8 y/o bone surgery - Australia

[Missy K]

Hi Toula.

I am the mom of a 7.5 year old boy, Mitchell. He has a ROBPI. His first surgery was at the age of 4.5 years, muscle transfer and pectoralis release (just like your daughter).

His second surgery was just last week. He had the derotational osteotomy of his humerous to improve his external rotation. Essentially the same surgery that has been recommened for your daughter, only difference being your daughter needs internal rotation improvement.

Prior to this most recent surgery (and thanks to his first surgery!) Mitchell could lift his arm quite far up...about chin level, could touch the top of his head, could reach around and touch his lower back, could reach his mouth but only with the back of his hand. Fingers work well, although grip is not as strong as his left hand and his dexerity is not quite as good. He also could not turn his hand over flat. His surgeon said that his surgery went better than expected and that we will see good results after he's completely recovered and out of his splint.

I've noticed during bathing time when his splint is off that Mitch has more "room", for lack of better words, between his armpit and arm. He appears to be not as tight. It looks like a great improvement thus far.

So far we are glad that Mitchell has had this done. Granted, he has a long road ahead as far as therapy and rehab goes.

My husband and I have a lot of trust in his surgeon. That accounts for SO much when it comes to sending your child to surgery. Research your perspective BPI specialist who wants to do your daughter's surgery. See how many osteotomies he/she has done. Ask lots of questions of your surgeon.

If you think of anything else, please email me at missykosel@hotmail.com I'll try to help you out as best I can. Hopefully parents of children who have had this done a longer time ago will come forward and help answer some of your questions.

Good luck to you.
Missy Kosel

[tharper]

My daughter sounds very similar to your son. My daughter, Beth is almost 13. At age 10 she had a Subscapular slide and a latissus dorsi transfer. We recently traveled to Texas Children's Hospital where they are recommending the Osteotomy procedure. Although she has appox. 85% mobility, she seems to put alot of strain on her back trying to compenste in her movements. I am trying to locate more information on the procedure and your reply is the only item I have found. Do you have a website that describes the procedure? Where did your son have his surgery? Was it a day surgery? Did you have to travel? We are still trying to decide whether or not to move forward, my daughters biggest concern is if it is painful and for how long.

thanks for your advise....

[Karen Hillyer]

Beth's parent- I hope you don't mind my question to you,
my son had the same surgery as Beth last year, ( when he was 10 too) a subscap release and latissimus dorsi transfer to help with external rotation, I don't understand, if your daughter had the surgery to help her with her external rotation, why is the hospital recommending a procedure that is normally performed to give more internal rotation?
I am wondering if this might be suggested for my son also.
I understood that osteotomy's were performed to give movement in close to the body, but my son's function was fine with that, it was movement away from thje body he had difficulty with, hence the latissimus dorsi transfer. I apologise if I have gotten my facts wrong here, I am just confused why they think Beth needs this particular surgery.
Thanks
Karen

[tharper]

Karen,

I probably didn't explain myself well enough. This can be so confusing sometimes. Beth's muscle transfer was to give her more mobility and outward range of motion very similar to your son. Her right arm does tend to rotate inward (palm down and elbow bent) and the bone surgery will rotate her lower arm out for her palm to face upward and hopefully match to her other arm. Today when she rotates her palm up, she twists her back and shoulder and can only do about 40% rotation. I am concerned with the fact she overcompensates and I am not sure what the long term effects will have on her back. Also, this should help to straighter her elbow. As you can see I am just starting my research and we have not yet decided to have the surgery yet. Where did your son have his surgery? My daughter had hers here in Las Vegas.

teresa

[Karen Hillyer]

