Bobbi does nees caps surg...advice?

[admin]

Any one have andvice on the caps surgery? We just got the letter from Dr. Nath saying Bobbi's tape showed that she needed the caps at three. She won't be three until Nov. Any info would be helpful. Thanks Jennifer, Bobbi's mom.

[m&mmom]

Jennifer,
I was just told that Matthew needed caps when he was three. I did research on the surgery and personally do not agree with it. I have heard of arthroscopic procedures that are working much better. It addresses the shoulder from the front and pulls the humeral head forward. In my research I have heard of many children who's humeral head slips back again after caps. This procedure is also being done before the age of three to help save the joint sooner. Just some info in case you were looking into another option.
Cindy

[Josh'smom]

My son Josh has a LOBPI and is 5 1/2. Over a year ago TCH said he needed the caps surgery but I have been struggling with the surgery/no surgery idea. He did have the mod quad in Aug 2000 when he was 3 and did get great movement from it. Would love to hear more about your decision not to have surgery. Did you get a 2nd opinion and if so from who? thanks you. You can email me direct if you like.

[admin]

Not sure what type of info. you are looking for, but like Cindy I have put MUCH research into investigating this particular surgery. There are now 3 bpi specialists out there who are doing some incredible work addressing these issues with a much less invasive surgery that is having GREAT results without the need for repeat. If you are possibly considering other options I would recommend consulting with Pearl in Ca., Kozin in Philly, or Waters in Boston. I would also be very interested in talking with those who have had the caps a year or two ago and have had follow-up MRI's done on the shoulder joint.

[JaimeC]

My son had caps in December at age 7. It has definitely made a difference in his external rotation, i.e. it is much improved. He had very little before. Pronation is also a little improved. His arm looks more normal too in how he holds it at his side. We were told that since he's very thin, it has a better chance of holding long term. But even at that, we were told it's about a 50/50 chance. It's not a huge surgery and we thought it was certainly worth a try. For us, it's been a positive experience and we're glad we did it. I wish we'd done it earlier. Hope this helps.
Jaime

[m&mmom]

Josh's mom
I don't have a medical degree but for some reason stitching up the back of the joint didn't make sense to me. It seemed like a temporary fix and didn't seem to address the real problem. I didn't like the 50/50 odds. I also felt that committing to this procedure was opening the door for multiple caps surgeries down the road.

We went for a second opinion with Dr. Kozin in Philadelphia. We had an appointment scheduled with Dr. Waters in Boston but after meeting with Dr. Kozin and learning that they are sharing information and bascially doing the same procedure we're staying close to home this time.

I'm still sorting through my notes but here is some information that I obtained during my visit which helped us decied to have the arthroscopic procedure done:
-Dr. Kozin said that when this procedure is done you can see the humeral head go back into place when the front of the capsule is opened.
-The arthroscopic procedure has had great success in resolving internal rotation.
-follow-up mri's are scheduled to see the position of the humeral head and all have been good showing no subluxations and indicates no future surgeries for the joint.
-when approached from the front the scar tissue from surgery gets smaller and the capsule heals and grows with the child
-the procedure is the release of the front of the joint capsule which is made of cartilage and subscapularis is involved as well.
-we don't have to risk complete dislocation waiting for Matthew to turn 3 for this procedure.

I was so unsure about having the caps done, but once I heard about this from Kozin I knew it was the right approach for us to take because I felt peace for the first time in weeks.
Cindy

[francine]

Maia had the caps procedure and we had no choice - she was dislocated and she was in a lot of pain. Did it help? Absolutely! We were warned in advance that it would have to be redone probably one more time -so it became part of our plan - and they were right. It took a while to regroup afterwards but once her shoulder regained it's strength I can say that it was the first time that Maia had a true "shoulder". She had great range, etc.

(And then unfortunately she was injured at day camp when some not-so-smart person [diplomatic?] didn't think and pulled her up by her arm and now we know that she is subluxed again.)

I was very curious to learn about arthroscopic techniques and did ask Maia's doc about them and here was his response that I thought you might be interested in - at least to ask your docs these questions. (and by the way when you get answers can you post them?)

Here are some points brought up:

... the idea is not that there is a problem from the front, but laxity in the back of the joint. That is why the posterior area needs to be addressed first with sutures and reinforcing of that area. An endoscopic approach has severe limitations, including not tightening the back of the joint. Also, endoscopic techniques can only address limited areas and this will have an unacceptably high recurrence rate. Finally, endoscopic techniques will have a high rate of nerve injury since you cannot see as well.

...How is the humeral head held into place once it is "pulled forward"?

...What is done about the laxity of the capsule posteriorly? That is after all where the humeral head dislocates.

...What about the nerve injury caused by endoscopic techniques?

...What is the long- term success rate, and how many have been done?

I know that everyone (docs - parents - therapists) have good intentions in trying to help our kids and trying to find the right methodology. We all have to find what we feel is the "best" way to help our children. I wish I knew what that 'best' way was though. It's so hard to figure out sometimes.

in respect to all the parents out there trying to figure out what to do next... I'm in the same boat.

-francine

[m&mmom]

I have spoken to patients that had this surgery and their kids are swinging from monkey bars and hanging around and there have been no other dislocation problems after this procedure.

The place where Matthew had surgery before of course is giving reasons why we shouldn't have this done but they are not doing the procedure and recently found out that it was being done so I don't feel that they are giving me good advice. Plus if they tell us to have this surgery elsewhere it means that they won't be performing a surgery.

There is a risk of nerve damage but will a skilled surgeon the risk is minimal. It's just like the risk of phrenic nerve damage during primary.

The humeral head goes back into it's normal position where it's meant to be and it's been proven to work through follow up mri's. The front is addressed because it's tightness is what is pushing the humeral head out of place, once the tightness is addressed the humeral head can sit where it's supposed to. The results are seen right on the computer screen afterwards. Long term success rates in my research are 100 times better than the caps.

I am not loyal to one facility, I will go to whoever has the best procedure available to help my son.

Cindy

[admin]

"Long term success rates in my research are 100 times better than the caps." Can you explain this please? I thought this was a brand new procedure. Do you know how many children they have done it on? When did they start doing this procedure? Were the children subluxed or were they fully dislocated? What kind of dislocations did they have? Sorry for so many questions. Thank you.

[m&mmom]

This procedure has been around for about 6 years.

Some children are fully dislocated, some had the humeral head form another socket in another place even after caps was performed.

Why I think this is 100 times better than caps -
Once this procedure is done there is no need for a repeat.
My child will be able to hang from monkey bars.
Minimal scar tissue build up.
The problem with the shoulder is addressed instead of being fixed in a round about way (in my opinion)
The list can go on but I think the first reason is enough.
Cindy