how it can replace mod quad but I didn't get to into detail with the doc about that because Matthew already had that done.
Do any of these operations help them not to be internally rotated?
The interior capsule release addresses the internal rotation, the mod quad also does however in our case it did not work.
What are the pecs?
Pecs are the pectoralis muscle. There is the pectoralis minor and major.
When does the shoulder begin to dislocate?
The shoulder dislocated from the joint not forming properly due to weakness, etc. Matthew was not at risk for dislocation, it just happened, it could happen at any time. We also like the anterior capsule release because it can be done now. TCH wanted to wait until Matthew was 3 or until he dislocated completely.
What can we do to help prevent or at least try to make a difference.
As far a preventing dislocation I would suggest weight baring. We do range of motion several times a day and have Matthew involved in an aggressive therapy program. He goes/has gone to physical therapy, occupational therapy, acupuncture, chiropractic, reiki energy, reflexology, myo-fascial release, kinesio taping, threshold electrical stimulation.
My son can lift his arm up to his chest, is internally rotated, bends at the elbow, cannot straighten on his own without his brace. When that is on, he can lift higher. His shoulder is very weak. Hope that helps to understand my questions. He has been recommened for Mod Quad from a video.
Matthew used to life his arm to his chest using his back to do it.
Hope this helps.
Cindy
-
marymom
- Posts: 692
- Joined: Mon Nov 05, 2001 5:05 pm
- Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
- Location: Fort Pierce, FL
Re: 2nd Opinion Results
I agree with Cyndi wholeheartedly about weight bearing, and would also like to add chiropractic adjustments, regularly, to help promote healthy joint development, (my opinion)
impacts, everytime the bones are impacted they are stimulated, as much stimulation and movement, let them climb in and out of their carseat, up the cabinets, out of the grocery cart, take time wherever your child wants to climb, and know you are giving your child the best therapy money can buy just by allowing him to climb, also crawling (weight bearing) -
hope I didnt get carried away with the suggestions
impacts, everytime the bones are impacted they are stimulated, as much stimulation and movement, let them climb in and out of their carseat, up the cabinets, out of the grocery cart, take time wherever your child wants to climb, and know you are giving your child the best therapy money can buy just by allowing him to climb, also crawling (weight bearing) -
hope I didnt get carried away with the suggestions
Re: 2nd Opinion Results
Terri,
Is this the post you were looking for?
Cindy
Is this the post you were looking for?
Cindy
Re: 2nd Opinion Results
Thanks Cindy looks more like it
Lyn
Lyn
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: 2nd Opinion Results
My dd had the MQ at TCH at 2 and 3 months. We also got other opinions, including Waters (wonderful man). TCH was the only place that thought we should act now. I had a post months ago about what our priorties for our dd were and how our decision to go with TCH fit that. I won't bother going into that all again, it's just so individual. However, I will add that she did have very good active mid-range of motion, and passive extended range of motion prior to the surgery. She also was very good at compensating. Since surgery, she doesn't compensate nearly at all. She as some active end range, and now we are focusing on strength building in the end range.
The other relevant pt for us that you may want to ask Nath about is how he feels her shoulder jt. is now. He made it very clear to us in his initial eval that he thought her joint was in a very good place and that she would probably not be a candidate for caps. So far all her follow-up shows she is still not a candidate for caps and Nath thinks it is still highly unlikely that she will be.
Just some thoughts.
The other relevant pt for us that you may want to ask Nath about is how he feels her shoulder jt. is now. He made it very clear to us in his initial eval that he thought her joint was in a very good place and that she would probably not be a candidate for caps. So far all her follow-up shows she is still not a candidate for caps and Nath thinks it is still highly unlikely that she will be.
Just some thoughts.