Hi Teresa
We live in th Uk so Gavin had his surgery at Leeds and Mr Kay performed it. The results have been very good so far and we are pleased with the effects. Gavin does have some problem with supination ( palm upwards) but far fewer since he had the muscle transfer, in fact for a few weeks post operatively, his palm could only face upwards and I was a bit worried, but after 2-3 weeks it righted itself, and his arm is in a much more neutral position now.
Mr Kay hardly ever does rotational osteotomys over here, there is another consultant, Mr Birch who does quite a few, but I have always shied away from having one on Gavin, because once it has been done, theres no going back!
Also I don't think there has been enough research/follow up into the long term effects on the bone growth/ density following the surgery, no-one seems to know for sure if having the plate in the arm long term will cause any growth problems etc also over here I have heard of a couple of children who have needed it doing more than once and a couple more who have had problems with the childs body rejecting the metal plate and having problems from that, so it's put me off a bit I'm afraid.
It's so hard to strike the right balance when looking at surgery vs outcome, don't you think?
Karen

[tharper]

Karen,

I forget that this message board reaches people from many different parts of the world. Since I am in the US I assume that is where everyone is as well. I agree with several of your comments. It is so hard trying to make the right decision. It appears that this is quite new in the treatment of BP and I am not finding alot of cases where it has been before which really makes me nervous. I did speak to a man in Kansas City whose daughter (7) had the surgery and both he and her are very pleased with it. I think I will just keep researching it for awhile, and make our decision after the holidays.

It was great speaking to you.

Teresa

[Missy K]

Hi Teresa,

Mitchell is now 3 weeks post op (to the day) and is doing great. I am working on compiling pictures and text for a webpage on Francine's injurednewborn site.

He had his surgery at the Shriners Hospital for Children in Minneapolis, MN which is only about a 3 1/2 hour drive from where we live. Mitchell was admitted the day before his surgery and stayed for two days after his surgery. The surgeon said that we could leave 24 hours post op if we felt comfortable going, but essentially left it up to us, and we opted for the extra day. The surgery itself lasted just over 2 hours.

As far as pain goes, Mitch has a high threshold for it. He doesn't complain much. He did have a PCA for 1 1/2 days post op, so that helped I'm sure. It allowed for an extra boost every 20 minutes and I just continued to push the button even through the night. I think it's key to stay on top of the pain. When we got home he asked for pain meds two or three times and after a week his incisional site wasn't even sore.

I'm SO glad that we opted for this surgery. I can tell a difference already. It's amazing.

If you have any other questions of think of anything else, please let me know.

Good luck,
Missy Kosel

[tharper]

Missy,

Thanks for responding. As you can see from the other messages, I am so thankful to speak to others who are or have gone through this decision making process. There are so many issues to consider. I am so glad that your son is doing well and that you are pleased with the results. Does the Shriners have a BP program there? I seem to be receiving many more positives for doing the procedure. One last question, did your doctor indicate that this needed to be done right away? The responses I have received so far indicate that we still have some time before we need to decide if we want to move forward. However, Beth is almost 13 which is older than your son and also the little girl who had the surgery in Kanas City.

Thanks for taking the time to respond.

teresa

[Missy K]

Hi again Teresa,

The Shriners Hospital in MN and the Shriners Hospital in Philidelphia have BPI specialist/program there. I'm not sure if any others do, I don't think so though.

I'll try to answer your question about the time frame the best I can. Mitchell's first surgery was done when he was 4 years old. He had the muscle transfer and the pectoralis release. We knew going into that first surgery that the osteotomy was possiblity for him down the road. Mitchell's surgeon said that there is an optimal age where this is done and if we did it in the 7-9 year range there would be less chance of him having to have it done again when he was 12-13. So we decided to go ahead with it. He has one more definate surgery in a year to remove the hardware and of course there is a very slight possibility of the osteotomy having to be repeated when he's older. Only time will tell, and of course all kids are different.

So, from my understanding about the 'window of opportunity', your doctor is correct in moving forward.

Hope I didn't confuse you as much as I just confused myself! Long, long day.

Missy

[tharper]

Toula,

Thanks for the information. I'm sorry for the delay in responding, but I took time off for the Thanksgiving Holiday. I did pull down the document you referenced and it was very informative. I appreciate you taking the time to respond. It's nice to be able to take your research and read through the documents.

teresa